tag:blogger.com,1999:blog-32392335995319175762024-03-24T23:10:00.769-07:00Acromegaly RamblingsStarbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.comBlogger51125tag:blogger.com,1999:blog-3239233599531917576.post-362499538809529882014-05-12T10:16:00.002-07:002014-05-12T10:17:20.299-07:00My Short-Lived Somavert Experience<span style="background-color: white; color: #222222; font-family: arial; font-size: small;">This time I'm talking about Sandostatin (Octreotide) vs. Somavert (Pegvisomant). As I mentioned before, in December I met with my new endocrinologist, Dr Katznelson at Stanford. I really liked the responsiveness of the physicians, and their online patient messaging system. He suggested I start Somavert 20mg injections every other day, on top of the Sandostatin LAR 30mg I was taking once monthly. I've been against daily injections at home from the beginning of my treatment due to decreased quality of life. Living with acromegaly is stressful enough by itself. In fact I've learned over the years of living with acromegaly that it's very helpful to avoid as many stressors as possible, which usually involves advanced planning.</span><br />
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The Somavert process was interesting. Stanford was very helpful in arranging everything. I was placed on the Pfizer-Bridge program so my copay was reduced to only $5 per month. I was also given a home nurse to train me on how to prepare, inject, and store the Somavert. I disliked the Somavert paperwork from the start because of the images of acromegaly patients that were used. Their models were much older than me, and very visibly acromegalic. I didn't identify with them at all. It made me realize how well the Sandostatin has helped to control my physical appearance. The Somavert paperwork included a helpful plastic placemat with instructions printed on it. I also bought a refrigerator thermometer to make sure the Somavert was stored at the proper temperature. </div>
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The process of injecting was pretty stressful for me. Seeing the sharps container for proper disposal of needles made the process all too real for me. I bought a pretty basket to contain my instructions, sharps, alcohol swabs, etc. Maybe what I really wanted to do was hide my head in the sand as much as possible and try to forget I have acromegaly. That's probably a good and bad thing :-) I also have a hard time remembering things and can get irritable easily because I lack patience. I was frustrated because I wasn't good at injecting, but it's supposed to get easier with time. I kept having problems with air bubbles in the needle and that worried me. I called Stanford for help and the nurse practitioner was very helpful. But I couldn't really master the process by myself at home. On top of that I don't think my body was tolerating the Somavert well. I was on 20mg for a few weeks, then went down to 10mg for a week due to side effects. My experience was the same regardless of dose strength. I felt more fatigued, anxious, stressed, and was crying often. I felt like I regressed to the days before I even started Sandostatin. From my personal experience, I knew I wasn't going to feel better if I stayed on this drug for a longer period of time, so I decided to discontinue Somavert. </div>
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It's possible that if I discontinued Sandostatin, then introduced Somavert alone, I may have tolerated it better. But I'm unwilling to discontinue Sandostatin. I've tolerated Sandostatin very well in my opinion since I began treatment. Sandostatin mimics the Somatostatin hormone, or Growth Hormone Inhibiting Hormone (GHIH), and also inhibits a few other hormones. Sandostatin has the benefit that it inhibits growth hormone at the pituitary gland, helping to prevent tumor regrowth, and has been shown to cause tumor shrinkage. Somavert is a Growth Hormone (GH) receptor antagonist that inhibits growth hormone by binding to growth hormone receptors on cells throughout the body. It doesn't necessarily prevent the original tumor's regrowth. </div>
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I also found out that I'm a good candidate for cyber knife surgery. But I'm not yet convinced of the effectiveness of the procedure. So I guess I'm back to square one. At least I tried something different. The good that came out of the experience is I lowered my dose to Sandostatin 30mg once monthly. I wasn't sure I'd be able to handle living on the 30mg alone. It took a few months to adjust, and my memory isn't the greatest, but overall I'm functioning much better. I believe it also helps that I started drinking about 6-8 ounces of strong Starbucks coffee daily. It's helped my blood pressure hit the normal level, around 120/80 or less, that's like a miracle for me :-) I'm having more labs done soon including GH and IGF-1, and I'm keeping my fingers crossed that at most I'm still in the high normal range. I know I feel much better, much more peaceful daily and not as prone to stress. </div>
Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com3tag:blogger.com,1999:blog-3239233599531917576.post-43922383211285169492013-12-20T21:32:00.000-08:002013-12-20T21:34:10.872-08:00New Endocrinologist, New Treatment Plan<div dir="ltr" style="text-align: left;" trbidi="on">
Well I'm excited and worried at the same time. My current endocrinologist, Dr Quobaitary in San Ramon, referred me to another endocrinologist since my Acromegaly is not controlled well enough. I knew that would happen from the start. He made no secret of the fact that he'd only treated 4 Acromegaly patients. But I had really wanted an endocrinologist closer to home because driving stresses me so much. He's a very warm, caring, knowledgeable doctor, but he doesn't specialize in Acromegaly.
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I met today with Dr. Katznelson at Stanford. I feel more secure knowing he's the one who visibly diagnosed me as Acromegalic in 2006, without an MRI. I also know that he's a prominent figure as an endocrinologist and researcher of Acromegaly. Dr. Katznelson told me that my disease is not under control and that we need to change treatment. Physically he noticed Acromegaly tissue swelling on my forehead that other endocrinologists had not noticed. He also suggested I have a sleep apnea study since I'm so fatigued, even though I don't snore often. He stated that he and a panel of doctors do not think high doses of Sandostatin LAR are good (40mg plus). They've also seen that adding Somavert with Sandostatin works well. These are things I'd already heard.
