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Radiation Oncologist
Spoke today, took the temperature under the bonnet, and he seems satisfied that he has failed to kill me. So, still having recieved a massive dose of Radioactivity for a week with a dose of Nivomulab two weeks before and a day after, the team seems to think that the abscopal effect is still on.
I'm trying not to get excited about it (it still seems a bit of a bit of a long shot) but if the abscopal effect works, its a cure and not just for me.
I guess I'll have a CT scan in a few weeks and then we'll know.
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Keeping Footstomper in my thoughts and prayers
i hope you are feeling better very soon. Pain, is a pain!
-Debbie
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Foot Stomper
Been following you here and reading your posts.
They took hubbie off Votrient on 09/05 because the diarrhea even with prescription meds was not manageable.
He starts tomorrow on infusion with Opdivo, keeping my fingers crossed. He will be infused every other week
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Dont get me wrong
I get pain from coughing, which is a side effect, brief but bloody painful. Easily dealt with, and I'm sure you've all dealt with more. I have a varying heaviness in my lungs but I'm told thats normal and really its no worse that how one feels when smoking heavily.
I'm not a tough cookie, but it is a chance at a cure. I'm really excited to be part of the research on the abscopal effect, which if it works, would be a real game changer in the treatment of cancer. This sounds not just a hope for my self, but a privilege to being hopefully involved in helping others
No results as yet. I have a slight discomfort in my lungs, but the hope is that when I get a scan in maybe a month there will be no cancer. I feel very good about this but try not to put too much weight on the result. It will just be another stage in my relationship with cancer.
So we'll see what happens.
Thanks for all your good thoughts and prayers.
PS: I'm not Scottish, I'm a bit Viking, a bit saxon, a bit French, a bit Irish, a bit jewish, a bit christian. In other words a Londoner.
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Good luck to you and your hubbienjkate07 said:Foot Stomper
Been following you here and reading your posts.
They took hubbie off Votrient on 09/05 because the diarrhea even with prescription meds was not manageable.
He starts tomorrow on infusion with Opdivo, keeping my fingers crossed. He will be infused every other week
I'm very well aware of debilitating diarrhea. I used to judge my days by how many pairs of trousers I got through, or even if I got enough time to get a pair on. I dont want to get anyone's hopes up but I have had pretty much no side effects in the 10 months I've been on Opdivo. This is wonderful, but as I'm sure you know, doesnt happen for everyone. So I hope Hubbie gets lucky! I also get an infusion evey two weeks which is really easy, it takes about an hour.
It worked really well as well, reducing all my mets in the first 3 months. I hope your hubbie has a similar experience. After 6 months I had one met growing in my lung which is why I'm undergoing experimental radiation therapy. Still not much in the way of side effects,I'm glad to say, but it'll be a few weeks before I get scans to see if it worked
So I wish you my first 3 months forever.
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just want to add...
this takes so much patience. I am really a big fan of the nivo. Sometimes it presents as failure but I believe it appears that way because of the way it inflames the tumors before they are destroyed. With it can come a fair amount of pain. Unfortunately since it is a life and death risk, we all get yanked off of nivo if there are questions of it being ineffective.
Again, when on trial, I was on 3x the normal dose of nivo for 18 months with zero side effects and 90% reduction of my tumors. This time nothing but multiple new tumors and a lot of pain everywhere. Every day I try to figure out why but I am stumped.
Anyway, I say that anyone with the chance to try nivo NEEDS to give it a try. And hang on as long as you can before necessity dictates another change. When you have mets, the realistic goal is to remain stable for a long healthy life. And for someone who is benefitting from nivo, and has minimal SE's at worst, try to find a way to make it work. This is how cancer becomes a chronic disease. Footsie, we share this goal together.
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Foxfoxhd said:just want to add...
this takes so much patience. I am really a big fan of the nivo. Sometimes it presents as failure but I believe it appears that way because of the way it inflames the tumors before they are destroyed. With it can come a fair amount of pain. Unfortunately since it is a life and death risk, we all get yanked off of nivo if there are questions of it being ineffective.
Again, when on trial, I was on 3x the normal dose of nivo for 18 months with zero side effects and 90% reduction of my tumors. This time nothing but multiple new tumors and a lot of pain everywhere. Every day I try to figure out why but I am stumped.
Anyway, I say that anyone with the chance to try nivo NEEDS to give it a try. And hang on as long as you can before necessity dictates another change. When you have mets, the realistic goal is to remain stable for a long healthy life. And for someone who is benefitting from nivo, and has minimal SE's at worst, try to find a way to make it work. This is how cancer becomes a chronic disease. Footsie, we share this goal together.
We all get stones in our pathway, and thing is with Nivo/Opdiva is its so new there are bound to be misteps, new problems and new possibilities, new treatments.
But as you say, minimal side effects. I think it will work. It or a development of Nivo. Cancer will become a chronic disease. Its a real privilege to be in at the beginning, to think that what I do with the abscopal effect may be of benefit to, who knows how many, who knows how much?
As you say, we share this goal. I dont know about you, and maybe its because I'm married to a research epidemiologist, but it really is bloody exciting. Almost gives the bloody disease a point. Almost...
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concerns of radiation?
Is there a fear of radiation? I just finished 5 more days of radiation to my right shoulder. In the last 3+ years, I've had radiation to my rt. shoulder, left shoulder, 3 or 4 different vertebrae, 3-5 ribs, left femur, base of skull to t-2 at least twice. What did I forget?
Anyway, despite my experience with several drugs, nephrectomy, chest biopsies and radiation, I am able to tell everyone that I am currently pain free for the first time in at least 3 years!! And radiation has been as important a treatment as anything. I cannot be concerned about the long term effects of radiation because I won't be here in twenty years anyway. Without my spinal radiation I would be completely paralyzed by now. The pain I've had would make me cry. Even on oxies. It's been a long haul and as short lived as my current reprieve is, it is a welcome victory. If any one is concerned about radiation exposure and is stage 3 or 4, I think your concern is misplaced. To me it is a sure thing. It has helped everytime.
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Agreedhardo718 said:So happy for you Fox
To read that you are pain free for the first time in 3+ years??......music to my ears!!
Hugs to you,
Donna~
Brilliant news Fox!
And I agree if you've got high grade cancer its a bit silly worrying about radiation!
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YAAAY FOXY-baby!!!!foxhd said:concerns of radiation?
Is there a fear of radiation? I just finished 5 more days of radiation to my right shoulder. In the last 3+ years, I've had radiation to my rt. shoulder, left shoulder, 3 or 4 different vertebrae, 3-5 ribs, left femur, base of skull to t-2 at least twice. What did I forget?
Anyway, despite my experience with several drugs, nephrectomy, chest biopsies and radiation, I am able to tell everyone that I am currently pain free for the first time in at least 3 years!! And radiation has been as important a treatment as anything. I cannot be concerned about the long term effects of radiation because I won't be here in twenty years anyway. Without my spinal radiation I would be completely paralyzed by now. The pain I've had would make me cry. Even on oxies. It's been a long haul and as short lived as my current reprieve is, it is a welcome victory. If any one is concerned about radiation exposure and is stage 3 or 4, I think your concern is misplaced. To me it is a sure thing. It has helped everytime.
YAAAY FOXY-baby!!!!
Free of pain, so well deserved, brings me to tears for you!
Hugs, Jan
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I dont think you've hijacked the threadfoxhd said:Sorry about
the hi jacked thread. Please, no one else comment here. I'll open a new thread.
We seem to have both had similar experiences and, it seems, a fairly similar outlook.
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