tag:blogger.com,1999:blog-3239233599531917576.comments2022-03-27T18:30:15.424-07:00Acromegaly RamblingsStarbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.comBlogger147125tag:blogger.com,1999:blog-3239233599531917576.post-40353557631481375492021-08-18T08:56:56.076-07:002021-08-18T08:56:56.076-07:00You already had really pretty facial features to s...You already had really pretty facial features to start with, regardless of whether or not there was any noticeable change from acromegaly. However I'm really happy that you are happy with your results. You are a strikingly beautiful woman!VoorTrekker88https://www.blogger.com/profile/14036137583593865145noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-37051794961919477742017-10-14T03:10:00.691-07:002017-10-14T03:10:00.691-07:00Thanks for sharing about the meeting of organizati...Thanks for sharing about the meeting of organizations. My cousin planned her office Christmas party at one of the big <a href="https://eventup.com/venues/san-francisco-ca/" rel="nofollow">meeting space San Francisco</a> last year. Chocó cake and cookies were delicious and gave beautiful paintings as gifts to all guests. Overall it was really an enjoyable event.Wenni Donnahttps://www.blogger.com/profile/00761111053828940919noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-86094103285201854832017-07-07T16:10:45.800-07:002017-07-07T16:10:45.800-07:00I know this is an old post but I am hoping someone...I know this is an old post but I am hoping someone from the San Francisco Bay Area sees this posting. I am in need of 8 people to come in to our office here in San Jose, CA to evaluate the instructions that come along with a new medication delivery device used to treat Acromegaly. Individuals will only simulate the use as we are not a clinical trial. <br /><br />Pays $150 for a 45-60 minute session.<br /><br />We are trying to verify the instructions for use are clear and easy to read and that it's ready for distribution.<br /><br />Please contact Jeana @ 408-834-8443 if you are interested in participating.<br /><br />Thanks so much!Christinehttps://www.blogger.com/profile/07215453508001180970noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-5684265849506164692017-06-21T15:35:30.260-07:002017-06-21T15:35:30.260-07:00Hi,
I know this is an old post but I am hoping ...Hi, <br /><br />I know this is an old post but I am hoping someone from the San Francisco Bay Area sees this posting. I am in need of 8 people to come in to our office here in San Jose, CA to evaluate the instructions that come along with a new medication delivery device used to treat Acromegaly. Individuals will only simulate the use as we are not a clinical trial. <br /><br />Pays $150 for a 45-60 minute session.<br /><br />We are trying to verify the instructions for use are clear and easy to read and that it's ready for distribution.<br /><br />Please contact Jeana @ 408-834-8443 if you are interested in participating.<br /><br />Thanks so much!<br /><br />Anonymoushttps://www.blogger.com/profile/04185266312483920795noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-43133817004243467682017-03-11T09:54:42.696-08:002017-03-11T09:54:42.696-08:00Thanks for sharing Lorena. I hope the Somavert wor...Thanks for sharing Lorena. I hope the Somavert works for you. Starbucks Addicthttps://www.blogger.com/profile/00713635628716309428noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-45889044640687097942017-03-10T12:53:46.006-08:002017-03-10T12:53:46.006-08:00Hi Jenny
I have today my somavert 10 mg injection ...Hi Jenny<br />I have today my somavert 10 mg injection #48 and so far I only had side effects the first three days, after that nothing else. I think it is working because I can see my face less swelling and my foot and toes better too.I am waiting for my last labs result to come and check if my IGF-1 dropped , In Dec 2016 I had 718, I hope It went down. I can not inject myself, so my husband or a cousin do it for me every night, thanks God.<br />Best for you.