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So he's lowering my Sandostatin to 30mg every 4 weeks, and adding Somavert 20mg every other day. We'll reevaluate after 6 weeks and maybe go down to Somavert a few times a week or once a week depending on how well I respond. I mentioned Gamma Knife and he stated that they could do Gamma Knife or Cyber Knife, but that would be an option for future discussion after he and his panel of doctors review my MRI's. He didn't seem to think that was the best option for me right from the beginning though.
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I'm happy and hopeful, and I feel like I have an endocrinologist who is trying to take care of me, and knowledgeable enough to do it. Luckily my insurance covers Stanford now. I hope I tolerate Somavert well. But I worry now about quality of life because I will have to do Somavert injections myself, and I worry about refrigerating medicine at home, or dealing with injections when I travel. I think I've also avoided having medicine at home because it's kind of depressing, and it makes the disease a little too real for me. But it's apparent that things need to change. I'm going to look into refrigerated medical bags like <a href="http://www.coolicebox.com/product/65/medical_cooler_8l" target="_blank">this one</a> my friend sent me in a link.
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For my New Year's resolution, maybe I will resolve to be a better patient and listen to my doctors more often haha :-) I hope everyone has a Happy Holiday and New Year!
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Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com2tag:blogger.com,1999:blog-3239233599531917576.post-24435775090847941002013-11-19T14:36:00.001-08:002013-11-19T14:36:22.300-08:00Change In Treatment Plans On Hold<div dir="ltr" style="text-align: left;" trbidi="on">
I went to see my current endocrinologist with my list of symptoms that I think are caused by problems injecting Sandostatin, and/or by taking too high a dose. He basically told me he didn't know what to do with me. No surprise there. I knew when I started seeing him that he'd only treated 4 acromegaly patients. My GH and IGF-1 are very good, both within normal range on 40mg every 3 weeks. And it's a noticeable improvement over the 40mg every 4 weeks. So technically my treatment is good, but I don't feel good with my current negative symptoms. He referred me to Stanford to see Dr. Katznelson. I'd already planned to see Dr. Katznelson a few months ago, but I've been putting off the visit. I hate to have to change my treatment, or to be suggested treatments I don't agree with. Not to mention it stresses me out to drive out to the bay area. My endo did lower my Sandostatin dose to 30mg every 4 weeks to see if that is causing my problems. But I didn't realize my primary doctor's office already had 2 months worth of medication on hand. So I had my 40mg injection yesterday, I'll get the 40mg injection in 4 weeks. Then I may go down to the 30mg, unless I happen to get into Stanford before then and have a different treatment suggested by Dr. Katznelson. I also got my enrollment form sent in for Sandostatin's mobile nurse administration program. I hope that helps. Thinking about changing treatment, and a friend currently planning to do Gamma Knife makes me wonder how many acromegaly patients respond well with radiation. The thought of losing pituitary function and needing HRT worries me. But having acromegaly symptoms uncontrolled by medication is a worry as well.
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Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com0tag:blogger.com,1999:blog-3239233599531917576.post-1110244963815112312013-11-04T11:32:00.000-08:002013-11-06T08:22:29.050-08:00Drastic Change in Acromegaly TreatmentHopefully I'm not rambling without making sense. Hopefully I do know my own body, and know what is right for me. I have a plan to drastically change my Acromegaly treatment.
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In the last year I think my injections were done incorrectly. I thought I was experiencing scar tissue due to receiving injections of Sandostatin LAR for 6 years. My primary doctor had problems injecting almost every month, and there was some spillage of medication. My injections were usually done high on the buttocks. In the last year, I started developing these bubbles under the skin, as though the medication collected in one place, and was not distributing properly or quickly enough. I had some irritating symptoms in the last year. But on reflection, I had so much energy! I could work from home around 15-20 hours per week, entertain people at night, participate in other activities (even river rafting), no problem. My high blood pressure went away, even though I gained weight. I felt as close to "normal" as I ever have since developing Acromegaly.
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But in the last few months, I asked the doctor to change the injection location based on the Novartis instruction booklet (rev. 4/04). Based on their booklet, the injections should've been done lower by about 2 inches. Since the change, I feel so very fatigued, and I have brain fog, memory and concentration issues, trouble speaking and conversing, so many more muscle and joint aches (arthritis-like pain), depression, anxiety, insomnia, and many more symptoms. I do remember feeling like this before my injections were done "incorrectly." What a difference!
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I then looked at my history of treatment, and examined my GH and IGF-1 results since 2007 using an excel file. I felt pretty dumb for not doing so earlier. I'll blame trust in my doctor, and drug induced brain fog. On 20mg LAR my GH and IGF-1 actually increased. On 40mg every 4 weeks, my GH went down but IGF-1 was high normal. I think I developed high blood pressure due to higher doses of Sandostatin LAR, and possibly gained weight 15+ lbs due to this also. I was surprised to see that I have almost the exact same GH and IGF-1 results on 10mg every 4 weeks, as on the 40mg every 4 weeks! On the 40mg every 3 weeks, I did see a bigger decrease in GH and IGF-1, but it's not worth the side effects! Hopefully my endocrinologist will agree with me. I want to completely stop the Sandostatin LAR, then reintroduce at 10mg if necessary. I may have to be a bad patient and not listen to him though :-) Or change endocrinologists! I'm very stubborn, in many ways I am my own downfall. I've always insisted that a doctor perform my injections, rather than a nurse. I think I may try to be smart now though, and try to utilize the <a href="http://www.us.sandostatin.com/health-care-professional/acromegaly/mobile-administration-program.jsp">Access Sandostatin / Mobile Administration Program</a>. A trained traveling nurse to perform injections at your home or other convenient location, what a concept!
