Chemo every two weeks for the rest of my life?!?
Hi,
I got a Stage 4 squamous cell esophageal cancer diagnosis on October 2. The tumor is near my stomach and cannot be removed surgically, while the cancer has migrated to my shoulder bone, a lymph node in my neck, and a spot on my liver. My MD told me just yesterday that I will have to undergo chemotherapy for about 48 hours per session once every two weeks for the rest of my life, however long it may last.
He says the cancer will resurgence if they let up at all on the chemotherapy. I am in shock. In two weeks I will have finished five weeks of daily radiation and the chemotherapy sessions will ensue.
Has anyone else been told they must have chemotherapy every two weeks for the rest of their life? Can such a treatment program even be tolerable? Please reply if you have any thoughts or advice.
Thanks,
One sad lady!
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@teresamartin believe me on the worms. I have pics and I was infested. They can show up on a pet scan as sugar areas just like cancer does. Mexico was out of pocket and I learned a great deal there. My body feels like I had an oil change.
@teresamartin
Yikes on the metastases, Teresa. I can see trying alternative treatment in Mexico if you've wasted down to 92 pounds after chemotherapy! But what is going on inside you now, you're probably wondering. The scans you say can confuse worms for cancer, but DNA analysis of rope worms is a 99% match to human DNA; ergo rope worms aren't worms and cancer is probably just cancer.
Maybe you'd do okay with immunotherapy?
Sorry for your suffering. I hope you get better one way or another.
Best wishes,
Marcia
@maraca I’m very happy with the choice I made! I’m not at all suffering in any way. The very most I ever weighed was 119, I’m very little to begin with. Chemo didn't cause me to lose weight the worms did. They were eating all of my nutrients. I left Mexico Dec 11 at 95 lbs, on the scale today I was 99.8 pounds. I’m actually gaining muscle. I did not have the worms tested I said they are like rope worms. but I’m sure glad they are not in me. Everyone should do the coffee enemas. I am a Christian, I believe we all have a day,
Please keep faith and be defiant to cancer, do your best to stay strong when strong feels distant. I am also Stage 4 esophagus, with my cancer also located in the lower part of esophagus. My cancer also affected lymph nodes all over my stomach but I didn't have it travel to other parts of my body. My oncologist has me on Folfox (probably spelled wrong) and Keytruda, I have had over 12 chemo treatment 3hrs chair 48hrs take home bubble and approx 6 Keytruda treatments. I literally just got back from getting a second opinion from MD Anderson in Houston, it was a wonderful experience, everyone their was so nice and very detailed with their explanations. I am fortunate that I have done real well on my treatment regiment most people would never guess that I have cancer. Im a a bit less energetic and due some memory and speech issues along with neuropathy but Im still active. I went their hoping for the magic cure but was pleasantly advised that what my local oncologist has done for me has had amazing physical response and that they would not recommend any changes to my treatment at this time. Please stay positive, I went from liquid diet to eating normal from loosing weight to maintaining weight. Good luck and prayers on your journey, I think it was Mark Twain who wrote worrying is like paying a bill you don't owe.
@jimurphy1947 atgardencitybeach
Thanks Jim!
You brim with optimism, which is super. I am happy now that the months long radiation on my esophagus, ending in late November, resulted in nuking away my 5 cm tumor there entirely. The Petscan this month showed it's all GONE.
So now, hopefully the Opdivo immunotherapy that starts next will tackle the cohort set of cancer spots in bone, liver, and lymphs.
It's great to be eating solid food after four months of just mush, but chemo with Folfox same as you get does curb the appetite. Keytruda is also an immunotherapy drug, right? Please report how it's working on your metastases and main tumor.
Did you get the esophageal tumor radiated? It worked so well on mine, also squamous cell and low set near the stomach.
I am not too worried, thanks Mr. Clemens (he's listed on my family tree, "also known as Mark Twain").
Since getting this dark diagnosis it seems like every new day arrives gifts wrapped in space and time.
All best wishes,
Marcia
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Typing here is annoying. I wrote "month-long" radiation ( it was 28 days) and the auto correct made it "months long. " Also, every new day arrives "gift-wrapped in space and time," not "gifts wrapped."
@maraca Yes Keytruda is also an Immune therapy, when I was I first diagnosed the radiation doctor told me I had to much disease throughout my abdomen so I was not a candidate for radiation, but my tumor shrunk fairly quickly after a few chemo. There was another immune therapy they tried on me which is more targeted to my disease VyIoy, I had tested positive for the gene for that treatment but it was very hard on me and I requested to go back to the Keytruda since I was doing so well, I was the guy going to chemo on my motorcycle and doing the stairs where with the other treatment I slept for 3 days straight and then struggled with walking and general life for about two weeks after.
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1 Reaction@maraca I certainly will. I had my lab work Friday. Since October when they told me I needed to start the chemo for three days every two weeks for the rest of my life my CEA level has come down from 8.8 at that time to 7.9 Friday. I think that is a really good sign.
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1 Reaction@teresamartin I tried to post a picture, but I cannot figure out how to do it on this site
@jimatgardencitybeach
Hey Jim,
Stay on that motorcycle if you can. It seems our kind of lower set EC navigates to the abdomen lymph nodes, as yours has, and mine (I think.) It's good to hear you do well on the Keytruda plus Folfox. I am still waiting to start Kosovo immunotherapy on January 26, plus Folfox. Missed out on 2 weeks of any chemo just now due to a scheduling snafu and hope the cancer isn't going wild in the interim. I am very tired physically so keep wondering if it's the cancer wearing me down as I can't blame the chemotherapy just now.
I hope the lapse in treatment doesn't set me back is all.
Thanks for being so positive minded, Jim.
Marcia
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