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Rejection

Butt's picture
Butt
Posts: 323
Joined: May 2018

i have multiple mets on my lungs. Just got back from MD Anderson trip 3. Slow progression on chemo. Chemo for life. A German clinic that does surgery for multiple mets rejectex me about 4 months ago. Today I received an e mail from a Russian clinic that does something similar. They rejected me , too. I am devastated without a promising plan !!!!!!!!!!!!

Kazenmax's picture
Kazenmax
Posts: 357
Joined: Feb 2016

I’m so sorry to hear this. So what does “chemo for life” mean? that there’s no remission or does it mean that the cancer can be controlled? Is there a possibility that the chemo could shrink everything? Is here a possibility that they will shrink and eventually be removed?

how are you feeling in general? I dont want these questions to disturb you. I just don’t know And I wish there as something I could say to help you. 

K

Annabelle41415's picture
Annabelle41415
Posts: 6242
Joined: Feb 2009

I'm sorry to hear that.  I'm not able to give you any advice on how to proceed in this but wanted to let you know that you are in my thoughts and prayers.

Kim

Canadian Sandy's picture
Canadian Sandy
Posts: 519
Joined: Jul 2016

Sorry butt.

abrub's picture
abrub
Posts: 2098
Joined: Mar 2010

Dr. Reidy at MSK, whom I mentioned in reply to your request for MSK doctors, is hoping that my chemo will shrink my lung mets enough for them to be ablated, and then remove my abdominal tumors.  There is also more immunotherapy coming in which may be useful for us in the next couple of years.

Alice

NewHere's picture
NewHere
Posts: 1110
Joined: Feb 2015

I am in a similar situation.  My cancer spread to my lymph nodes, spine and lungs.  The initial spread to the lungs was probably there from the beginning (2015), but 201t6 confirmed it and part of my lung removed late that year.  Late 2017 was the big spread, but things were small enough to try a trial. By Fall 2018 everything was growing, they do not even count the number of tumors my lungs.  Probably 70 at least - most smaller 1-2 cM, a few in the 3-4 cM range.  

So I have been back on chemo (FOLFORI) since October of last year.  Add Avistin to the mix earlier this year.  Just had my 19 treatment since October and the plan is for me to be on it as long as it works (maintaining/slowing/maybe reducing some) before moving onto the next thing. The last scan a couple of weeks ago showeda couple of tumors may have stopped responding.  Every visit I am asking about trials or treatments.  Things like ablation and surgery is off the table, just too much in there to try to play whack-a-mole.  It is not easy going through this.  I am doing things to try to remain as healthy as I can, including exercising a lot.  On chemo weeks it is harder. And even non-chemo weeks it can take a bit to get going due to being tired.  But there workouts have helped keep me off the couch on oxygen.

I am not happy with where I am, and some days when it hits me about all this it really does stink, but I push it away and keep on going and waiting for the next breakthrough.  Things are being developed constantly, so I try to remain as hopeful and as positive as I can.  Like I said, not easy, but to the extent I ditch the sad/scared etc feelings as quickly as I can when they pop up, it helps.

 

Butt's picture
Butt
Posts: 323
Joined: May 2018

NewHere, did they offer you clinical trails.

NewHere's picture
NewHere
Posts: 1110
Joined: Feb 2015

Yes.  Late 2017 was the big spread, but the things were still small enough so I had some time to see if the trial would work.  

There was one immunotherapy trial with a possibility to work, but by August, 2018 (started in May), it was pretty clear it was not working and things were growing fast so I had no real wiggle room left, it had to be brought under control. 

First I got set up with the mold and the rest to have radiation for the tumors in my spine, then a month later back on chemo.  FOLFORI.  They added Avastin in April this year - my oncologist said it was usually better to avoid adding it for a bit of time after the radiation to avoid the slightly higher risk of fistulas.  (Just got hooked up for my 20th treatment of FOLFORI.  On couch with bottle now, only about another 24 hours until disconnectLaughing) 

I keep on asking about trials.  There may be some that I will qualify for in the next few months.  Maybe.  Because I am micro satellite stable (https://fightcolorectalcancer.org/fight/diagnosis/what-is-msi-and-mss/) immunotherapy usually does not work.  But there is some discussion it may help with chemotherapy being more effective.  So it may be a trial like that.  I was really bummed the trial did not work.  Other than long days for the infusion (they had to take EKG every hour or so for 8 hours the first few times, etc.) I had no reaction.

 

Anyway, I am doing everthing I can do to stay healthy and strong to get through each treatment easier and hope to see FOLFORI kick in.  This round not so bad so far.  Just a bit tired and resting on couch.  

Butt's picture
Butt
Posts: 323
Joined: May 2018

Do you have any lung mets symptoms. Sloan Kettering just communicated to me that they don t have any available trails for my situation.

NewHere's picture
NewHere
Posts: 1110
Joined: Feb 2015

Sometimes stairs or bad allergy days can cause shortness of breath.  Weird how it hits, but it is far from constant and adversely affecting my life -  I am doing a lot of cardio - did a long run (slow pace 9 miles) a couple of days before this hook-up on chemo and an hour bike ride in the park the morning I got hooked up to chemo.  I think it is the chemo that throws me off more than the cancer at this point.  The combination can make you feel flu like/lungs congested.  But I am doing that 5-6 days a week, though on chemo week it may be 3-4 depending how fast I bounce back.  I am pretty sure I would be in a lot worse shape if I was not exercising like I am.  With all the things out there, from supplements, vitamins, diets (all of which I am not opposed to) it seems to be exercise is one of the best things proven to help in all this.  

 

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