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EDIT: An Acromegaly friend advised me of a potential problem when stopping Sandostatin. She knows another person with Acromegaly who did the same thing and his IGF-1 went up rapidly. He ended up having to increase the dose of Sandostatin and start Dostinex to get back to normal levels. I'm definitely taking this step seriously, and am planning to monitor things closely if that's the decision I make. If nothing else, I'd like to decrease down to 20mg every 4-6 weeks.
Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com0tag:blogger.com,1999:blog-3239233599531917576.post-24468380516217544352013-09-15T11:02:00.001-07:002013-09-15T11:09:52.956-07:00Sandostatin LAR Side Effects<div dir="ltr" style="text-align: left;" trbidi="on">
I definitely don't think there's a complete list of side effects for Sandostatin LAR. I've had a lot of weird symptoms that I believe may be side effects since being on Sandostatin LAR for over 6 years, since May of 2007. Here is a list of my symptoms that I think may be additional side effects. I'm not sure if it's due to taking a higher dose of Sandostatin LAR (I'm on 40mg every 3 weeks). <br><br>
<b>Extremely dry flaky skin</b> (especially on upper arms, torso, and head)<br>
<b>Hair loss</b> (I lose a lot of hair when brushing, and have a patch of "hair cleavage" on the back of my head)<br>
<b>Heart palpitations</b> (especially after drinking too much soda)<br>
<b>Metal sensitivity</b> (skin rash from necklaces or rings)<br>
<b>Sun sensitivity</b> (skin rash, easier to sunburn)<br>
<b>Muscle sensitivity</b> (Fatigued by high winds and cold temperatures. Repetitive or continuous activities like exercising too hard, holding a book while reading, or holding a steering wheel while driving for long periods can cause fatigue, muscle tightness, jumpy/snapping sensation in muscles, and neck aches/headaches)<br>
<b>Flushing</b> (neck, chest and face rash when I get too warm, or anxious)
<b>Animal Allergies?</b> (runny nose, itchy eyes when exposed to cats or dogs, or to dander on someone's clothing)
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<b>Side Effect List from Novartis' <a href="http://www.us.sandostatin.com/patient/acromegaly.jsp">Web Site</a>:</b><br><br>
IMPORTANT SAFETY INFORMATION<br><br>
Warnings and Precautions: Treatment with Sandostatin LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor.<br><br>
Before taking Sandostatin LAR Depot: Tell your doctor if you have a history of heart disease or are taking other medications, including: cyclosporine, insulin, oral hypoglycemic agents, beta-blockers, and bromocriptine.<br><br>
Common side effects: Most patients experience side effects at some time. Some common side effects you may experience include:<br><br>
Acromegaly: diarrhea, gallstones, abdominal pain, and flatulence<br>
Carcinoid tumors: back pain, fatigue, headache, abdominal pain, nausea, and dizziness<br><br>
Other information: Patients with carcinoid tumors and VIPomas should adhere closely to their scheduled return visits for reinjection in order to minimize exacerbation of symptoms. Patients with acromegaly should adhere to their return visit schedule to help assure steady control of GH and IGF-1 levels.
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Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com4tag:blogger.com,1999:blog-3239233599531917576.post-91314209006375660092013-09-11T11:09:00.002-07:002013-09-11T11:09:55.773-07:00Yes I'm Still Alive - Feel Free To Email MeHey everyone. I just wanted to say yes, I'm still alive :-) I received an email from a fellow Acro wondering why I was neglecting to post. I'm including some of my response here. I'm sorry I don't blog as often. Part of the reason I was so active online in years prior is because I was still figuring things out, and still coming to terms with the disease. There were also much fewer online resources for Acromegalics. Now we have so many that I wonder how rare the disease really is. So yes, usually if I don't blog it's because things are going well. It's still rough but mostly I do ok, and my treatment is pretty straightforward. Since changing to an endocrinologist closer to home, my stress level has gone down (I think I have whitecoat anxiety on top of everything else!), and I only visit him once a year. My labs are once a year, and MRI's once every 3 years since there's been no change in so long.
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I also try not to dwell on the Acro because I'm one of those people who will worry it to death, and be online Googling everything for 12 hours straight, or till I fall off my computer chair passed out :-) I think I've already done enough worrying with 7 years since surgery alone! And truly part of my neglect is frustration with this disease, because there are so many unknowns. It's sad when I think I'm more knowledgeable than my doctors sometimes. I also don't want to post as often and feel like a big whiny baby :-)
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That said, I always like to be there to help out if there's someone with Acro who needs to compare notes, just needs to talk, or to meet in person. I've met in person Ellen from Acromegaly Bloggers, Wayne Brown from Acromegaly Community, and was lucky to meet Tanya Angus before she passed. I think that meeting my fellow Acro's in person did help in my search for information, validation, and my healing process. There are a few people with Acro that I still speak with via email. Please feel free to contact me. I'll likely respond to email much quicker than I will to write a blog post.
Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com0tag:blogger.com,1999:blog-3239233599531917576.post-13197965770536646002013-05-29T23:11:00.002-07:002013-09-11T10:51:05.438-07:00LAR Injections & Scar Tissue<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="background-color: rgba(255, 255, 255, 0);">I'm wondering if anyone has a problem with scar tissue inhibiting injection of Sandostatin LAR? I'm on 40mg every 3 weeks. I've been getting LAR injections for almost 7 years. In about the last year my doctor has been having problems injecting, and a significant amount of medication is spilled. At first I thought he wasn't thawing medication properly. But it's happening almost every month now. I also have hard lumps as though medication collects in one spot and doesn't distribute. I haven't tried massage extensively, but its very painful and doesn't seem to reduce lumps. My symptoms are trying to return and my IGF-1 is slowly increasing as I'm not receiving the optimal dose. Anyone with experience or suggestions?? I'm hoping I don't have to go the daily injection route. I imagine I'd eventually build scar tissue that way too. Thanks!</span></div>
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<b>Update 9/11/13:</b> I think I have the answer on the scar tissue, time will tell. I realized my doctor was giving my injections too high on the buttocks, and not rotating them as much as he should've. Not that I can blame him, he's my primary care doctor, not an endocrinologist. My horrible memory and lack of attention to details doesn't help either. So it's been two appointments since he's been injecting and rotating properly. The lumps from injection are much smaller, and there's no problem with administrating the medication (no spilling). I've also made sure to lay down when getting injections, to ensure that he can see the injection site properly.
