Advertisement
Do you suffer from chronic pain?
Learn how straightening up can ease your pain
Chronic pain management tips
Learn how straightening up can ease your pain
Chronic pain management tips
More DailyStrength
|
New member
|
Watch this |
| View More Posts Ignore |
Hello everyone,
I'm a new member to this group. And want to share my experience, though it can sound similar to some other members' experience. I'm from Russia. In December 2009 MRI showed microadenoma. At that time I didn't understand wheather it is bad or not, and lived my life as it is though I felt that there's something wrong (mood changes, weight gain, big gaps between periods). Year 2010 passed. At the beginning of 2011 diagnose was set - acromegaly. It was so strange to get to know about it. And I didn't realized the "whole picture" of this disease. So, only several months later in August 2011 had transsphenoidal surgery. My endo seemed to be familiar how to cure such patients, but after all that have been done I understand that some points were missed. All I have to do now is to work on mistakes, not without your help. Due to this support forum I've discovered information that one has try to take octreotide before surgery in order to shrink the tumor and better surgery results. That should have been done, of course, before the 1st surgery, but who knew... Here are my IGF-1 levels (ng/ml): 1250 - June 2011 before surgery 1116 - 1 month after surgery 909 - 2 months 782 - 3 months 999 - 7 months 1356 - right now So, surgeon removed only a part of tumor, he didn't told about that. Later I went to another endo, and she told not to rush into the 2nd surgery, but try octreotide. Here we don't have Sandostatin LAR to get, there is only generic medicine available, the same as Sandostatin LAR, but not original and produced in Russia. And now finally after 4 month of gathering all needed documents and all the procedures in health care services I've got my 1st injection of octreotide 20 mg. And I feel that my body respond to it. But surely as my IGF is extremely high (I even ask myself how do I get enough strength to continue working?), to feel a better effect from medicine I need more dosage. So, you guys, you all helped me a lot in understanding what to do and what to expect. This is my story till now. I'm going to take 6 injections of octreotide and then to have MRI control to see the results. Endo wants to change dosage only after the 3rd injection, and I think may be it'll be better to increase dosage earlier?.. Remnant tumor is big, 20*20*20 mm and there is a danger that it can be invasive in cavernous sinus. So, how likely it won't invade cavernous sinus due to taking octreotide and later will be removed completely?.. If you do have such experience and can provide information, please, I would really appreciate it. Thank you in advance. Take care. Mallina Posted on 08/17/12, 04:41 am |
| 8 Replies | Add Your Reply |
| View More Posts Ignore |
Best wishes, Mallina.
Not all doctors recommend octreotide before surgery. Your IGF is indeed high again, sorry to hear that. I was at around 1000 before surgery. But octreotide (or lanreotide) controls this well for many people. It worked well (statistically) for me when my numbers went up after surgery. Unfortunately I reacted badly to it and had severe intestinal/gall bladder pain digestive upset. I am now only on cabergoline. This has kept my GH down but my IGF is still slightly higher than it should be. Cabergoline is not used often on its own for acromegaly, although it is quite common to have it added to octreotide. This is another option for you if octreotide does not work well enough on a larger dose of octreotide. Cabergoline is relatvely cheap as it is available as a generic. I will leave other people to give their opinions on second surgery. I think a lot of people find the second surgery more of a problem than the first. John 
|
|
|
|
||
| View More Posts Ignore |
John, thanks for your reply,
That's a pity in my case that doctor wasn't strongly sufficient about cure strategy, because taking octreotide before first surgery could result into successful operation. Regarding cabergoline, I've used to take it for 3-4 month this year in order to "calm down" pituitary functions (and GH also). Blood tests shown that on it's own cabergoline works only for prolactin. Dosage was high - 2 mg (0,5*4), I felt rather foggy and difficult to concentrate, sleepy in first half of the day, so I quit taking it. May be later endo will join it to octreotide. Anyway, to check whether octreo suppresses GH or not I suppose I have to do the blood test for IGF-1 in 3 weeks after first injection. The same after 2nd and 3rd injections. Because I want to see evident proof that medicine works. I hope this will be objective. Take care, Mallina
|
|
|
|
||
| View More Posts Ignore |
Hi
Although a lot of endocrinologists do recommend the octreotide before surgery, as John said not all do, and even when they do It doesn't always make a difference (I took it for 6 months prior to my surgery and it didn't alter the size of my tumour or reduce my IGF-1). I am taking it again after a surgery that removed a large proportion of my tumour, and whilst it isn't fully controlling my hormone levels it has further shrunk the tumour. I hope that is somewhat reassuring for you.
|
|
|
|
||
| View More Posts Ignore |
hi malina..I think we are the ones who are leading the way and the medical profession are still trying to find the best routes ..I think because we all respond in different ways..its quite hard to have the simple answer..
|
|
|
|
||
| View More Posts Ignore |
Penny77, J0KEYJ,
Ok, I've got what you said. There is one more week before blood test, so, I'm waiting patiently for it. Will post the results later...
|
|
|
|
||
| View More Posts Ignore |
Cabergoline has worked on my GH; my dose is 3 * 0.5mg, twice a week (i.e. 3mg a week).
If you look at the following study: http://jcem.endojournals.org/conten... you will see general success in controlling GH, IGF and prolactin but with a large amount of variability. What works for some doesn't for others. For me, side effects basically wore off after a few months, though the hospital did start me very low (0.25mg/week) and moved me up slowly. It is more often used with Sandostatin or Somatuline though. At the time I had my surgery, my endocrinologist was one of the foremost acromegaly rearchers in Europe, and he did not believe in pre-treatment with octreotide, John
|
|
|
|
||
| View More Posts Ignore |
Mallina, there seems to be an ongoing debate in the treatment of Acromegaly as to "cure" and "control" within the medical profession. Some will say if the tumor is successfully removed then a "cure" has been achieved. Others will say that the impacts of the tumor remain to some extent and that cure is impossible, that the best we can hope for is maintaining control and keeping the hormone levels in balance.
I've been battling this condition since 2000, I've had 2 surgeries and 1 gamma knife procedure, I've been on Sandostatine since 2000 along with a host of hormonal supplements as well.....though everything is in the normal ranges now, if I stop the injection my IGF-1 level shoots up. Any remaining tumor cells are alive and kicking. I tend to side with the no cure factions.....that control and maintenance is my only best bet. Each patient is different though. Some have a complete remissions, some have lingering effects and others have constant battles........ The key advice is that we get treatment from a doctor that is knowledgeable about Acromegaly and that we treat it aggressively..... be it medication or surgery. Unfortunately, this condition is still relatively unknown and new advances are being made daily in the diagnosis and the treatment we need. Stay strong and positive.........
|
|
|
|
||
| View More Posts Ignore |
Lifespalette, thanks for your message.
I try to be strong, really. Though it needs a lot of strength. I hope octreotide will shrink the tumor and then I'll go through the 2nd surgery. Fortunately, I live in a big city and here are two clinics where surgery could be done. And I would agree that control is the most suitable word to be used in the terms of acromegaly. Best wishes, Mallina p.s. doctor said there is no need to do blood test in 3 weeks after first injection. so, I'm going to do the second, and then do a blood test for IGF-1 in next 3 weeks.
|
|
|
|
||
| Add Your Reply |
Advertisement
More From Around the Web
test top
test bottom
