Hi John,

I actually had my gallbladder removed before I was diagnosed with acromegaly. This was another opportunity that the doctors missed to find out what was causing all of my ongoing medical problems.

I have read about gallbladder "sludge" and stones forming due to octreotide. The gall stones can be very small and become lodged in the duct as well, so I hope that you had a competent ultrasound technician.

There are certain foods to avoid if you have gall bladder diseases such as dairy products and alcohol. I am sure that you have researched this as you have mentioned the low fat diet.

I hope you can get relief from this problem soon.
Take care, Mish

My PCP had me scheduled recently w/ a surgeon to have my gallbladder removed after seeing the report from the gall bladder ultra sound that was done for the screening so that I can participate in the stageIII clinical trial for the octreotide implant. It showed sludge at the opening to the liver. My PCP said that could be a major source for the TERRIBLE & OVERWHELMING fatigue I experience. The doctor in charge of the study disagreed so we cancelled the surgery. I was told that it is normal for anyone taking "statin" drugs to have some sludge. I WANT THAT IMPLANT! I don't want those shots w/ the 18 gauge needles & I don't want the break through symptoms or the feeling that the shot is not lasting past halfway through the month and sometimes not even that long. The person I know who already has the implant feels FANTASTIC. (Here's hoping that will last the ENTIRE six months!!!!!) So, when the doc said as long as I don't have other symptoms, such as pain or nausea, to hold off, or at least to hold off if possible until the implant is in place, I agreed.

Also, John, the tether to the toilet & other issues were worse for me when I started with the 3X per day self injections in the tummy a year ago this April & have those issues have become much less severe over time. I switched to the monthly injection in June & then switched to a higher dose in Dec. I had 1 somatululine injection w/ NO side effects - it actually scared me & made me wonder if it was working at all! Now with the higher dose the issue is more constipation than the other. BTW, this drug is actually used for people on other chemoherapy to CURE diarrhea !!!!!

I hope you find some answers soon, John.

John/Mish,

Drinking a moderate amount of alcohol reduces the chances of gallstones.

Also, suddenly switching to a "healthy" diet, suddenly going for a low-fat diet increases the chance of gall stones (and of course gall sludge).

I was on octreotide (Sandostatin) for twelve months prior to my operation. I just continued a normal diet (with a healthy amount of fresh veg), we don't eat processed food generally as we tend to cook fresh, and did not avoid any foods in particular. I also had my fair share of curries on meals out, washed down with a pint of Cobra too.

Trys

Hi Trys-

I think that you are right about alcohol (in moderation) reducing the chances of gallstones formation. I did a quick Google search and read about this in several articles. My doctor was wrong... again! However, I found plenty of evidence that a low fat diet is suggested for lowering your risk of developing them:


Gall bladder diet

People suffering from gall bladder disease should follow a low fat-diet for healthy living. The bile from the gall bladder is necessary for proper digestion of fats. When there is no bile or not enough bile is produced by the gall bladder, fat from food cannot be properly digested and makes one feel ill or causes diarrhea. Hence a long-term dietary therapy is strongly recommended for people who have had gall bladder surgery. If your gall bladder is diseased, a low fat diet reduces stimulation of the organ and allows your gall bladder adequate rest. This eating plan also helps to prevent painful spasms of the bile duct.


On the other hand, gallstones are hard calcium or bile pigments that form due to the excess cholesterol in the bile. Though diet cannot shrink existing stones, it can help small ones excrete into the gut. Take up more starchy foods like bread, cereals and rice if you have gallstone problems. Also add more vegetables and fruits to your diet for fiber. Cut down refined foods and fatty red meat as this may lead to further complications.


Low fat diet and Gall Bladder

Cholesterol plays a major role in gall bladder illness. The bile of obese people is super-saturated with cholesterol, leading to the growth of gallstones and other gall diseases. Recommended diet for gall bladder disease:


Avoid fatty or fried foods and red meat. Substitute your salad dressings with vinegar and olive oil
Avoid large meals especially during bed time
Avoid carbonated drinks as they can trigger the movement of the stone causing more pain.
Do not go in for binge or purge diets. Slow, steady weight loss is the key to a healthy body.
Hope this helps.

I found the above article on Target/Women website (a website that deals with women"s health issues)

Rose: I think that you would probably feel better if you had your gallbladder removed. I can't believe that your doctor canceled your surgery. Can you get another opinion? I really hope that the patch is available soon.

Take care,

Mish xx

The key thing in my posting above is the word "suddenly".

*Suddenly* switching to a low fat diet actually can bring on gall stones.

Well I don't generally have a particularly fatty diet, and I have not eaten meat for well over 20 years, but my pain and loose bowels over several weeks was so severe that I had to cut the fat right down, as I noticed fat intake was making things worse. I was having some medicinal red wine most nights until I started on a drug for the accompanying pain for which alcohol is a no-no. I have eaten a high-fibre, complex carbs, high fruit and veg content vegetarian diet for many years.

