I was in for a healthy heart check and the ultrasound showed liver spots. Didn’t really have any symptoms I was aware of but in retrospect I believe I had occasional flushing.
The week following my shots I get a sever(for me) headache that comes and goes. Very tired, soft stools and that’s about it. As the weeks move on to the next shot I’m still tired but less so.
I am glad that you shared your experiences with PRRT with @kreamks1. It is helpful to learn from the experiences of others when you are dealing with a new treatment.
@kreamks1
Do you have any specific questions you would like to ask these members?
All my carcinoid syndrome symptoms seem to be worsening. Were you ever told if the PRRT was actually being effective during treatment. I'm being told there is not way to tell until a PET Scan after completion of treatment.
All my carcinoid syndrome symptoms seem to be worsening. Were you ever told if the PRRT was actually being effective during treatment. I'm being told there is not way to tell until a PET Scan after completion of treatment.
I did not have my first scan until 3 months after my last infusion. The nuclear material continues to work in the cancer cells for some time after your last infusion, so I think they time the scan to see optimum results. I did have blood work done every other month throughout the treatment where they monitored blood count carefully. You might also want to take a look at net.org (Neuroendocrine Tumor Research Foundation) where there are several videos posted on various NET issues. I just attended a video event with them this morning that had an excellent speaker on PRRT--not sure when it will be posted, but I know they do plan on posting it.
I did not have my first scan until 3 months after my last infusion. The nuclear material continues to work in the cancer cells for some time after your last infusion, so I think they time the scan to see optimum results. I did have blood work done every other month throughout the treatment where they monitored blood count carefully. You might also want to take a look at net.org (Neuroendocrine Tumor Research Foundation) where there are several videos posted on various NET issues. I just attended a video event with them this morning that had an excellent speaker on PRRT--not sure when it will be posted, but I know they do plan on posting it.
My dear friend has had the 4 PRRT. She was ready to quit after 3 because of her side effects. Brain fog, severe fatigue, achy joints, hair loss. She persevered and her chromagroninA went from 22,000 to 9,000. She has her Scans next month and we hope her scans show what the CgA does—That was over time as it continues to work after treatments stop. She has Mets to liver, origin in small intestines
My dear friend has had the 4 PRRT. She was ready to quit after 3 because of her side effects. Brain fog, severe fatigue, achy joints, hair loss. She persevered and her chromagroninA went from 22,000 to 9,000. She has her Scans next month and we hope her scans show what the CgA does—That was over time as it continues to work after treatments stop. She has Mets to liver, origin in small intestines
I appreciate you sharing that good report of your friend's decrease in the CgA levels. I hope, as you do, that her scans next month also show an improvement.
Hello @kreamks1 and welcome to Connect. I see that you are wondering about the benefits of continuing with PRRT therapy. We have several members in our NET discussion group who have participated in this treatment with good results. I'd like to invite one of them to chat with you, @kjstein.
I would encourage you also to attend the NETs support group meeting on the first Thursday of each month at 5:30 EST. It is a virtual meeting via Zoom and it is a good place to meet with others and ask questions about their experiences with treatments for NETs.
Could you share a bit more about your journey with NETs? For example, how long ago were you diagnosed, and what other treatments (surgery, meds, etc.) have you had?
You mention that you "feel worse." Could you explain how you feel?
I had both fatigue and weight loss. No diarrhea either before or after PRRT, but some nausea with both of the first 2 treatments--there were some foods that I just could not eat. I also had hair loss (not completely, but got very thin). I also had some night sweats immediately after treatment. Since conclusion of the treatment, I've had some vision issues and an A-Fib episode, but not sure if either is related to the PRRT treatment, still truing to figure that out. I hope you can hang in with your treatments and hope your issues get better as treatment progresses. Sending you best wishes.
Karen
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!
Connect
Connect
Like
Helpful
Hug
I was in for a healthy heart check and the ultrasound showed liver spots. Didn’t really have any symptoms I was aware of but in retrospect I believe I had occasional flushing.
The week following my shots I get a sever(for me) headache that comes and goes. Very tired, soft stools and that’s about it. As the weeks move on to the next shot I’m still tired but less so.
-
Like -
Helpful -
Hug
1 ReactionHello @pjsheridan2022 and @kjstein.
I am glad that you shared your experiences with PRRT with @kreamks1. It is helpful to learn from the experiences of others when you are dealing with a new treatment.
@kreamks1
Do you have any specific questions you would like to ask these members?
All my carcinoid syndrome symptoms seem to be worsening. Were you ever told if the PRRT was actually being effective during treatment. I'm being told there is not way to tell until a PET Scan after completion of treatment.
I did not have my first scan until 3 months after my last infusion. The nuclear material continues to work in the cancer cells for some time after your last infusion, so I think they time the scan to see optimum results. I did have blood work done every other month throughout the treatment where they monitored blood count carefully. You might also want to take a look at net.org (Neuroendocrine Tumor Research Foundation) where there are several videos posted on various NET issues. I just attended a video event with them this morning that had an excellent speaker on PRRT--not sure when it will be posted, but I know they do plan on posting it.
-
Like -
Helpful -
Hug
1 Reactionsorry--that should be netrf.org
My dear friend has had the 4 PRRT. She was ready to quit after 3 because of her side effects. Brain fog, severe fatigue, achy joints, hair loss. She persevered and her chromagroninA went from 22,000 to 9,000. She has her Scans next month and we hope her scans show what the CgA does—That was over time as it continues to work after treatments stop. She has Mets to liver, origin in small intestines
-
Like -
Helpful -
Hug
1 ReactionHello @immmm
I appreciate you sharing that good report of your friend's decrease in the CgA levels. I hope, as you do, that her scans next month also show an improvement.
Would you encourage your friend to join our NETs support group meeting (via Zoom) on Thursday, August 4? Here is a link to the meeting information. https://connect.mayoclinic.org/discussion/zoom-support-group-august-4th/.
Hello, in diet what should I consider having radiation treatment and rheumatoid arthritis. What I read the diets seem to conflict.
-
Like -
Helpful -
Hug
1 ReactionHello again, @kreamks1,
You ask a good question. Are you wondering about the effects of radiation on cancer therapy for someone with RA? If so, here is an article from the Cancer Network website titled, Management Considerations for Cancer Patients with Rheumatoid Arthritis.
https://www.cancernetwork.com/view/management-considerations-cancer-patients-rheumatoid-arthritis.
I would also encourage you to post this question in one of Connect's discussion groups for members with RA. Here is a link to one of those discussion groups,
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/.
I'm sure there are others who have RA who have also had cancer treatments and someone in that group may be able to offer some suggestions.
In what specific areas do the diets conflict?
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!