Question for chemo for lifers...

[BeansMama]

How do you do it? How do you make it through all these infusions?

I have infusion #22 on Tuesday and I just don't want to. I know I will, because I have to, I pray this demon of a cocktail they have me on shrinks this tumor so I can get to surgery. It makes me so sick, I get maybe 2 days of feeling ok before I have another treatment.

On the other hand I just want a damn break. I'm tired of feeling sick and tired if that makes any sense. I know I can't stop chemo, I still have an active tumor that grew on the last chemo cocktail. If I stopped my liver tumor would grow. Probably faster than normal CRC (normal CRC? does that even make sense?) since I am Lynch positive and from what I have read it makes it grow faster (hoping I read that incorrectly. Really really hoping)

Sorry about the whinefest. I just needed to get it out, I could have talked with my husband but he just doesn't understand. He would encourage me to push on (which I am going to do anyway) but he doesn't fully understand how I feel. I needed to vent it somewhere people understand what it is like to have received chemo and how it really makes you feel.

[KElizabeth]

You are on the most difficult Chemo cocktails there is Mama. It's okay to whine or feel sorry for yourself every once in awhile. You have come this far and are one tough cookie.
Have you talked to your oncologist about local treatment to the liver? Maybe therasphere, RFA or cryoablation? I forget if you have mentioned this before.

[Maddielolo]

since your lynch, have you investigated immunotherapy for MSI-high?

[BeansMama]

You are on the most difficult Chemo cocktails there is Mama. It's okay to whine or feel sorry for yourself every once in awhile. You have come this far and are one tough cookie.
Have you talked to your oncologist about local treatment to the liver? Maybe therasphere, RFA or cryoablation? I forget if you have mentioned this before.

We have discussed liver targeted radiation and chemo. Basically they inject little spheres containing either into my hepatic vein to hit the liver. Not sure of the technical name for it. The thing they are worried about is damaging the good portion of my liver. The goal is to preserve that as much as we can because we are still aiming for resection. From what I gather from my oncologist we will only do it once resection is off the table.

I'm just so tired of not knowing. I read all these posts where everything has gone so easily and I wonder why hasn't mine been like that? I know every path is different when fighting this disease but why did mine have to be Mount Everest???

[BeansMama]

since your lynch, have you investigated immunotherapy for MSI-high?

I have approval from my insurance for Opdivo. My oncologist wants to see if this chemo cocktail fails first. According to my oncologist the Opdivo will most likely only keep me stable. I will still have side effects, but they won't be as bad.

[Maia]

[chemo] I am Lynch positive and from what I have read it makes it grow faster

Yes.

I have approval from my insurance for Opdivo.

SO happy to hear, so glad!

[BeansMama]

[chemo] I am Lynch positive and from what I have read it makes it grow faster

Yes.

I have approval from my insurance for Opdivo.

SO happy to hear, so glad!

Thanks Maia

[Maia]

BeansMama, the following is some information that you might want to share with your oncologist for his/her consideration --or not, but I have to say it! : )

The following is about a drug similar to Opdivo (an anti PD-1/L1) *but* that is has a little wider action --so much, that some MSS colon cancer patients go for it. So, being Lynch / MSI-Low, you would be even in a better position that those MSS.
The nearest location for you would be on Huntersville, at the Carolina BioOncology Institute, with Dr John D. Powderly (one of the best since years ago for immunotherapy for CRC). Maybe it's not near you, despite being in the same state, BUT... this is the first ORAL immunotherapy in trials. It's a pill. So no infusions; not other hospital visits than for tests / follow ups.
This is the trial: https://clinicaltrials.gov/ct2/show/NCT02812875
I was going to post for all on the board, so I'll make a separate post with more data.

edited to add: http://carolinabiooncology.org/ http://carolinabiooncology.org/dr-powderly/

[BeansMama]

BeansMama, the following is some information that you might want to share with your oncologist for his/her consideration --or not, but I have to say it! : )

The following is about a drug similar to Opdivo (an anti PD-1/L1) *but* that is has a little wider action --so much, that some MSS colon cancer patients go for it. So, being Lynch / MSI-Low, you would be even in a better position that those MSS.
The nearest location for you would be on Huntersville, at the Carolina BioOncology Institute, with Dr John D. Powderly (one of the best since years ago for immunotherapy for CRC). Maybe it's not near you, despite being in the same state, BUT... this is the first ORAL immunotherapy in trials. It's a pill. So no infusions; not other hospital visits than for tests / follow ups.
This is the trial: https://clinicaltrials.gov/ct2/show/NCT02812875
I was going to post for all on the board, so I'll make a separate post with more data.