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Now I'm wondering if I need as high a dose, or as often an injection as I'm receiving! I've been extra fatigued and irritable. My GI problems seem worse. And my muscles are very sensitive and sore again. I'm guessing it's all Sando related. Hopefully it will clear up after a few months??
Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com6tag:blogger.com,1999:blog-3239233599531917576.post-50975305488360275472013-02-20T23:02:00.000-08:002013-03-04T12:30:33.505-08:00IGF-1 Assay Range for Comparison<div dir="ltr" style="text-align: left;" trbidi="on">
I've recently learned of an IGF-1 assay range issue, and thought it would be interesting to post the range used for me. It is from January of 2012. I was 35 years at the time this assay was used, and my IGF-1 was 283 ng/mL, growth hormone (ICMA) was 0.721 ng/mL, with a range of <=6 for all ages. My UCSF endocrinologist wanted me under 1 ng/mL for growth hormone. <br />
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<div class="MsoNormal">
IGF-1 (BL- blood level) Assay Range by LabCorp (San Diego, CA US) for use by
UCSF endocrinology for Acromegaly treatment (San Francisco, CA US) January 7, 2012
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<b style="mso-bidi-font-weight: normal;">Age</b></div>
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<b style="mso-bidi-font-weight: normal;">Mean</b></div>
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<b style="mso-bidi-font-weight: normal;">SD</b></div>
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19-20y</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
217-475</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
323</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
75</div>
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<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
21-30y</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
87-368</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
237</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
74</div>
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<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
31-40y</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
106-368</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
225</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
71</div>
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<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
41-50y</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
118-298</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
205</div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
60</div>
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<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
51-60y</div>
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53-287</div>
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172</div>
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55</div>
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61-70y</div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
75-263</div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
180</div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
51</div>
</td>
</tr>
<tr style="mso-yfti-irow: 7; mso-yfti-lastrow: yes;">
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
71-80y</div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
54-205</div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
156</div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; mso-border-alt: solid windowtext .5pt; mso-border-left-alt: solid windowtext .5pt; mso-border-top-alt: solid windowtext .5pt; padding: 0in 5.4pt 0in 5.4pt; width: 119.7pt;" valign="top" width="160"><div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
46</div>
</td>
</tr>
</tbody></table>
</div>
Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com3tag:blogger.com,1999:blog-3239233599531917576.post-42231863832074435412013-02-20T19:58:00.003-08:002013-02-20T19:58:46.136-08:00Acceptance of the Disease, or just Tired?I've felt many times lately a feeling of peace that I hadn't felt before in regards to life and Acromegaly. As though I'd come to terms, well mostly, with my Acromegaly. Maybe it's just Tired Jenny speaking? I'm not sure. I should surely have gone through all of the *steps* with over 6 years of confirmed diagnosis. But it's a nice feeling. Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com2tag:blogger.com,1999:blog-3239233599531917576.post-22983218520753041712013-02-20T19:55:00.002-08:002013-02-20T19:55:48.039-08:00Stress, Anxiety and Acromegaly<br />
I used to stress and be anxious about what caused my Acromegaly. I think
I've mostly come to terms with it, and hopefully one day I'll stumble
upon the reason. As far as managing anxiety and stress, I would try medication,
but I don't because I always get side effects. I've learned to pay attention and listen
to my body more, learn my triggers and try to avoid them ahead of time. I
avoid crowds, certain individuals that stress me (I've completely cut
some friendships), shopping at certain times, driving long distance,
amusement parks, small children (just screaming/cranky ones), etc. I
really work on communicating my feelings, and learning what bothers me.
I've learned to manage pretty well, but some days none of my techniques
seem to matter! Unfortunately this means I also avoid some things I
love.Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com0tag:blogger.com,1999:blog-3239233599531917576.post-57108490439893741112012-07-25T15:44:00.000-07:002012-07-25T15:44:25.387-07:00A New Chapter?<div dir="ltr" style="text-align: left;" trbidi="on">
I'm sorry for the negativity I've been projecting lately. When I become very tired and stressed (it seems like even little things stress me out these days) I become very cranky. I've been trying to learn to recognize how I feel in advance to curb my negative behavior, but it's hard. I'm frustrated by my lack of options in treatment, the negative effects of medication, and the negative effects of having Acromegaly. It's a difficult disease to live with.<br />
<br />
I think rather than continue my dissatisfaction with my treatment, and with UCSF right now, I will see if I can return to Stanford for a new opinion on my care (thankfully I have a PPO now, more options). And maybe I will find an herbal supplement to help with my stress issues? I wonder how everyone else with Acromegaly deals with the angry outbursts? I feel as if I can't control my actions sometimes, like a child having a temper tantrum. At first the Sandostatin seemed to help with that. Maybe 40mg every 3 weeks is too much for me? I've started gaining weight again, I've had GI issues, my hair is extremely dry and seems to have stopped growing as much and is turning completely gray at 35. It's so tiring trying to determine the proper care for myself. I feel like I can't trust any doctors because they truly don't know what I'm going through, and they don't have the experience with my disease to help me. All they can tell me is what the numbers should be on paper. They might look right, but something's not right. </div>Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com2tag:blogger.com,1999:blog-3239233599531917576.post-9330506918107726042012-05-12T23:52:00.001-07:002012-05-13T10:19:51.736-07:00Wishing for a MiracleFive and a half years after surgery and I'm so tired of dealing with Acromegaly and the medication. My diet sucks. I'm constantly trying to tweak things to find a normal, healthy diet. But I can't stick with it more than a couple weeks. My hunger overtakes my will. Same with exercise, only my fatigue overtakes me.
