Was on list but taken off cause cancer returned in right pv First in July 2019 4 cm. tumor first showed up in right of..Aug. was taken off list..Sept. started immunotherapy (Opdivo)..then in Oct. tumor grew to over 11 cm. Now in Jan. 2020 it lowered to 6.9 cm. ..hopefully due to the Opdivo? I get infusions every 2 weeks..but in Oct. missed 2 infusiomsg as I was admitted to hospital twice. Is there a possibility that I could be put back on LTL?? Gosh..I surely hope so.I know my doctors are impressed with my progress. My last hospitalization was due to C. Diff. Ughh..Now..doctors tell me I will be getting infusions once a month at double dose?? Hmm...Would love to hear from anyone that is familiar with what I am going thru??
.Thanks for all your patience with reading the above..lol....and onward we trod!! Much luck to everyone battling this disease!!
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Pjmr1019
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I have had portal vein issues and Opdivo. My response has been so good the MELD score went down. Been told no transplant for 3 reasons. Doing too good, portal vein and doctors do not want to transplant a patient who has been on immunotherapy due to graft rejection issues. Hope this helps.
Thank you Wayne...you are the first person who has similar cancer that has responded...I really appreciate that...how many times a month do you get infusion?
Thanks Wayne..again..My liver specialist said that my cancer is not "active" on last scan..but how can that be? CT says 6.9 cm. by 3.? cm. Hmm..she also said that I can never get transplant because. once it has moved to vein one is not eligible. After next infusion..Feb. 5th, when I believe they will start the double dose, I return every month for infusions..fun times ahead. What a letdown to be taken off the list. Hopefully Opdivo is the new wonder drug for me..lol..
Great to hear back from you. I don't know how the doctor can say it is inactive without biopsy. My doctors have told me that several times. I initially had Y90. Did you get that? Then, Opdivo. I started right after it was first approved. 1 hour session and 2 times a month. Switched to 30 minutes and still 2 times a month. I never had any severe side effects. Just muscle pain and fatigue. My tumor went from 11cm x 9cm to 5cm x 2cm. AFP 25,000 to 1.5 but the doctors still don't know if active. One of the reasons stopped Opdivo after 53 treatments was to see what the tumor does. Immunotherapy can eventually cause more side effects. I was offered TACE in the beginning but didn't because doctors were worried about more damage to portal vein. All have been very cautious about portal vein. There have been transplants with portal vein problems but data was not possible. It is certainly a doctor's call. The hope for me and as well as for you is that we can heal without a transplant. As you said LOL.
I had DEB Tace 3 times and the cancer went away..then had Microwave Ablation to remove residue near portal vein...thought we were done until CT in July which said 4 cm. in portal vein. .August 2019 was told I was taken off list. Just hope it keeps going down...guess it really hits you harder in the beginning..huh..just hope it all gets better going forward.....already have had my prostate removed from cancer a few years ago.
At diagnosis over 5 years ago I had cirrhosis and HCC (2 tumours) one very close to the portal vein. I had 2 sessions of TACE that shrunk the tumours. I was on the TACE2 trial and I had 3 years on daily doses of Sorafenib (chemotherapy)
I was told that I wouldn't be accepted for transplant because of the tumour being so close to the portal vein.
I suffered some damage to the portal vein when I had the TACE procedures and this resulted in portal vein thrombosis.
When I went into end stage liver disease from cirrhosis roughly 2 years ago I was actually then put forward for transplant assessment and told that I would only stand a 30% chance of getting a transplant because of my age (68 at the time) and because I had been type 2 diabetic for over 20 years.
Well I made the transplant list and I had my transplant 17 months ago and I'm doing very well and through good diet and losing weight I am also in remission for diabetes type 2.
So never give up hope. I lived with the label terminal for roughly 4 years.
I hope that your tumour continues to shrink and that eventually you get your transplant.
Wishing you all the very best with your treatment.
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