Thank you Maia! I will bring this up with my oncologist. Huntersville is actually pretty close to where I am as it is another suburb of Charlotte. No infusions sounds wonderful!

[Maia]

There, I posted in a separate thread for you and everyone else:

viewtopic.php?f=1&t=56821
and I posted the links to Carolina BioOncology Institute and Dr Powderly in the previous post.

BeansMama, I hear your pain with chemo each time that I read your post, since months ago. Maybe this trial (or taking Opdivo) might get you to liver resection! And if it's not, maybe it give you a rest, just keeping you stable --which is not bad, since your immune system is taking a toll, and you need a good immune system to keep the NED forever after a resection! If Opdivo or a trial don't work well, chemo will be there for you to revisit.
I so wish you a lot of good things in this 2017!

[jhocno197]

I'm just so tired of not knowing. I read all these posts where everything has gone so easily and I wonder why hasn't mine been like that? I know every path is different when fighting this disease but why did mine have to be Mount Everest???

I feel the same way about my husband's.

[Steph20021]

Beans mama I'm a chemo for lifer too and I just had another infusion on Friday so as today is Monday I'm only starting to get over it now. I have the same feelings. I want to stop but I know I can't, I know I won't. I'll keep pushing on because I want to live but this is a hell of a way of going about it. I was so sick this time. I think because my dose was lowered the last time due to low WBC that it made this one feel even worse than usual. I'm sick of the rollarcoaster too and I wanted to share in that with you. We are in this crap together. All I keep hoping for is that a cure or nicer alternative will come sooner so we can get off this stuff in the near future. <3

[KElizabeth]

We have discussed liver targeted radiation and chemo. Basically they inject little spheres containing either into my hepatic vein to hit the liver. Not sure of the technical name for it. The thing they are worried about is damaging the good portion of my liver. The goal is to preserve that as much as we can because we are still aiming for resection. From what I gather from my oncologist we will only do it once resection is off the table.

I'm just so tired of not knowing. I read all these posts where everything has gone so easily and I wonder why hasn't mine been like that? I know every path is different when fighting this disease but why did mine have to be Mount Everest???

Would it be difficult to schedule a consultation with an investigational radiologist on your own then pitch the ideas to the oncologist after you know the option? Do you live near any large metropolitan areas where there is likely to be a couple doctors like this?
If you can't schedule a consultation yourself maybe the oncologist could be persuaded to recommended you to one. My doctor told me he could do RFA or cryoablation several times and still not rule out other procedures in the future such as resection or Therasphere.
It doesn't hurt to ask anyway.

[Lee]

I don't really have any advice. You have been given some good advice. Getting other opinions may not be a bad idea.

When do you get scanned next? Am I correct to assume that is when they will consider you a candidate for surgery (ie there is tumor shrinkage).

Thinking of you,(((BeansMama)))

Lee

[jortego128]

We have discussed liver targeted radiation and chemo. Basically they inject little spheres containing either into my hepatic vein to hit the liver. Not sure of the technical name for it. The thing they are worried about is damaging the good portion of my liver. The goal is to preserve that as much as we can because we are still aiming for resection. From what I gather from my oncologist we will only do it once resection is off the table.

I'm just so tired of not knowing. I read all these posts where everything has gone so easily and I wonder why hasn't mine been like that? I know every path is different when fighting this disease but why did mine have to be Mount Everest???

The technical term for it is call SIRT - Selective Internal Radiation Therapy. It uses the radioactive isotope ytrium-90, infused into microscopic glass or resin spheres. The spheres are mixed into a solution and injected into the femoral artery after pinching off certain arteries to direct the spheres into certain portions of the liver, where they become lodged into the capillary structures of the tumors. They release cell killing radiation for a few days before decaying into non-lethal levels.

There are two brands of SIRT - Therasphere (glass) and SIR-Spheres (resin). Both have been shown to be equally effective. I was going to have this for my mom, but she was too weak and we made the choice to call it off, it was a good call as she died a couple weeks later. Had I known about the procedure at the beginning, I would have pushed for it at the start.

SIRT is no magic bullet, but statistically it can increase chances of resection over systemic chemo. I forget the exact numbers, but if systemic chemo is 5%, SIRT maybe 15 to 20% or so.