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How Long Before Opdivo Starts Working

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How Long Before Opdivo Starts Working

Posted By
THMoore
6/20/2020 3:57pm
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Replies: 13

I had a reoccurrence in my neck just two weeks post radiation and surgery. I have 5 extremely small active nodes that can’t be felt and 1 node that is pea size. I just received my second monthly infusion of Opdivo. So it’s been once month exactly since starting. I have no side effects except a little tired. I keep feeling my neck to see if the node is getting smaller. I was wondering how long it took any of you on Opdivo or Keytruda started to notice a difference? I asked to be put on TVEC or the combo IPI but MDA said to stat the course. Getting very anxious. Thanks everyone

Trent

I think you are asking a million $$$ question. One sees side effects about four weeks in but that does not mean that you see immediate results in tumors. From what I see recent posts, 18 months to become NED. One can really not tell until you have a CT scan which they do every 3 months. My melanoma specialist tild me of a patient who saw reduction 9 months in. For me, I have resumed Opdivo only (after combo) and am on infusions for 13 months and there is just slight (1-4 mm)shrinkage in some tumors and none in the others. I have started with 6.7 cm liver tumor and 3 cm lung tumor among others. The largest shrinkage I saw with just 2 initial combo infusions and at 2 months it was 50% and at 4 months another 33% ever since then it the shrinkage has been miniscule and painfully slow over the last 13 months. Yesterday's CT scan puts the liver at 1.5×1.2 cm and lung at 0.6 cm. As long as there is no growth and no spread they feel immunotherapy is working. I know this is not really what we want to hear but unfortunately it is the reality of the situation melanoma patients face and are in.

While going through some of your recent posts, I saw you stated your unique BRAF status. I came across this study which you may find interesting. At least if anything, it gives you possibly another avenue to combat the melanoma in case you are not successful with this avenue.

https://ehoonline.biomedcentral.com/articles/10.1186/s40164-017-0067-4
Metastatic BRAF K601E-mutated melanoma reaches complete response to MEK inhibitor trametinib administered for over 36 months

In the meantime, stay patient, have faith in your specialist as well as the current treatment and above all else remain positive. Patience is a virtue.
Best wishes,
Melanie

Dear Trent,

Sorry you are going through this but I think you should stay the course and not rush things. On the plus side your tumours are very small and if you have BRAF then you have more options later. Also remember that often enlargement can mean the tumour is inflamed and responding. This happened to me with one smalll tumour, I was freaking out but actually it was benig destroyed. You also have tvec and surgery as options i think, just wait for a couple of rounds of scans, I know this is not easy but my advice is to take it slow and you have many good options too to play with. Plus you have great doctors most likely since you are at MDA.

Mel, am glad your scan result was reasonably good, on the board in the old days one of the slogans was stable is a victory, and i think its true. Also please dont underplay the reductions you have seen - they are quite drmatic so about one quarter smaller length wise but in area or volume terms much smaller, like maybe its now 1/64 of the volumethat your liver tumour used to be! (Depends on all the dimensions and they dont always tell you). Is there any chance that this is not tumour but just dead stuff or have they biopsied you? Can you try tvec too or can it not be injected? I hope they soon shrink!

I didnt check my results i will receive them wednesday and dont want to look online before my appointment. Today i fell off my bike though in heavy rain and have too many scratches and bruises - no emergency room but my chest feels sore.