<br><br>
Julie was commenting on her blog (Acromegaly and Me) regarding working and Acromegaly. I think it definitely makes it more difficult, I just don't know to what extent. Last fall I joined 2 parent clubs, and I just recently started working as an office assistant 10 hours per week (in addition to the care and constant taxiing of my 3 children). My blood pressure went from 130/80 to 160/100. I was feeling the stress for sure. I became kind of alarmed and tried a diuretic under doctor supervision (I've tried I think 3 other BP meds before with negative side effects). My BP went to 120/80. Great! But I've been thinking it interferes with my Sandostatin. I'm tired all the time, brain fog is worse, I'm having headaches/neck aches again, sciatic issues are flaring. I had been doing great on the Sandostatin alone with less stress. *Sigh* I feel like I can't win, there is no solution. I've quit one parent club. Maybe I can quit the diuretic and up the Sandostatin so I can possibly function without BP med. I knew I still wasn't at "normal" even on the 40mg every 3 weeks, no matter what the doctors or numbers say. I know my body and it wasn't there yet. And there's the additional worry that at some point my insurance might somehow drop me, or try to delay my care because I'm too expensive. I don't want to be this expensive!
<br><br>
I'm encouraged to hear Julie is on 60mg LAR every 4 weeks and feeling fantastic. I think it's funny though, my doctors (fellows) at UCSF kept telling me I was maxed out at 40mg, and were pushing the idea of Cabergoline. I hate pills, side effect city so I resisted. What do they know anyway? Sure as hell not enough about my disease till they've lived it.Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com0tag:blogger.com,1999:blog-3239233599531917576.post-76447477875581802362011-11-14T09:08:00.000-08:002011-11-14T09:08:49.804-08:00Cost Of Surgery(In response to my anonymous poster) <br />
<br />
I had surgery in December 2006 for a 2.3cm pituitary macroadenoma. There were no complications, no CSF leak, etc. I stayed overnight at UCSF and was released by 11am the day following surgery. My insurance at the time was Health Net in California. My surgery cost almost $35,000. My copay was $250, that's all I paid out of pocket.Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com1tag:blogger.com,1999:blog-3239233599531917576.post-7516163275514340712011-10-18T10:01:00.000-07:002011-10-18T10:01:39.432-07:00My Acro MonsterIn response to an anonymous poster who didn't believe I looked like I physically had Acromegaly, here are before and after pictures. Oh, and thanks for the comment since I certainly don't wish to look like an Acromegalic :-) I never wanted to post my worst pictures because I was embarrassed and ashamed of the "monster" I felt that Acromegaly turned me into. But if it helps others, here it is. I'm including my reply to this person, although I forgot to include all of the physical signs of Acromegaly that I had, sorry my memory is still not the best. Another I can mention is I started developing an under bite and TMJ. <br />
<br />
<div class="separator" style="clear: both; text-align: left;">My Acro Monster (Pre- Surgery 9/2006, Surgery 12/2006)<br />
<a href="http://1.bp.blogspot.com/-bD7da-Bd3JQ/Tp2nenXbNlI/AAAAAAAAHnE/gnijzLJsOwY/s1600/acromonster09-06.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="255" width="200" src="http://1.bp.blogspot.com/-bD7da-Bd3JQ/Tp2nenXbNlI/AAAAAAAAHnE/gnijzLJsOwY/s400/acromonster09-06.jpg" /></a></div><br />
<div class="separator" style="clear: both; text-align: left;">Almost 5 Years Post Surgery (6/2011)<br />
<a href="http://3.bp.blogspot.com/-fxyOuZMfiDU/Tp2r7G9zP9I/AAAAAAAAHnc/yciT_G_dlgU/s1600/jen06-11.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="238" width="200" src="http://3.bp.blogspot.com/-fxyOuZMfiDU/Tp2r7G9zP9I/AAAAAAAAHnc/yciT_G_dlgU/s400/jen06-11.jpg" /></a></div><br />
<blockquote>"Yes, I believe my Acromegaly may have been caught early. I did have the outward signs before I had surgery. Some of my physical symptoms of Acromegaly were: I gained 30 pounds, my nose and lips enlarged, my skin darkened and thickened, my brow started lowering and my eyes became further recessed. I had acne, I grew more facial hair. I also developed the body type of the Acromegalic with a barrel-like chest, and spade-like hands and feet. Going on a diet, having surgery 5 years ago, and the fact that I'm now on 40mg of Sandostatin every 3 weeks has gone a long way towards getting me back to looking normal, although I don't feel completely normal on the inside. I still have large knuckles and spade-like hands and feet, although my tissue swelling has reduced immensely. I haven't posted one of the worst pictures of myself before surgery, but I can do that so you can see more of a difference. Truthfully I'm embarrassed at the monster I became. This is my picture timeline." <br />
<br />
<a href=" http://sbux-addict.blogspot.com/2007/07/picture-timeline.html">My Picture Timeline</a></blockquote>Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com3tag:blogger.com,1999:blog-3239233599531917576.post-42196255992294145892011-09-12T16:00:00.001-07:002011-09-12T16:00:53.873-07:00Raw Food DietI've been trying to change my diet for my health the last few years since I've had Acromegaly and as a result, high blood pressure. I grew up on a high dairy diet (I loved milk, cheese, ice cream and eggs), then as an adult I transitioned to a higher protein, higher fat diet (thank you fast food) which also included high dairy. It seems a 100% raw food diet may be much more beneficial than I first thought. When I tried to go raw before I didn't stick with it, in part due to habit and societal reasons. What I didn't realize at the time, was that I was also probably in a detox phase that was uncomfortable. If I can find the motivation I'm going raw/organic. It's sobering to think my own diet may have caused my Acromegaly. I wish there was a way to cure or reverse the condition without medications. I've already transitioned to a very low salt diet (way under 1500mg/day) and have lowered my blood pressure to a normal level so that I don't need blood pressure medication anymore. My skin also looks better, it's no longer super dry to the point of flaking, and I have less acne.<br />
