Failed both Votrient and Opdivo
I am hesitant to post this, because, once I do, it becomes real. Had my three month scan after starting on Opdivo and my cancer has progressed signifcantly - to my liver, to my back deltoid muscles, to the soft tissue in my left flank, extensively in the chest lymph nodes and there is some shadowing in the left temperal lob of my brain. A brain MRI next Tuesday will tell us how significant the spread is to my brain.
Unfortunately, my oncologist has stated my cancer is resistant to treatment.
I will be taking the next 3 months away from work to determine what my options are at this point.
Prayers are appreciated. Thank you for being here my friends.
Comments
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Thinking of You
Sounds awful! Have you tried a second opinion? There are even newer drugs/treatments coming on line, perhaps you could get on a trial?
I'm sure you have thought of all these things.
Good luck. Be sure we are all thinking of you
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I am sorry to hear of your
I am sorry to hear of your struggle and I will pray for you. I hope you find a new treatement that works.
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RCC specialist?
Are you seeing an RCC specialist? I would think he would urgently start you on another treatment. There are 7 other drugs in the arsenal. Most people do not respond to Opdivo. Many people will respond to one TKI and not another or MTOR inhibitors instead. I know you are very discouraged, but I would be pushing to get started on something else quickly. In the meantime, I will be praying for you.
Kathy
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Opdivo Failing
Hi Debbie. I'm so sorry to hear this news. I went to look at your bio, and there's very little recent information there so it's hard for me to make any useful comments. I don't know when they found your mets or what other drugs you might have tried.
In any case, prayers for you. This I can do. I'm guessing your docs are doing their best.
Wishing you well,
Todd
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Thank you everyone
My current oncologist is recommending Cabozantinib as my next treatment. I will be seeing my oncologist tomorrow to discuss all options, including a referral to UCSF to inquire on clinical trails. However, my concern is that if I start Cabo, will I disqualify myself for clinical trials that may help. We will have to make a decision tomorrow on course of action as my cancer appears to be very aggressive at this point.
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Next step
Going to UCSF is a great idea as long as you can get in pretty quickly. I think it can take some time to get accepted int a trial so you want to get the process started ASAP since your disease has become aggressive. Some trials do exclude people based on prior treatments. Also, some trials won't accept people with active brain metastasis.
I hope that you can see an RCC expert to be sure the right decisions are being made for you. I know that Nivo and Cabo are the most recently approved drugs, but that doesn't necessarily mean that they are the best choice for every patient.
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Loss for words
I am praying that you find an effective treatment, know that you are in my prayers.
Sincerely,
Bell
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BellaBinksMom said:
Thank you everyone
My current oncologist is recommending Cabozantinib as my next treatment. I will be seeing my oncologist tomorrow to discuss all options, including a referral to UCSF to inquire on clinical trails. However, my concern is that if I start Cabo, will I disqualify myself for clinical trials that may help. We will have to make a decision tomorrow on course of action as my cancer appears to be very aggressive at this point.
If you can reach the oncologist's nurse at UCSF, I would expect you can get in quickly. They'll need all your medical records and scans. You can usually hand carry those things and get them within a day or two if you are willing to go pick them up. I've done this a couple of times now.
In my experience an RCC specialist oncologist is absolutely worth it. They really keep up on this disease. Dr. Figlin in Cedars/Los Angeles told me that he sees in a day the same number of patients with RCC as a normal oncologist does in a year or two. The field is fast changing and very specialized.
Regards,
Todd
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Votrient
Am I remembering incorrectly ? I thought you were doing well on votrient and the onc switched you to optivo. I seem to recall your asking here about that.
af any rate, I think you will get excellent care at ucsf; my husband has been treated there for last 3 years and the docs are great.
Sarah
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Well, my dear, I am sorry for
Well, my dear, I am sorry for what you are going through. Shock, confusion, disappointment, whatever. No one wants to learn their medication is not helping. However, your post made me think of Fox and how he was told he wasn't going to make it, that certain drugs didn't work etc etc. AND he's still with us, doing much better! Write to him, via direct message.
I hope you get some answers and a new treatment plan. Still.. I know this news is raw right now.
Sending you healing hugs!
jan.
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psuedo progression
After beginning nivo this spring, my first scans showed enlargement of my mets and multiple new ones. I was encouraged to switch to cabo. But I stayed on nivo and now feel as good as I have in a couple years. I know I have to wait until my next scans but how could I not be improving? I'm walking 18 holes a couple times a week. Easily. Gaining weight. Getting stronger. I believe the first scans showed a "tumor flare" or "psuedo progression" due to inflammation. I may be proven wrong but I am glad that I didn't give up on the nivo too soon.
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Fox - that is of interest
How much spread did you encounter?
I went from one mediastinal lymph node with low SUV update and 2 small nodes on my lungs to all of my mediastinal lymph nodes, both left and right hylar nodes, a spot in my liver, 2 tumors on my deltoid muscles, a cluster of tumors in the soft tissue of my left flank, and a "probable" met in the brain - had a brain scan last night to verify and determine how wide spread. All of this growth within 3 months while on Opdivo.
Please keep me informed as to how it goes for you while continuing the Opdivo. I am almost scared to give it another 3 months with so much spread right now
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Bella,
my changes would be about the same plus more. I belive many people have switched from nivo due to this "apparent" rapid growth. It is easy to be told we "Failed" nivo and to be encouraged to try what is next. In my case it's been 5 years, I don't want to be on another tki, and I'll take more chances. Most importantly, I am feeling as good as I have in a couple years. I'm looking at my longevity and I'd rather live feeling good than to live a few months longer feeling crappy. It's an easy decision for me. But it is scarey.
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Completely understand your mindset.foxhd said:Bella,
my changes would be about the same plus more. I belive many people have switched from nivo due to this "apparent" rapid growth. It is easy to be told we "Failed" nivo and to be encouraged to try what is next. In my case it's been 5 years, I don't want to be on another tki, and I'll take more chances. Most importantly, I am feeling as good as I have in a couple years. I'm looking at my longevity and I'd rather live feeling good than to live a few months longer feeling crappy. It's an easy decision for me. But it is scarey.
I told my husband the same think - quality of life is more important than quantity. If I can get into a trial, I would like to continue the Opdivo along with another drug.
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We did get a bit of good news - if there is such a think
My brain scan shows there is only one 1.5 CM mets to the left temperal lobe of the brain. There is edema swelling for which I am on steroids until we get in to have steriotactic radiation in the next week. So, the spread is not as extensiv as first envisioned.
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