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dlind48's Message Board Messages

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I hope your experience is different from mine. I was having some digestive issues and a CT showed a mass next to my mesenteric artery which sounded the alarm for carcinoid.  All of my subsequent scans were negative for carcinoid (including 2 octreoscans), and my labs came back normal or only slightly elevated. I had an exploratory laparotomy to remove the mass, but turned out to be benign. What was discovered was carcinoid in my small intestine (they removed a foot of it) with metastases to some lymph glands and my mesentery, peritoneum, and liver. I wasn't prepared for that. I have been getting the Sando shots for almost 2 years now, and my disease so far has been stable.  I have never heard of a benign carcinoid tumor, so I think that would be quite unusual; however, if they got it in time, it is possible that you are cured. Have you sought a second opinion?

I am not dealing with any new or significant stressors at this time, so I think that explanation is off the table. I did do some research, and while not a common occurence, hair loss is listed as a possible side effect. When I mentioned it to my local doctor, as well as to my doctor at the Mayo Clinic, they both agreed it could be an issue and decided to put me back on the 20 mg. dose to see it that helps. Thanks for your input!

Has anyone experienced hair loss while on Sandostatin LAR? I was at 20 mg. for about a year and a half and had some slight shedding. We upped me to 30 mg. in January due to an increase in my syndrome symptoms, and almost immediately, my hair loss significantly increased. I normally have a lot of thick hair, so even a moderate loss would not necessarily be noticeable, but now, i have only about half the amount of hair I had just last month. I'm thinking of cancelling my shot appointment for tomorrow and going back to the lower dose next month so maybe my tresses will recover somewhat. The higher dose did not improve my symptoms, and on the lower dose, I could get moderate control through diet restrictions and avoidance of alcohol.

Has an exploratory laparotomy been considered? That was the only way we discovered the extent of my disease, since nothing was showing up on my scans or lab work. Maybe they feel it would be overkill for you at this point.

I don't know if it's the shots or the indoent nature of the disease or maybe a combination of both, but over the past year, my disease has stayed essentially unchanged. I'd like to think it's the shots that are helping. I have developed one troubling symptom, which is a painful area in my right armpit. I just discovered this yesterday, so I'm hoping it is a plugged sweat gland or a cyst of some sort. I'll give it a week or 2 to resolve before I let myself get too concerned. Let me know how you do on the shots. They do hurt, but hopefully, whoever gives them to you is really good and has a technique that makes them less painful. I've discovered a gem of a nurse where I go, and I insist on getting her every time, even if I have a longer wait.

Best of luck to you, and I hope you keep posting with your progress.

OOPS...tumors showing NO measurable growth!

I just had my 6 month visit at Mayo in Scottsdale, as well as an oncology surgigal consult. My tumors are essentially unchanged, showing measurable growth on my scan. All my labs were good, except that my pancreastatin was slightly elevated. I had it done here in Tucson 3 months ago, and it was 85, but the results a couple of weeks ago at the Mayo Clinic were 125. The Tucson lab's normal range is up tp 135, however the range for the Mayo's test is only up to 88. I'm wondering if every lab has different evaluation protocols that would account for the difference in ranges. I'm not too concerned and will wait 3 months to see what level I'm at then. The surgical consult pretty much confirmed what I suspected - continue Sandostatin, 3 month blood work and 6 month scans -  until things start to go south, then revisit the surgical options, of which there are several. My surgeon from last summer very coldly told me, "There is nothing more I can do for you.", which has been weighing heavily on my mind for all this time. The Mayo doctors are questioning his findings as they feel my disease has not progressed as much as he indicated in his surgical notes, especially regarding the level of my liver involvement. It made me feel so much more hopeful to know that there is, in fact, much more that can be done when circumstances indicate a more aggressive approach, and that my doctors are proactive and optimistic about my outlook. Best of luck to you, and I hope you will continue to post your progress.

Laparoscopic surgery may not be possible. My exploratory surgery was a full laparotomy, when we discovered carcinoid in my small intestine, mesentery, and liver, none of which had shown up on any scans. It's major surgery with a considerably long recovery time to completely resume normal activities, although I was driving within a week to 10 days after being discharged from the hospital and traveled 200 miles to Phoenix to attend a Jason Mraz concert at 4 weeks post-op. Balancing activity with rest is the key to recovery. Obviously, the less invasive procedure would be the best, but it is not always possible. Just so you know. It did give me peace of mind to know exactly what I'm dealing with, even though no cure was possible.