<br />
<a href=" http://kristensraw.com/why_raw_details_benefits.php">Why Raw Food?</a>Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com4tag:blogger.com,1999:blog-3239233599531917576.post-55494615743233339782011-05-04T10:53:00.000-07:002011-05-04T10:58:10.354-07:00Acromegaly Connections Chicago Event 5/21Again, for any interested. Click the link below, when the image comes up in a new page you can click again to enlarge the details.<br />
<br />
<div dir="ltr" style="text-align: left;" trbidi="on"><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-AzMJQTvFcDA/TcGS0rceW7I/AAAAAAAAHj0/hmchTJ3BpcI/s1600/chicagoevent5-21-11.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="640" src="http://4.bp.blogspot.com/-AzMJQTvFcDA/TcGS0rceW7I/AAAAAAAAHj0/hmchTJ3BpcI/s640/chicagoevent5-21-11.png" width="494" /></a></div></div>Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com0tag:blogger.com,1999:blog-3239233599531917576.post-71802563140870671312011-04-21T09:37:00.000-07:002011-04-21T09:37:47.175-07:00Mini UpdateI've been lifting weights a few times a week, and jog/walking a few times a week. I've done a lot of online research. I got a lot of useful information from <a href="http://www.bodybuilding.com">Bodybuilding.com</a> on proper lifting techniques, they have some great videos. <br />
<br />
The good news is I've been feeling so much more energy. I haven't been as depressed. I still have some issues with long distance driving causing me fatigue. And I still get extremely irritable, usually the week before my Sandostatin shots, as if the medication is wearing off. I hate everyone that week :-) I've told my children, you know the drill - ignore Mommy this week, I'll probably say a lot of horrible things that I really don't mean. I can't seem to control my outbursts even when I consciously try. <br />
<br />
I've also noticed sometimes I still get the neck pain and headache on the left side. What's worked for me is a muscle relaxant. Once I've literally knocked myself out with that so I can relax and rest for a few hours, I feel wonderful afterward. I wish I didn't need my drugs, but they can be helpful when used carefully.Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com2tag:blogger.com,1999:blog-3239233599531917576.post-80384834589630722442011-04-20T20:06:00.000-07:002011-04-20T20:06:54.784-07:00Acromegaly Connections Event 4/30I received an email about an event in California that some may find interesting, details below.<br />
<br />
<div dir="ltr" style="text-align: left;" trbidi="on"><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-dqQn7rGAfvQ/Ta-dNo9AqtI/AAAAAAAAHjo/VzXDgEPo_xA/s1600/viewer.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="640" src="http://1.bp.blogspot.com/-dqQn7rGAfvQ/Ta-dNo9AqtI/AAAAAAAAHjo/VzXDgEPo_xA/s640/viewer.png" width="494" /></a></div><br />
</div>Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com2tag:blogger.com,1999:blog-3239233599531917576.post-20152322707282341772011-02-02T14:19:00.000-08:002011-02-02T14:22:50.968-08:00Fantastic News!<div dir="ltr" style="text-align: left;" trbidi="on">I had lab work done in January, about 6 months since I changed from Sandostatin 40mg every 4 weeks to every 3 weeks. My GH went from 1.8 to 0.94. IGF-1 went from 379 to 356. I've been on Sandostatin around 4 years now and my numbers have never been so low, my GH had never been under 1.0 with the OGTT. My endo also stated based on my new MRI it's possible that the residual tissue may be shrinking a little. I see my endo again in June and may add Cabergoline to the treatment then. </div>Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com3tag:blogger.com,1999:blog-3239233599531917576.post-42314167547940764382010-11-02T22:37:00.000-07:002010-11-02T22:41:56.029-07:00Meeting in SF<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" height="236" src="http://2.bp.blogspot.com/_3NG2luvlfpc/TNDu0nOsd-I/AAAAAAAAFwg/f-FPhQGffN8/s320/IMG_2759.jpg" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">[Karen, Ellen, Tanya, Jenny]</td></tr>
</tbody></table><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/_3NG2luvlfpc/TNDu0nOsd-I/AAAAAAAAFwg/f-FPhQGffN8/s1600/IMG_2759.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a></div><br />
Ellen (way to go again Ellen!) helped organize our meeting with Tanya Angus, and her mother Karen in SF. It was great to meet them, and welcome them to our California Acromegaly family :) They were very gracious, even about meeting us right after their arrival in SF. They're amazing people, and I'm really grateful that they're both putting their lives in the spotlight to bring more attention to Acromegaly.<br />
<br />
My own personal choice was to expose my life with Acromegaly online, and that's a much easier avenue to take. I still have fears and other issues with bringing the subject up, even among people I consider close friends. I have a fear of public speaking that I've never overcome, so having people like Tanya who can be a spokesperson for herself, and everyone else with Acromegaly, is very appreciated. <br />
<br />
I really hope Tanya finds a cure with her unique case (unresponsive to treatment as she keeps growing - at 6'11" now), or at least more effective treatment. Acromegaly is such a horrible disease, and it saddens and angers me that her case wasn't caught quicker. There's not only the physical aspects of the condition to deal with, but the mental aspect that contributes to our delayed diagnosis. Personally, when I started gaining weight and my hands/feet became larger, I became depressed, and figured I had just "let myself go." It's almost like I was in denial without realizing it. I thought I was a freak, or just weird with certain symptoms - like my continuing lactation years after having my last child - that I even feared telling my doctor my symptoms! And along with depression I had feelings of being disassociated from myself, and to a certain extent I still do now, as though I don't know myself or my feelings anymore. I believe these feelings are due to Acromegaly, as well the depression.<br />