<br />LorenaMrs L. Callicohttps://www.blogger.com/profile/08484008504291341420noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-88155507449649493582017-03-10T12:34:51.586-08:002017-03-10T12:34:51.586-08:00Hi I am Lorena from Miami FLorida I am 45 years ol...Hi I am Lorena from Miami FLorida I am 45 years old and I started having some of the symptoms around 2009 when I was 38. I was diagnosed with acromegaly last June 2016 and 3 weeks later had my surgery to remove my macro adenoma.My symptoms included swelling, my hands and feet turned a bit bigger , excessive sweeting, constipation, gaining 12 lbs in 1 year, snoring. My neurosurgeon Dr Komotar , my ENT was Dr Sargi and my Endocrinology is Dr Kargi. All from University of Miami Miller School of Medicina at UM Hospital. But my IGH-1 did not went down (733) and after 90 days I needed a second surgery to remove the residues, after this second chance my IGF-1 did not went down so this January 2017 I started a daily injection of SOMAVERT, which is a Grow Hormone receptor antagonist . I just had my labs after 6 weeks of treatment and I hope this is working on me because I can see less swelling of my face, fingers. I have my next Dr appointment in 2 weeks I hope my number has dropped. Thanks for this blog, this disease in uncommon, and is not easy to exchange experiences with anyone else out there. Mrs L. Callicohttps://www.blogger.com/profile/08484008504291341420noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-10623704638924318502016-12-13T09:26:18.448-08:002016-12-13T09:26:18.448-08:00Anyone who needs surgery, I swear by Dr. Shafa at ...Anyone who needs surgery, I swear by Dr. Shafa at UCLA.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-16105646625378052372014-12-22T19:32:46.843-08:002014-12-22T19:32:46.843-08:00Thanks for sharing Randi. I agree, a positive outl...Thanks for sharing Randi. I agree, a positive outlook and trying to live life to the fullest is the best way to beat the disease. Starbucks Addicthttps://www.blogger.com/profile/00713635628716309428noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-42093364120687471272014-12-22T11:09:33.484-08:002014-12-22T11:09:33.484-08:00It is Not too young and those younger are usually ...It is Not too young and those younger are usually diagnosed with Gigantism----the same disease!<br /><br />I am an Acromegaly survivor---diagnosed 23 years ago and told my body was shutting down rapidly from Associated Large Tumor on My PIT gland and High HGH Levels which were beginning to attack my internal organs. Yes My case was bad as are others--but a word of advise--DON"T GIVE INTO THIS DISEASE! DEAL WITH IT AND LIVE BUT DO NOT BECOME A MEDICAL PATIENT LIVE YOUR LIFE TO ITS FULLEST AND DEAL WITH THE APPOINTMENTS AND MEDS BUT LIVE! That is the only way to beat this disease!Randi Levinhttp://www.themuffinlady.comnoreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-74566182974644756382014-12-15T20:21:47.135-08:002014-12-15T20:21:47.135-08:00Hi there. Thanks for the comment! I wouldn't b...Hi there. Thanks for the comment! I wouldn't be surprised if my symptoms are side effects of elevated GH or acromegaly. I definitely still have elevated GH. But I don't believe I've had an endocrinologist tell me those are symptoms of elevated GH or acromegaly. And I don't believe I've seen those symptoms listed as side effects of GH/acro online, besides muscle soreness? Of course, I could also be forgetful, memory isn't what it used to be. I'm interested in your source, or personal experience if you'd like to share via blog or email. Good luck to you in your journey as well.Starbucks Addicthttps://www.blogger.com/profile/00713635628716309428noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-48795421579608318932014-12-15T01:23:39.755-08:002014-12-15T01:23:39.755-08:00hi there- so appreciate your candor and bravery in...hi there- so appreciate your candor and bravery in sharing your experiences. reading what you suspect are side-effects to your injections, esp. sun-sensitivity, flushing, palpitations, muscle issues, i am reminded that these are also associated with elevated GH and with acromegaly itself. that's a lot like what i had pre-surgery gor macroadenoma at ucsf. so i wonder if your GH control is optimal. i've also seen stanford's dr.k so know you are im good hands. congrats on your progresd. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-91306507705901000302014-05-21T10:18:42.746-07:002014-05-21T10:18:42.746-07:00Wow, that seems unusually young for a diagnosis of...Wow, that seems unusually young for a diagnosis of Acromegaly. Most are diagnosed in the 30-50 year old range as far as I've heard. I'm interested to hear how you were diagnosed so early? <br /><br />I believe either center would be sufficient for surgery. Personally I had surgery at UCSF, but my doctor at the time recommended Stanford. My insurance didn't cover Stanford back then. The most important thing would be to choose a larger facility like UCSF or Stanford that performs a lot of pituitary surgeries. I would hope you'd have