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Husband ending chemo at 3 months

Shiraz61
Posts: 15
Joined: Dec 2017

We found a study published online that's persuaded my husband that 3 months of chemo will be enough and 6 months will not be worth it.  Has anyone seen this study?

https://www.cancer.gov/news-events/cancer-currents-blog/2017/adjuvant-chemo-colorectal

 

Almost 13,000 people in the study, several countries, no commercial funding, and they seem very confident that 6 months doesn't provide enough of a benefit to justify the side-effects suffered, much of which can be permanent thereby affecting your quality of life afterwards.

Anyway, he's firm on telling his Oncologist another 2 treatments will be it for him. He finished 4 and it's been very tough on him, along with a bout of C Diff, gastro, and almost hospitalized.  He's 69 and doesn't want to end up with permanent nerve damage and a muddled brain for what's left of his life.  He reckons the next 10 years will be the best years of what's left of his life and he'd like them to be ones not fraught with physical and mental disabilities.  In our own research of personal stories of cancer survivors, it seems that side-effects are downplayed by doctors and you're left with the belief that it's only during chemo and they fade after.  We've found so many stories that go against that narrative, with people suffering neuropathy and other side-effects years after.  Of course, there's always a pill for that & other problems but we're from countries that aren't as contentedly medicated as Americans seem to be, although we do live in the US at present. 

He's T3N1 so fits into the low-risk group. He had surgery in November - a right hemicolectomy.  He's very fit & active for his age. He'd like to stay that way and doesn't see that happening if the neuropathy gets worse.  The study talks about side-effects becoming substantially worse during the 3 to 6 month period.  He also has some very noticeable "chemo brain", a silly nickname which belies the seriousness of what it really is.  He's got an amazing head for numbers and would like to keep that.

Anyway, I find myself supporting and agreeing with his decision but worry it may be colored by my need to stop seeing him suffer.  

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

Quality of life is a major consideration, and the value of those last 6 treatments has to be weighed against all other factors.  (I quit after 7).  To me, the very issues you mentioned were not worth it.  I do have some permanent neuropathy, but fortunately did not develop chemo brain.  I suffered terribly during chemo, and decided it wasn't worth it.  That was 10 years ago.  I did have a recurrence 18 months ago - more surgery, intraperitoneal chemo, but I didn't even consider systemic again.  (And I couldn't complete the IP chemo either.)

For me, it comes down to living versus existing.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Treatment options are so very personal. Your husband,  and all of us who have fallen victim to this disease, we know our bodies better than any physician. I only endured neo-adjuvent chemo pills and 28 radiation treatments. I am stage 4 but opted to just seek alternatives to the heavy duty chemo. I am pleased to say I am finally starting to feel well again, 9 months after diagnosis, and 4 months post surgery. 

Quality of life is so important! My feet are still cold sensitive from taking Xeloda which I stopped taking last August! 

I wish you both wellness and peace during recovery. And long life!

Sincerely,  Beth

Trubrit's picture
Trubrit
Posts: 5221
Joined: Jan 2013

One of the worst long-term side effects for me. 

I'm sick of explaining why I can't remember the year, the list, the easy instructions I was just given. I stumble over words, I go blank and have to look at nothing in order to get my thoughts back. People think its a cop-out, when I talk about Chemo brain. Some laugh and they think you're using it as an excuse. I even had someone say 'Yeah, right!' to me once. 

For me, the neuropathy is easy to live with because it is not painful. I did just get a sore on my heel that I didn't even know was there. So dangerous. 

I just fractured my wrist doing some push-ups. Chemo made my bones brittle. 

Bathroom issues. 

Delicate tissue that splits and bleeds at the slightest touch; caused by Radiatoin.

There are many more side effects, and some are a whole lot worse than the ones I am experiencing. 

Not once did anyone talk to me about the long-term side effects. Not once!

Your husband knows his limit, and its a matter of supporting him. Look forward and not back, once the decision is made.  Ten years is a good goal; and once he gets close, up it another five and then five more.

Make them the best years of his life. 

Onward and upward. 

Tru

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

There are a number of papers that relate to this over the years.  Basically, what they imply is that treatment intensity is more important than duration for eradication of the last residual cancer cells following locally curative treatment, like surgery. 

Two important caveats: 

1.  Treatment intensity doesn't have to be related to side effects e.g. for some types of CRC cells,  5FU + cimetidine, aspirin, metformin and/or celeoxib (Celebrex) may be more effective molecular poisons than 5FU+oxaliplatin (folfox), with far less side effects.  However, the minimum treatment time is less well established for these agents.

2.  For many mCRC situations, chemo forever is the best that can be done currently.  When stage IV patients are misdiagnosed as at lower stages, or patients progress/recur quickly,  the shorter treatment can fail sooner and catastrophically if better monitoring is not in place.  This area is a failure zone in NCCN and ASCO guidelines.   The shorter treatment may also allow closer blood monitoring became of less organ and cell damage, with less distortion and recovery time for blood tests.    NCCN acknowledges 2 month blood testing may have demonstrated better OS than 3 month test intervals in the previous standard of care treatment with 6 months folfox.  I suspect time will show 2 month bloodwork intervals' survival advantage more clearly.  Likewise a scan at 6-7 months might be prudent. 

