Chemo every two weeks for the rest of my life?!?

Posted by maraca @maraca, Nov 8 8:45pm

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!

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

While this prognosis can certainly be true, it just depends how YOUR body and YOUR cancer responds to chemo and immuno. I've seen many become surgery eligible after treatments. But without treatments... you will surely (and quickly) lose your battle.

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I've been battling stage 4 ESCC for 7yrs. I have undergone several rounds of intensive radiotherapy, chemotherapies (FOLFOX and FOLFIRI) immunotherapies
(Pembrolizumab and panitumamab). While I've been fortunate enough to achieve several excellent responses to these various treatments, including a period of > 2 yrs of PET and CT-MIPs scans that showed NED. Theses series of treatments while modestly effective at providing disease control take a debilitating toll upon your body. They oxyplatin component of FOLFOX causes peripheral neuropathy, neutropenia, and vasculopathies.

The irinotecan component of FOLFIRI may increase risks of bone marrow dysfunction and risk of myelofibrosis and cerebellar/neurologic dysfunction.

All of the monoclonal immunotherapies also have significant adverse events associated with them including the development of infusion site reactions, anaphylaxis, cardioxicities and the development of various autoimmune diseases.

That said, I've endured all of these long term treatment regimens, albeit with a somewhat diminished QOL. I think it's been worth it as everyday above ground beats the alternative.

Maintain a positive mental attitude, exercise as much as possible ( walking, seated ellipticals, light weights and pay attention to your diet/nutrition/ hydration
You should work with your oncology team to adjust the dosages and infusion rates of your various therapies. These steps help improve tolerability via a slower onset of the pharmacodynamic effects of the various chemo-immunotherapy agents. If you achive stable oligomeric disease control you may placed on low dose 2nd line maintenance chemotherapies (FOLFIRI or Leukovorin) or lower doses of immunotherapies to maintain disease control and treatment toxicities.

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Profile picture for davidwrenn @davidwrenn

I've been battling stage 4 ESCC for 7yrs. I have undergone several rounds of intensive radiotherapy, chemotherapies (FOLFOX and FOLFIRI) immunotherapies
(Pembrolizumab and panitumamab). While I've been fortunate enough to achieve several excellent responses to these various treatments, including a period of > 2 yrs of PET and CT-MIPs scans that showed NED. Theses series of treatments while modestly effective at providing disease control take a debilitating toll upon your body. They oxyplatin component of FOLFOX causes peripheral neuropathy, neutropenia, and vasculopathies.

The irinotecan component of FOLFIRI may increase risks of bone marrow dysfunction and risk of myelofibrosis and cerebellar/neurologic dysfunction.

All of the monoclonal immunotherapies also have significant adverse events associated with them including the development of infusion site reactions, anaphylaxis, cardioxicities and the development of various autoimmune diseases.

That said, I've endured all of these long term treatment regimens, albeit with a somewhat diminished QOL. I think it's been worth it as everyday above ground beats the alternative.

Maintain a positive mental attitude, exercise as much as possible ( walking, seated ellipticals, light weights and pay attention to your diet/nutrition/ hydration
You should work with your oncology team to adjust the dosages and infusion rates of your various therapies. These steps help improve tolerability via a slower onset of the pharmacodynamic effects of the various chemo-immunotherapy agents. If you achive stable oligomeric disease control you may placed on low dose 2nd line maintenance chemotherapies (FOLFIRI or Leukovorin) or lower doses of immunotherapies to maintain disease control and treatment toxicities.

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@davidwrenn
Thank you David. You've been through so much! You also have a grasp of all the language related to treatment and the pathology in medical terminology, which I don't understand so much.
Exercise, attitude, diet, and hydration I get. The rest all Latin to me.
Good for you and 7 years counting. Thanks for sharing this hard-earned knowledge.
Marcia

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Pretty much the same here, but they added Keytruda and that's been helpful for me I have put some weight back on and can eat fairly normal, good luck and take care but try and be as active and positive as possible, don't waste anytime you have left, those would be days stolen from you.

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Profile picture for jimatgardencitybeach @jimatgardencitybeach

Pretty much the same here, but they added Keytruda and that's been helpful for me I have put some weight back on and can eat fairly normal, good luck and take care but try and be as active and positive as possible, don't waste anytime you have left, those would be days stolen from you.

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@jimatgardencitybeach
Thanks Jim!

I am aiming for active and positive, and you guys here are plumping up my readiness to face what's ahead. It's a unexpected situation still, so I appreciate every bit of advice and response you all can offer.
Marcia

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I have been taking chemo every 2 weeks since February. I have esophagus cancer stage 4 . It had spread to my liver and a rib but the chemo got the tumor in liver and rib and my esophagus is showing thinning. So just do waht you can as far as chemo and try to keep a good attitude about it. Praying always. God has it worked out no matter what way it goes.

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Indeed. Man proposes, but God disposes.

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Profile picture for davidwrenn @davidwrenn

Indeed. Man proposes, but God disposes.

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My husband was also diagnosed with stage 4 cancer at the end of May and began treatment on July 22, every two weeks. His doctor also told him the same thing regarding treatment every 2 weeks for the rest of his life. We are so ecstatic that his PET scan at the beginning of November showed a complete metabolic response to treatment—praise God for the shrinkage! The doctor was receptive to moving treatments to every three weeks since he’s responding so well, and we’ll rescan in three months. Praying you will also respond beautifully to treatment and be able to adjust your schedule soon.

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Profile picture for jmaaccg @jmaaccg

My husband was also diagnosed with stage 4 cancer at the end of May and began treatment on July 22, every two weeks. His doctor also told him the same thing regarding treatment every 2 weeks for the rest of his life. We are so ecstatic that his PET scan at the beginning of November showed a complete metabolic response to treatment—praise God for the shrinkage! The doctor was receptive to moving treatments to every three weeks since he’s responding so well, and we’ll rescan in three months. Praying you will also respond beautifully to treatment and be able to adjust your schedule soon.

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@jmaaccg
Thank you for sharing this good news about your husband! That encourages me to hope that this disease may not take over so completely like my doctor indicates. Maybe I will do okay somehow.
Marcia

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