<br />
The symptoms of Acromegaly can be so insidious, that we fool ourselves into thinking there isn't anything wrong. Thanks so much to all who have come forward to share their stories. <br />
<br />
Follow Tanya's story:<br />
<br />
<a href="http://www.tanyaangus.com/">Tanya Angus - Official Site</a><br />
<br />
<a href="http://www.ktnv.com/Global/story.asp?S=13339721">ABC 13 News - Woman with gigantism is back from San Francisco with new doctor's orders</a>Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com4tag:blogger.com,1999:blog-3239233599531917576.post-9104670261831130532010-10-28T15:17:00.000-07:002010-10-28T15:17:19.051-07:00UCSF UpdateI drove into UCSF yesterday to meet my new endocrinologist, since my old one transferred elsewhere. My day started off well with a free drink coupon from Starbucks because they were closed due to lack of hot water! But I ended the day kind of frustrated and disappointed. <br />
<br />
I've had very minimal improvement on 40mg Sandostatin every 3 weeks. I've been looking into other options. Based on my MRI she stated that it doesn't look like I'm a candidate for re-operation. I'd really hoped I could avoid the expensive monthly Sandostatin shots, call me optimistic. I do stress about insurance continuing to pay that costly bill every month for me, although I have no basis for worry. <br />
<br />
She also reminded me that Gamma Knife Radiation is an option. Maybe I'll try it, when they can guarantee I'll turn into a superhero. Forget Acromegaly, I want to be She-Hulk! :-D<br />
<br />
The other option my prior endo and this one are pushing on me is trying the lowest dose of Dostinex/Cabergoline. I remember having some side-effects when I was on it before. I always seem to have side-effects with any drug, so I try to avoid them. Maybe I'll stop being so stubborn, resisting their advice. I'm a bad patient.Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com1tag:blogger.com,1999:blog-3239233599531917576.post-87131079744137052242010-09-27T09:24:00.000-07:002010-09-27T09:41:22.092-07:00The Latest..Good news. I'm on a new dosing schedule for Sandostatin 40mg - every 3 weeks now instead of every 4 weeks. I was tested after 3 months on the new dosing schedule. GH is 1.8, IGF-1 is 379. But, my numbers were basically the same on Sandostatin 40mg every 4 weeks. I'd hoped to see a dramatic improvement. I'll be seeing a new endocrinologist at UCSF end of October to discuss whether I should go back to the old dosing schedule, and a possibility of re-operation (slim in my opinion based on my MRI).<br />
<br />
Also on Sandostatin side effects, my blood pressure may be slightly higher. I haven't been taking blood pressure readings every day, since I've been jogging daily and at my doctor's appointments my blood pressure is always low enough. And any other issues are negligible, although I do worry about potential damage to gallbladder. <br />
<br />
On another note, I believe the high doses of Sandostatin had been causing almost daily muscle pains. Any time I exercised (it was very infrequent before), or did even a small repetitive activity I would have muscle pain for days. Since I started jogging daily (jogging or jog/walking 15-30 minutes) I haven't noticed the muscle pain, so that is wonderful! It seems I may have less Sandostatin side effects due to exercising, even a small amount daily. I did approach my new exercise plan carefully and slowly, and I don't push myself too hard. I'm naturally a very lazy person, but I'm realizing that not exercising doesn't seem to be an option for me. It's imperative to my health.Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com4tag:blogger.com,1999:blog-3239233599531917576.post-18779192813050608362010-08-05T09:30:00.000-07:002010-08-05T09:30:17.752-07:00WORLD'S TALLEST MAN: STILL GROWING SUNDAY, AUG 8 at 10/9c on TLC<a href="http://www.youtube.com/watch?v=Rf-lcBzZwC4">Sneak Peek</a><br />
<br />
At over 8 feet tall, Sultan Kosen is the world's tallest man ... and he is still growing! In this all-new TLC special, we follow his extraordinary journey around the world not only in search of a cure to his gigantism but also to overcome his lonely existence.<br />
<br />
As young boy in a Turkish village, Sultan dreamed of a simple life - to grow up, have a job and find a wife. At the age of 8, Sultan began to grow uncontrollably and by his teenage years, the extreme growth had forced him into isolation. Continuing to grow, he soon became the "World's Tallest Man" which brought Sultan fame and opportunities to travel around the world. While confronting his dangerous condition with medical attention, Sultan begins to seek out relationships. More than anything, Sultan longs for a wife and looks for love online, resulting in his first date ever. He also travels to the US to meet America's tallest man, former Harlem Globetrotters George Bell, and is encouraged with the new friendship. Although still growing, Sultan now lives with newfound confidence and bravery despite the continued threat to his life and his dreams.Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com0tag:blogger.com,1999:blog-3239233599531917576.post-1382630606149202952010-05-12T13:23:00.000-07:002010-08-05T09:52:34.491-07:00Changed Verdict - Side Effects of SandoI wanted to edit this post because I thought I had my answer and I believe now that I was wrong. I don't believe that arthritis is the cause of my muscle pains at all. I always read any drug information inserts as soon as I buy a prescription. I don't remember an insert stating this side effect of Sandostatin. Looking at their drug insert information online, muscle pain is not even listed as a side effect of this drug. But a simple google search tells me that statins can cause muscle pain. I'm going to mail Novartis to see what they say about this. <br />
<br />
* * *<br />
<br />
<b>And the verdict is (most likely) - Arthritis!</b><br />
<br />
