amk1122,
I think overall I lost about 10 lbs between the start of PRRT and the end. And I started gaining it back about 2 months after the end of treatment--and over those next months, I stabilized back to my original weight. I've never had carcinoid syndrome symptoms and I'm able to eat most things without too many issues except fatty or spicy foods. I do still get bloating and cramping at times and I have recently experimented with OTC digestive enzymes at my oncologists suggestion. I think it might be helping some of my issues and he suggested that there are prescription enzymes we could try if the OTC ones seem to help. You might ask about that. In my case, it's possible that my issues are related to the lanreotide injections rather than the NETs, i.e. a lack of sufficient enzymes for good digestion. At one of the recent Connect Support Group meetings, one of the oncologists made the statement that he is now routinely having all his NETs patients meet with one of the Mayo dietitians that has NETs expertise--you might want to ask about that as well. Wishing you good luck and hope things improve for you.
Hello,
I have a question regarding the wight loss after the PRRT treament. How much wight did you loose and how long the weight loss continued. I myself lost about 20 lbs by the end of 4th infusion. Since then, it has been 9 months and I have continued to loss with but at a much slower pace, but I am getting really worried about it as I thought it would stop and I will start to gain weight at some point. Pleast let me know how was your situation.
Thanks!
Hello @amk1122 and welcome to the NETs support group on Mayo Connect. I am sorry to hear of the weight loss you've experienced during the PRRT treatment. We have many members here who have had PRRT and perhaps someone else can provide you with their experiences with weight loss. Have you had a scan since you finished the PRRT?
I had scans couple of times. Although there was no shrinkage or tumor removal but at the very least there is no progression seen through the scans. But this weight loss issue has me worried. Initially it was swift and by the end of 4th cycle I had lost 20 lbs. Since then in last nine months I have lost another 5 lbs and started to look very thin and it's scary. Hopefully someone can describe their own ordeal as Dr. said he thought the weight loss should be over by now and doesnt have much to say. Feel very helpless and wooried.
I had scans couple of times. Although there was no shrinkage or tumor removal but at the very least there is no progression seen through the scans. But this weight loss issue has me worried. Initially it was swift and by the end of 4th cycle I had lost 20 lbs. Since then in last nine months I have lost another 5 lbs and started to look very thin and it's scary. Hopefully someone can describe their own ordeal as Dr. said he thought the weight loss should be over by now and doesnt have much to say. Feel very helpless and wooried.
Hello, amk1122.
I have just finished my 3rd round of PRRT. I've also lost weight (20lbs). It seems like a constant battle to maintain weight. I'm not sure if its the carcinoid, the PRRT or the octreotide. I got nervous when I went down to 140. So regardless of appetite I made myself eat everything, including alot of Ice Cream and In-n-out. After I gained some weight back, I started eating healthier and alot of protein food and drinks. I'm still 5lbs down, but it doesn't
seem like the insurmountable struggle it was.
Good Luck
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amk1122,
I think overall I lost about 10 lbs between the start of PRRT and the end. And I started gaining it back about 2 months after the end of treatment--and over those next months, I stabilized back to my original weight. I've never had carcinoid syndrome symptoms and I'm able to eat most things without too many issues except fatty or spicy foods. I do still get bloating and cramping at times and I have recently experimented with OTC digestive enzymes at my oncologists suggestion. I think it might be helping some of my issues and he suggested that there are prescription enzymes we could try if the OTC ones seem to help. You might ask about that. In my case, it's possible that my issues are related to the lanreotide injections rather than the NETs, i.e. a lack of sufficient enzymes for good digestion. At one of the recent Connect Support Group meetings, one of the oncologists made the statement that he is now routinely having all his NETs patients meet with one of the Mayo dietitians that has NETs expertise--you might want to ask about that as well. Wishing you good luck and hope things improve for you.
Hello @amk1122 and welcome to the NETs support group on Mayo Connect. I am sorry to hear of the weight loss you've experienced during the PRRT treatment. We have many members here who have had PRRT and perhaps someone else can provide you with their experiences with weight loss. Have you had a scan since you finished the PRRT?
What does your doctor say about your weight loss?
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2 ReactionsI had scans couple of times. Although there was no shrinkage or tumor removal but at the very least there is no progression seen through the scans. But this weight loss issue has me worried. Initially it was swift and by the end of 4th cycle I had lost 20 lbs. Since then in last nine months I have lost another 5 lbs and started to look very thin and it's scary. Hopefully someone can describe their own ordeal as Dr. said he thought the weight loss should be over by now and doesnt have much to say. Feel very helpless and wooried.
-
Like -
Helpful -
Hug
1 ReactionHello, amk1122.
I have just finished my 3rd round of PRRT. I've also lost weight (20lbs). It seems like a constant battle to maintain weight. I'm not sure if its the carcinoid, the PRRT or the octreotide. I got nervous when I went down to 140. So regardless of appetite I made myself eat everything, including alot of Ice Cream and In-n-out. After I gained some weight back, I started eating healthier and alot of protein food and drinks. I'm still 5lbs down, but it doesn't
seem like the insurmountable struggle it was.
Good Luck