Gallbladder problems are a common side effect but appear in fewer than one in 10 people using lanreotide, according to the patient leaflet. Also (and this may or may not be relevant) my mother had her gallbladder removed in her 50s, as did her sister, due to gallstones. There may be a family predisposition here.

So, the low fat diet only got lower, and my alcohol consumption stopped, only after the effects were showing up.

Steatorrhea is a sign that something is up with your ability to process fats. I thought this would go. It started off quite mild but got worse, even on a more normal diet. I still have this, but am trying to reintroduce fats into my diet.

Since coming off the lanreotide (my last dose was 8th March) it has got better but is still not "normal". I am taking Buscopan (an antispasmodic) and amitriptyline (tiny dose, 10mg at night) for pain and also for its effect on the gut.

I will be seeing the endocrinologist next week and hope to get a bit of guidance.

John

Mish, It is an implant, not a patch. It is surgically implanted in the upper arm. It is probably going to be available to the general public in about 2 years, when the clinical trials are over.

That doctor actually seems like an answer to my prayers. The local endo knows nothing about acro but this one, who is in charge of the clinical trial, is an expert. Chicago is closer than Rochester, Minnesota where Mayo is & it's w/in the US so my health insurance - even inferior ones like my school district is progressively choosing - should approve consultations with him once the clinical trial is over & I will have to pay to continue to see him. Toronto, would be a different question, even though I know there's an awesome doctor there! If I had pain or nausea I'm sure he would have had me go through with it & I don't think my PCP would have agreed to cancel either. I do have terrible fatigue and just do NOT feel well in general, so maybe it will end up acting out eventually & at that point we'll take it out. I am on sick leave, now & will have my tail bone removed the end of the month. As it is, that will be the 5th surgery since March 10th! BTW, my PCP had thought the tail bone issue was related to acro, but the neurosurgeon & the orthopedic surgeon say it is not related but that it looks like something related to an injury from a fall.

John, your diet sounds really healthy. Also, I've heard that there can be a familial tendency to have problems with the gall bladder. One of my colleagues has been troubled with hers this entire academic year. It causes her a great deal of pain. I sure hope you find some resolution soon.

Rose @--}-----

Hi Rose- I actually meant to write implant but wrote "patch" this is another problem I have had since my symptoms started... wrong word pops into my head, also, sometimes I can't think of the word period. This is so frustrating and embarrassing as well. Not to brag, but I have a university degree and sometimes I can't string a sentence together.

On another note... It sounds like that implant will be of great help to many people. I only had 3 sandostatin injections prior to my surgery, but I have 3 needle marks on my backside where the nurse injected me. They appear to be scars. I inject pegvisomant 2x a week which I don't mind at all.

You have been through so much in the last year, I hope you get some relief with your new doctor. It is so important to have a knowledgable doctor with a rare disease such as ours.

John- Good luck with your endo appointment next week!

Take care,

Michele

Thanks Michele,

If I get any useful guidance, either for continuing treatment now I am off lanreotide, or for the gallbladder thing, I will post up here.

John

John,

will you try with Pegvisomant, now?

Harmony

Harmony,

Whether I try pegvisomant is dependant on what the endocrinologists say. Now, despite the fact that I thought it was treated as a 'last resort' medication in the UK (and also because of its lifetime cost is not always funded by the every NHS Primary Care Trust), it was listed as a drug on the treatment plan I signed. However, despite this, it will still be subject to funding agreement by my PCT, and every PCT has formulated its own rules for approval of very expensive drugs. I do not know whether my PCT approves it or not.

So, short answer -- I don't know! Maybe I will know more by next week.

John

Good luck John!

I hope that you will get it. I'll keep my finger crossed for you.

Harmony

Jon...Just one of them thoughts ..Did you ask although you was in extreme pain could the drug be sort of helping to try and balance an underlying problem...J

John,

Good luck with it all. I did go on fibre supplements (the ones in the bright yellow boxes) in the early days of Sandostatin to regulate things a bit.

Suddenly coming off sandostatin can also bring on gall stones, I expect it is the same for Lanreotide. Unless it's too late, it might be an idea to taper-off by taking another lower dose before the effect of the last injection totally comes off.

With Pegvisomant, you should have a strong case for it. It might possibly be worth going onto a different dose/frequency regime with Lanreotide before giving up on it, perhaps in combination with Cabergoline which gives promising results in some.

Trys

I couldn't deal with the digestive side effects. As well as Buscopan and amitriptyline (both of which I am still on) I was on diazepam for a few weeks as the pain was that bad. For several days before starting on the diazepam I was in too much pain to sleep (couldn't get into any position, including sitting in an armchair, that would allow me to).

It's probably too late to taper off the lanreotide. My digestive system still isn't right, but I am now about two months since my last dose and it is feeling better than it was.

I'll see if the appointment this weeks leaves me any more enlightened as to my ongoing treatment.

John