Well the good news is my blood tests came back good. I don't have chronic fatigue (although I've been exposed to Epstein-Barr like many people), and I don't have Fibromyalgia. My heart was good, no diabetes, no low levels of potassium or Thryoid or anything else. Did have slightly high LDL (by like 2 points), and slightly low HDL(2 points again). So naturally, I'm feeling a bit like a hypochondriac at this point! :-) Is my pain in my head?? Well, it is literally many times :-)<br />
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I did ask my doctor for pain medication to manage my chronic pain since OTC doesn't help anymore. I still have headaches/neck aches, and right side sciatic pain. And I'm sick of dealing with it so I guess I'll take my chances with pain meds. To my surprise, he handed me Arthrotec. Which is an arthritis pain med! I already knew I had degenerative disc arthritis in my back due to my sciatic pain, which began last year and has been bothering me consistently. And my blood test did show a high sedimentation rate which indicates inflammation like arthritis. But I never thought the other symptoms I had could be arthritis related. I have an aunt with rheumatoid arthritis and I certainly don't have her symptoms or limited mobility! I do have joint pains sometimes, but most of the time it's muscle pain, or sciatic pain. Anyway, a Google search also confirmed chronic fatigue is a symptom of arthritis, which I also didn't know. So maybe I have my diagnosis finally! I'm happy to have some sort of answer, so I can know how to properly treat myself. And I'll be looking into seeing a Rheumatologist most likely, although I'm not sure how helpful that will be considering I don't like taking medications.<br />
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<b>ETA</b>: Arthrotec didn't work unfortunately. I only took one pill and had continuous stomach pain, and a bloated/full stomach feeling all day. I did eat before taking the pill as directed. The pain was like hunger, but once I ate I felt overly full and like I had reflux/the food wasn't digesting at all. And I didn't notice a significant reduction in arthritis pain either.<br />
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I'm also noticing my posture has been horrible. Trying to maintain good posture all day seems to help with headaches and sciatic pain, although my back muscles are so weak that it makes my back ache! I'm hoping to join a gym and increase my muscle to help combat the arthritis.Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com2tag:blogger.com,1999:blog-3239233599531917576.post-63278593238088890852010-04-25T23:38:00.000-07:002010-04-25T23:53:47.735-07:00More Potassium and a Tip on SandoFirst I'll give the Sandostatin LAR tip, because I'm going to ramble like usual :-) I thought I posted it here somewhere but I guess maybe I commented somewhere else. Anyway, people on forums have complained about the shot hurting, or getting a lump since it is a bigger needle, and the Sando is thick. When I first started getting the shots, I tensed the leg on the side I was getting the shot, and I felt pain shoot down my leg, along with developing a large, painful lump. Maybe I'm getting scar tissue and that's why getting the shot is so easy now, or maybe I'm doing something right. I make sure that I don't stand on the leg on the side that's receiving the shot, and I close my eyes and concentrate on not tensing either. It also helps to massage the area right after the shot. But truthfully, I get a small lump now and I don't massage anymore, and it's easy to deal with. I don't even feel the needle go in usually.<br />
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And...I'm onto my next theory why my BP is so high (still prehypertensive). I'm guessing I've been eating a high sodium diet that's also WAY too low in potassium. High sodium..duh..too much fast food/packaged junk. My BP goes up even after one fast food meal. I realized I've gradually cut way too many things out of my diet, probably out of laziness. Even eating at home, I thought eating smaller portions of meat was better, and added some carbs with it. I've also been boiling meats which I read causes it to lose nutrients. <br />
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I'd asked my doctors to test all of my levels of like everything possible in years past. So I assumed they checked potassium, but maybe not. I'm going to double check. I do have ALL of these symptoms of <a href="http://www.buzzle.com/articles/potassium-deficiency-effects-of-low-potassium.html">potassium deficiency</a>: fatigue, myalgia (muscle weakness), acne, dry skin, memory loss, heart problems, digestive problems, ringing in the ear.<br />
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So I'm on week 1 of a new diet. No pill supplements since I've read they can be dangerous. Larger portions of meat like steak, potatoes, bananas, OJ, etc. Less packaged crap/fast food (I really didn't add much table salt to anything, just ate the wrong things). I should also mention prior to this diet I'd pretty much completely cut out caffeine, besides green tea a few times a week. And soda or coffee maybe once a week. So far I'm feeling more energy so that's good. Seems like less bloating and water retention. Digestive stuff better. Lost a few pounds. Feeling less cravings. Usually I crave sugar constantly. Haven't taken many BP readings yet but had a couple good ones. And I'm also aware that I may trade off a better BP for higher cholesterol levels with eating more meats (like I'll take time/remember to make sure it's not fatty every time I shop). I'll update later, along with info from the doctor about whether my potassium level was ever checked.<br />
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<a href="http://www.healthline.com/galecontent/potassium">Healthline</a><br />
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<a href="http://www.life123.com/health/vitamins/potassium/potassium-deficiency-symptoms.shtml">Life123</a><br />
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<a href="http://www.wellsphere.com/obesity-article/can-potassium-reverse-high-blood-pressure/695318">Wellsphere</a><br />
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<a href="http://www.mayoclinic.com/health/low-potassium/MY00760">Mayo Clinic</a>Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com2