Good luck to both of you
Mark

Thank you Mark. All of you are such kind souls and great fighters. I really need the support. It is greatly appreciated

Trent

Mark, I understand and I am happy about the huge decrease however I am disappointed that the lung ones are not all gone. We were planning to do a liver biopsy to find out about the status of the liver ones. They cannot tell if the large liver one split into two small ones. Also, since the liver one continues to shrink ever so slightly, we think it is still active melanoma. My oncologist suggested a PET scan if I plan to cease treatment. She also believes that all tumors must be completely gone and be undetected by a CT scan so I am not quite sure what to make of my slow shrinkage? What happens if they remain small but present? There are just too many (3 lung and 4 liver). How long do I continue on Opdivo? We have decided to continue treatment for another 4 months and see what happens.
Thank you for your kind words of encouragement. They definitely mean a lot to me.
Melanie

Hi Mel,
I am kind of wiped out now, but you do seem to have a complex case, like many of us, not black or white. I think your treatment has gone well and your Doctor seems good, but you might want to seek second opinions for other options or just staying the course. Were you thinking of discontinuing (I dont think I would stop) or starting something else?
Its great news that you had a huge response, just annoying that it does not seem to quite finish off, and what does this mean. I think Celeste and Ed might have better judgment. But I think continuing four more months and reassessing makes sense.
I am not an expert but two ideas. First, any chance you can add TVEC? Is anything injectable? This might give the immunotherapy the kick it needs (did for me - it actually reversed slow progression into slow reductions). Second, you might get lucky, just as you were lucky in being able to go back on treatment despite liver issues. My tumour stuck at about 1.3cm for two readings in a row, i had to go off treatment, then next scan they couldnt see it. So if you stay on treatment a miracle might happen.
The bike shop took pity on me yesterday and fixed my bike - it took them just a few minutes but there was a massive backlog of repairs and they had no new bikes for sale. Am scared to go out and ride, but thats my plan for tomorrow. And on Wednesday my doctor told me my scan results were good, I am so happy / relieved. The bad news is that I volunteer teach (started when first diagnosed) and my student's father passed away Wednesday from COVID-19. This is hard to take.
Mel, you have done well and, although it's a nightmare, I hope for further improvements in the coming months too
best wishes Mark

Congratulations on your scans! Certainly that must be a tremendous relief. I am also extremely glad you got your bike repaired and that you are on the mend. So sorry for the loss of your student's father. Things have certainly been highly unusual and unexpected on so many fronts this year that nothing surprises me any more. Hoping that this pandemic is soon over and that we can all concentrate on a long recovery.
As for my treatment, I will wait the four months and think about the possibilities and options. Like you, I do believe in miracles. Thank you!
Wishing you a speedy recovery and safe biking.
Melanie

Mark, I forgot to say that I am really sorry you had the bike mishap and I wish you a speedy recovery bruises and all.
Also, I hope you have great results following your scan. Please keep us posted.
Melanie

Thank you Miss Mel. I appreciate you taking the time to listen and talk.

Mel, what do they scan you with every 3 months? Do you get a PET every time, MRI f the body and brain or CT. Just wondering

Mel,
What type of scans do you get every 3 months? PET, CT, MRI of the brain? I was just wondering. I have been getting a PET, and MRI of the brain.

I had to go off therapy after my 2 nd infusion due to high liver enzymes. I had my CT scan exactly 2 months after starting immunotherapy and then after another 2 months again. Then every three months until this Feb. when I had decided that it was too much and we agreed on a four month CT scan schedule. I always get a chest CT scan and an abdomen and pelvis CT scan. I have had MRI's before I was diagnosed and before I started immunotherapy since they wanted to make sure I have not had brain nor bone metastases. I have never had a PET scan. It is my understanding that they repeat a brain MRI in one year after starting treatment just to make sure there is no tumor spread.
CT is superior for tumor measurements. MRI is best for detecting brain and bone tissue tumors. PET scan is superior for measuring cell activity within a tumor so it can detect dead or dying tumors.
Hope this helps.
Melanie

Three months is the usual time to response for any immunotherapy. There are those who respond sooner and outliers who can still respond after 6-10 months of therapy. Melanoma experts have preached to local oncs, radiologists and patients for years, when it comes to response and immunotherapy: "Be patient with the patient!"

Here's a cool graph that demonstrates the data: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-t...

I wish you my best. celeste

Thank Always Miss Bubbles. I do appreciate all your support and information during this time.

Trent