the best chance for a successful surgery by choosing a facility that has so much experience treating your specific condition. Acromegaly is a condition where surgery is usually suggested to be performed as quickly as possible, if you're a surgery candidate. <br /><br />I don't think you'll get an immediate response on my blog. It'd probably be quicker to consult forums such as Acromegaly Community forums, Daily Strength Acromegaly forums, or Facebook pituitary communities to get a better idea of personal experience with those facilities. Good luck to you!Starbucks Addicthttps://www.blogger.com/profile/00713635628716309428noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-62371506459385466822014-05-20T17:25:56.961-07:002014-05-20T17:25:56.961-07:00Hi,
I have acromegaly and I am 20 years old! I wa...Hi,<br /><br />I have acromegaly and I am 20 years old! I was wondering in everyone's opinion which center is best to have the surgery? UCSF or standford?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-80381644027982888092014-05-12T21:43:24.515-07:002014-05-12T21:43:24.515-07:00Hi Jenny,
I couldn't agree with you more. H...Hi Jenny, <br /><br />I couldn't agree with you more. Hence the reason I stopped Somavert also. Side effects were terrible and knowing I had to self inject DAILY was a huge stress for me. I'm updating my blog. Had my visit in Toronto today for my 2nd opinion. <br /><br />All the best,<br />JulieJulie S.https://www.blogger.com/profile/00177725669562224200noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-79805161455540914762013-12-27T07:06:06.291-08:002013-12-27T07:06:06.291-08:00Oh Jenny I so feel your rollercoaster ride. I'...Oh Jenny I so feel your rollercoaster ride. I'm happy that you found an Endo who is willing to help you as this is a Chronic Disease and we need constant monitoring and care. You will begin combining Sando and Somavert. As you read my blog, I did the same but without any luck. I had to get family involved cause I was really sick my first week (flu like symptoms)Very common when starting Somavert. As a new patient to Somavert, you need to get 4 initial injections. I actually had to stop after 3 cause I almost passed out (anxiety). I did have constant contact with a rep from Somavert which was helpful. However, I really did not feel well on those meds. I only injected in my stomach and buttocks and even then, I stopped injecting in my belly and just used my buttocks. I truly wish you lots of luck with this new treatment plan. Yes, I am happy that I am a good candidate for surgery again cause boy I'm not feeling well. Thinking of you lots, JulieJulie S.https://www.blogger.com/profile/00177725669562224200noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-19499932926190144892013-09-28T22:27:01.464-07:002013-09-28T22:27:01.464-07:00Thanks Julie. I'm glad if I can share and help...Thanks Julie. I'm glad if I can share and help out. I'm sorry to hear you're struggling :-( I agree the disease and the meds definitely take a toll on us. And treatment will vary from person to person. One of the best things we can do is listen to our bodies. It sounds like the Somavert really disagrees with you. I hope you find an alternate treatment that works. Starbucks Addicthttps://www.blogger.com/profile/00713635628716309428noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-55249121190906139892013-09-28T18:10:55.405-07:002013-09-28T18:10:55.405-07:00Hi Jenny,
I love reading your post as I know tha...Hi Jenny, <br />I love reading your post as I know that I am not the only one going through this alone. I'm sick and tired of this disease and its meds. The daily Somavert injections of 10mg has dropped my IGF-1 levels to a dramatic low of 180 but let me tell you I feel TERRIBLE all the time. I'm nauseated, fatigued, dizzy and can not even go for a walk to the corner store without almost passing out and vomiting (literally). I'm being followed with a new Endo and am in the process of meeting another new doctor to consult on Radio hopefully soon. I really think that all these years with the meds have had a toll on my body and mind. I'm still off work (since February) and will continue until all this is sorted out. I believe you that the effect you are having are all secondary to the meds. Thinking of you, Julie Julie S.https://www.blogger.com/profile/00177725669562224200noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-8241065313968887082013-08-25T12:11:29.733-07:002013-08-25T12:11:29.733-07:00I don't usually have a problem with anger outb...I don't