I did have a PET scan (not with Gallium) that showed nothing. My blood work was coming in only marginally elevated until we ran the pancreastatin test. I was mistaken when I said my initial level was 177 - it was 207 in Oct. In Dec. it went down to 177, and my most recent test 3 weeks ago showed it is down to 85, which is in the normal range. This seems to indicate that the Sandostatin shots are doing their job and my disease has stabilized! If anything at all is showing up on your scans and/or blood work, I think your doctor should be investigating it more aggressively than it appears. Have you been on Sandostatin? My first oncologist said, "All your scans are negative. We don't worry unless your labs are up in the thousands, so we see no reason to treat you at this time. See you in 6 months." I said, "Bulls**t!" and promptly changed doctors. You have a lot going on and seem to have more than enough evidence to warrant changing doctors, or at least getting a second opinion. I hope you can resolve this and get the treatment you need and deserve.

I understand your frustration. My tumors only showed up when they did surgery for what we thought was a carcinoid next to my mesentery artery, but it turned out to be only a fatty tumor. I went in thinking they would remove the culprit and I would be good to go. Instead, I got the news that I have inoperable metastatic carcinoid. I never had the syndrome and none of my labs or scans were showing anything, in spite of metastases from my small intestine to my mesentery, perotineum, and liver. My oncologist here in Tucson was professional enough to admit that my case had him scratching his head, so sent me to the Mayo Clinic in Scottsdale, AZ, and for some reason, when they did an MRI, everything clearly showed up. They did the study with IV contrast only, and did not use any barium. I found their images to be far superior to any done in Tucson. They also ran a pancreastatin blood test on me, and it has turned out to be the only one that has shown a significant elevation, so that is the one we are using to track the effectiveness of the octreotide injections. The normal range is 88. My first test in October was 188 and the test in December was 177, so it looks like my levels may be going down. My only problem now is that I am due to be tested again in March, but the lab I have to use in Tucson apparently doesn't run this test. I am having my local doctor intervene for me to see if he can get some action so I don't have to go all the way back up to Scottsdale just to have a blood test. If my levels continue to go down, I will continue the Sandostatin shots. If not, then I will have to revisit whether getting the shots is of any value.

I alternate seeing my doctor at the Mayo Clinic, who is from Iceland and is a specialist in carcinoid, every 6 months with visits to my local doc for the monthly Sandostatin shots and and blood work. He told me that all carcinoids have receptors, but some are less apparent than others, so he wants me to stay on the Sandostatin until we have clear evidence that it is not working. Having negative scans is not a reason to be denied treatment. Keep being proactive and push for getting on the Sandostatin. Maybe a pancreastatin test would show something for you like it did for me. Keep an eye on your heart, too. I had a cardiac MRI in January that showed some involvement starting to develop in my tricuspid valve.

I'm sorry to hear you are so badly affected by this disease. When I went to Mayo in Scottsdale in October, they did blood work which included a test for pancreastatin, a test that I had never had done before. The upper limit of normal is 88, and mine came back at 207, which was the first time any lab work had shown anything significant. After getting 3 Sandostatin shots, I went for a return visit in December, and my pancreastatin levels had dropped to 188, so I guess I'm moving in the right direction.

Mayo's scanning techniques are far superior to anything I got in Tucson, and some very small lesions did show up in my liver with only an MRI. Their MRI technique was somewhat different from anything I had experienced before and seemed more targeted to my liver. I had surgery in August, when we found out my primary tumor is in my small intestine and is inoperable because it has spread to the mesentery and possibly to my perotineum, as well as to my liver. Although none of these had not shown up on any scans done here in Tucson, they were all highly visible on Mayo's scans, so now we can visually follow them along with the blood work results. I get my shots and pancreastatin levels done every 3 months here in Tucson and will go up to Mayo every 6 months for scans. There is also some concern for the tricuspid valve in my heart as it appears to be thickening, so I have to get a cardiac MRI every few months. It is a new development, so when I go back to Mayo in June, I will ask if they want to do the imaging for that, too, or if I should continue with my cardiologist here in Tucson.

I don't know where you are getting your treatment, but if you can manage to get someplace with some experience in carcinoid, go for it if you can. It could make all the difference. The oncologists in Tucson told me they couldn't do anything for me because of my marginal lab work and negative scans. I was actually told not to even start the Sandostatin shots. The doc I'm seeing at Mayo in Scottsdale is the first one in the entire state of Arizona to specialize in this disease (he comes from Iceland by way of University of Iowa), and I am so grateful he came onboard with them when he did. He has given me a light at the end of the tunnel. Financially, we just can't afford to go out of state, much less out of the country, but travel to Scottsdale is manageable. I just think it's astounding that the University of Arizona in Tucson has not addressed carcinoid in their cutting edge cancer research and treatment.

I hope you can stabilize your condition so you can start to feel better. Has any type of surgery been considered? It seems like there should be some better way to assess your condition. 

My best wishes to you and hopes for an improvement in your condidion.

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