The Colon Club

Rob, I really want it out! My oncologist took it before the tumor board after I begged him to get their opinion, and was met with a resounding NO. They feel that it is too small and nonthreatening, even if alive, to take even the small risk of liver injury. Given that Keytruda took care of the lymph nodes, they don't seem to think this could be threatening. Apparently at least one of them said it might not even be a met. (I doubt that, personally, but I do think it is likely necrotic tissue now.)

It is right on the surface, about the size of a pencil eraser, and it wouldn't even require a wedge. To be sure of the margins, I would guess they would take about a square centimeter. But no.

Two things:
1 The docs are presumably weighing risks (that is still a liver surgery, still invasive with some level of risk) versus the likely benefit.
2 Check with your oncodoc and/or other docs and strongly tell them about your knee symptoms if you haven't already. Good medical oncologists should be able to look at various options and/or refer to correct specialists. Make sure they are aware that this prevents exercise, and the top 2 to 4 other drawbacks it has for you getting better.

They need to balance knee versus cancer. I'm putting off a lot of minor stuff (teeth cleanings, getting a kidney stone zapped) because (A) they are less important, (B) they DO have possibility of screwing me up while under cancer treatment. I had an immune-suppressed friend get a teeth cleaning many years ago and she ended up getting a replacement heart valve because of it (she didn't know she was immune-suppressed until it was too late).

boxhill wrote:Rob, I really want it out! My oncologist took it before the tumor board after I begged him to get their opinion, and was met with a resounding NO. They feel that it is too small and nonthreatening, even if alive, to take even the small risk of liver injury. Given that Keytruda took care of the lymph nodes, they don't seem to think this could be threatening. Apparently at least one of them said it might not even be a met. (I doubt that, personally, but I do think it is likely necrotic tissue now.)

It is right on the surface, about the size of a pencil eraser, and it wouldn't even require a wedge. To be sure of the margins, I would guess they would take about a square centimeter. But no.

My neighbor is on Opdivo and his cancer which is no longer cancer, had a small growing cancer at the top. His doc use a freeze gun, he describe it as a laser gun but shoot out cold freeze to kill his cancer. This didn't require opening him up to access his liver.

Nate.

Hi Zod,

I can assure you that my onc knows all about my pain issues. He treated it initially with a combination of steroids and time off Keytruda, but then referred me to the orthopedic people.

Yes, I understand that the risk benefit calculation apparently argues against removing my little node, even though the risk of liver injury is small. I get somewhat frustrated when I read about so many resections, but again, I am lucky in that my liver thing is apparently so much less threatening.

My doctor said that the type of procedure where they zap it with heat is out because of the position. (Apparently you need surrounding tissue to be a "heat sink."

I'm happy to report that on Thursday I had a steroid injection into my knee and it WORKED!! I also had a battery-assisted steroid patch to my hand, and that improved things, although not as much. Luckily, one can apparently have them pretty frequently.

Well, the pain relief from the knee injection was short-lived. The pain came back big time after 4 or 5 days. Hand pain levels vary depending on whether I do anything with the hand, such as chopping up a couple onions. That will result in two days of elevated pain, as opposed to the regular baseline pain.

First, I was holding on for the injections. Since then I've been holding on for Celebrex, which my insurance rejected, as predicted, demanding additional info from the doctor justifying its use. Still waiting to get it.

I sincerely wish that every insurance company asshole who dreams up these rejection protocols have to suffer my pain and that of all of the others who are suffering because of them.

I also wish that they suffer the uncertainty and fear and disease progression and everything else suffered by those who are refused MRIs and other tests.

I have a scheduled infusion next week, and I doubt I'm getting it. I was barely able to convince them to let me have it last time. At this point I am disheartened, and I think I may have to go off Keytruda for a while, at least, because this constant pain is not supportable. Do I want to live like this? I've found myself wondering if it would really be such a big deal to be an opioid addict if the supply were assured. Wouldn't that be better?

It's ironic, because my status as a responder to immunotherapy puts me way out to the right hand side of the life expectancy curve of CRC patients.....if I can take it.

Well, the pain relief from the knee injection was short-lived. The pain came back big time after 4 or 5 days. Hand pain levels vary depending on whether I do anything with the hand, such as chopping up a couple onions. That will result in two days of elevated pain, as opposed to the regular baseline pain.

First, I was holding on for the injections. Since then I've been holding on for Celebrex, which my insurance rejected, as predicted, demanding additional info from the doctor justifying its use. Still waiting to get it.

I sincerely wish that every insurance company asshole who dreams up these rejection protocols have to suffer my pain and that of all of the others who are suffering because of them.

I also wish that they suffer the uncertainty and fear and disease progression and everything else suffered by those who are refused MRIs and other tests.

I have a scheduled infusion next week, and I doubt I'm getting it. I was barely able to convince them to let me have it last time. At this point I am disheartened, and I think I may have to go off Keytruda for a while, at least, because this constant pain is not supportable. Do I want to live like this? I've found myself wondering if it would really be such a big deal to be an opioid addict if the supply were assured. Wouldn't that be better?

It's ironic, because my status as a responder to immunotherapy puts me way out to the right hand side of the life expectancy curve of CRC patients.....if I can take it.

Have you try THC/CBD?

Nate.

No, I should.

This morning I miraculously woke up with only a little pain in my knee, which I was able to bend. Close to "normal." I was able to walk normally. My hand is still painful.

So today I had another infusion.

Still no Celebrex.

I asked my oncologist whether O+Y would be an alternative for me. He said that he doesn't like to use Yervoy, because the toxicities are very bad and he has patients who still suffer the side effects 2 years after taking it. So despite my issues with Keytruda, he would rather that I take a substantial Keytruda break and retry it than switch to O+Y.

For the benefit of anyone else who may suffer from this side-effect of Keytruda...

The pain escalated and spread into both knees so that getting in and out of a chair was very painful. While travelling I discovered that getting on and off a regular toilet was almost impossible. (We had completely coincidentally replaced both of the ones in our house during the preceding year and I chose "comfort height" for no other reason at the time than it sounded nice.) The pain in my right hand escalated until it was a burning mass on the end of my arm with periodic sharp shooting pains. Nothing really helped: tried gabapentin, tramadol, hydrocodone.

I started aquatherapy in a 92F pool in December, which was glorious, although it didn't help out of the pool.

Then---finally---CELEBREX approved. Started Dec 10th, 2 months to the day after it was prescribed. The very first pill eliminated the burning portion of the pain in my hand, although not all of it. It gradually improved everything. I'd say the pain has been cut about 50% overall. It is still there, and still limiting, but more manageable. Also started OT for my hand, and got a thumb/wrist brace that really helped the tendonitis in my thumb. Again, not gone, but better.

I skipped my planned infusion on 12/24, and noted that I started to regain energy and feel more normal. Maybe because of the lessening of the constant pain. Reluctantly returned to Keytruda last week. So far, no major pain explosion, except in my iffy ankle that I sprained in 2012.

So I'm not near pain-free, but cautiously optimistic that 2020 will be better than 2019.