usually have a problem with anger outbursts anymore. I did feel as though I was nutty as hell too! It's horrible to feel that way, and to feel so out of control. This is definitely a symptom of Acromegaly, or hormonal imbalance caused by it. Or maybe caused by some medications used to treat it and the multiple symptoms. If possible don't beat yourself up over it! I've had to forgive myself and let go of so much embarrassment over this. I had to realize this disease doesn't define me as a person. I'm not a bad person, although this disease has caused me to do bad things and feel that way. My outbursts were the worst right before I had surgery. I don't remember shaking, but I did feel enraged, and helpless to stop my behavior. And of course ashamed afterward. I also hit a point where I didn't trust myself anymore. I was afraid I would physically harm someone. At that point I started taking Lexapro which helped with my depression and anger. But what helped most was having surgery and taking the Sandostatin so my hormones were better regulated. After surgery my depression and extreme anger lessened so I didn't need Lexapro. On lower doses of Sandostatin I was easily stressed and angered, especially around the time I needed shots. Since being on 40mg I don't get stressed as easily, and I feel much more patient and more peaceful usually. I do still try to avoid things that I know will stress, aggravate or anger me though. For example I don't like crowds, I usually avoid shopping when there are more people around, I try to avoid driving during rush hour, I avoid people and situations - I've completely cut some people out of my life for my own health, etc. I realized I can't do things like camping because I can't sleep well and that will trigger an outburst. One of the biggest triggers for me is being fatigued and not getting enough rest. I hope you can find some peace. Maybe even something like practicing breathing or yoga might help. I tried it but it's not for me. Good luck! I'm available to chat further if it will help. I know how frustrating this is.Starbucks Addicthttps://www.blogger.com/profile/00713635628716309428noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-87340974721473702022013-08-24T22:30:01.816-07:002013-08-24T22:30:01.816-07:00Hey. Read about anger you have been experiencing. ...Hey. Read about anger you have been experiencing. Almost 7 years since my Pit surgery at Univ Fla and I take Somatuline monthly. Anyway, my anger outbursts are embarrassing but I can't help it. They don't happen daily but when they do occur I am sure I appear nutty as hell. Do you shake and stuff when this happens??Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-30888072765360313002013-08-19T23:11:09.226-07:002013-08-19T23:11:09.226-07:00No I haven't tried Somavert. I thought maybe l...No I haven't tried Somavert. I thought maybe laying down would help with injections, but I'm still getting a huge lump which I assume is from scar tissue. I didn't know you could take Sandostatin and Somavert at the same time. Thanks for the tip! Starbucks Addicthttps://www.blogger.com/profile/00713635628716309428noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-33184929448842691922013-07-10T18:33:53.438-07:002013-07-10T18:33:53.438-07:00Have you tried Somavert? I have a microadenoma and...Have you tried Somavert? I have a microadenoma and haven not had surgery. I use Somavert once a day but also I have had sandostatin under the skin, so there is no scar tissue. I took sandostatin/octreotide sub cu 200m four times a day instead of long acting because I didn't want to use it intramuscularly. You can also take both sando and somavert as long as your liver can handle it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-43371868485856568492013-07-09T09:50:45.487-07:002013-07-09T09:50:45.487-07:00Exactly.Exactly.Starbucks Addicthttps://www.blogger.com/profile/00713635628716309428noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-27931614578370565072013-07-09T09:26:34.881-07:002013-07-09T09:26:34.881-07:00The surgery you had did not sure your acromegaly? ...The surgery you had did not sure your acromegaly? Does this mean there is still tumor tissue causing the elevated IGF-1 levels?<br /><br />johnybearhttps://www.blogger.com/profile/05967804474442480747noreply@blogger.comtag:blogger.com,1999:blog-3239233599531917576.post-86316315670494247102013-04-17T08:14:53.179-07:002013-04-17T08:14:53.179-07:00This comment has been removed by a blog administrator.Pattihttp://www.pattimhall.canoreply@blogger.com