Also your husband might recover quicker with good supplementation on common deficiencies in cancer patients or get his immune function improved with high potency supplements.  Many supplement programs fail to be high potency in my eyes.  

SophDan2's picture
SophDan2
Posts: 149
Joined: Jul 2017

Like your husband, I wanted to stop afte the 6th of 12 planned treatments ovber a 6 month period. I saw that study about the 3 vs. 6 months and discussed it with my onc. She recommended reducing the chemo but staying on treatments for all 12. I was diagnosed with stage 3C, which is why she strongly recommended stying the course.

I am glad that I listened to her, as I completed all 12 treatments with adjustments to the Oxaliplatin for the final 3 treatments. I do still have slight neuropathy, but after my first CT Scan since treatment ended back in November, I was just told yesterday that I am clean. I truly believe that if I had stopped treatments after #6, the results would have been different.

Whatever your husband decides, I hope that it is best for him.

abita's picture
abita
Posts: 830
Joined: Dec 2017

Thank you. I took a break for 8 weeks from chemo so that I could get my liver lesions out. it felt so good to have all the side effects cleared out, that my brain obviously went to, do I need 8 more rounds. I did 4 before my surgery. Now, I know, for me, it is better to finish in hopes of getting clean scans from now on. Thanks for saying you didn't want to but did it anyway.

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

It's got to be a personal choice.  Your husband wants to make informed choices and that's what it should be.  My treatment left me life long side effects that they never explained but just threw a paper in front of me to sign so they won't be responsible.  Read it, but too late now for me.  If your husband wants to quit than quality is better.  Wishing you both the best.  Let us know how he is doing.

Kim

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I have #4 (Xeloda) in a few hours so that would be half-way through. It is very tough and I'm thinking that 6/8 would be good for me but I need to look at the research so your post is helpful in identifying some of it. One major problem is how busy I am. My wife has requested that I find a document that is worth about $15K for a transaction and I don't have a lot of time to find it so there's a lot of pressure in my life and the chemo really impedes the amount I can get done in work and life. The neuro stuff is annoying and worrisome as well. I have had constant hands/feet stuff since the second cycle and worry that it may be permanent. I will discuss that with oncologist this morning.  I cut myself on a microwave door dart yesterday and there was a little bleeding but that stuff doesn't heal well on chemo so I have a nice bandage on the back of my left hand. I changed the big bandage on my right forearm from falling down the stairs a week ago. I didn't see any infection and it is healing but I expect healing to be slow. There is a bruise mark in addition to the red areas.

So yes, I do understand your husband's case. I'm also T3N1/Stage 3B.

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Shiraz61:

I am T2N0M0, so the risk presented by my cancer is less than your husband's.  However, the decision he is contemplating is exactly what I contempated in December. 

From the beginning, I told my oncologist that I would only do 6 treatments instead of 12.  He agreed so I began 6 infusions of FOLFOX6 in mid November.  The physical effects on me rapidly increased and caused me great concern.  My weight loss was on a steady decline.  It went from about 145 pounds to 128 in a manner of weeks.  My energy level also dropped along with my stamina.  My blood chemistry was very close to the threshold for either transfusions, other medicinal injections or a temporary delay in further infusions.  That is when I questioned the value in continuing the treatments.

Like your husband, I am in my late 60's.  I reviewed some literature about the merits of 6 versus 12 infusions; gathered data from credible sources containing the national, average life span for Americans; and then factored in the survival rates published by the American Cancer Society.  I then took that "fuzzy data" and compared it to the significant and negative impact that the chemo therapy was having on my quality of life and I decided to take my chances.  I stopped my adjuvant chemo therapy after 3 infusions.

Again, I am stage 2 rectal cancer so my medical situation is different than your husband's, but everything else is similar.  As was previously stated, living and existing are not the same.  I have chosen to live the last decade of my life (78 years on average for a male in the U.S.) without neuropathy, chronic fatigue, and chemo brain.  As was also previously stated, this decision is YOURS to make.  Each patient brings individual tolerances and responses to chemo therapy.  The patient knows his/her body best.

Incidentally, I had a CT scan yesterday.  My oncologist will discuss the results with me next week (7 March).  The outcome of my decision to terminate adjuvant chemo early will then be known.  I feel confident about that but even more important, my quality of life has begun to improve!

I wish you luck in your decision making and in the outcome.

Jim

Shiraz61
Posts: 15
Joined: Dec 2017

Thank you so much, everyone:  abrub, Beth, Tru, tanstaafl, SophDan2, abita, Kim, Mikenh, Jim.  I can't tell you how much I appreciate you taking the time to write your own very personal experiences and struggles.  We don't know too many people who've gone through colon cancer, so it's comforting to hear from those in the same rocky boat.  Hubby's still firm on stopping after #6.  I hope to never be in his situation to have to make such a difficult decision.  I had a very early stage melanoma and basal cell carcinoma removed recently and that was frightening enough but it was peanuts compared to what he and you all are and have endured.  All the best to everyone.  I'll keep you posted.

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

It's good that you are by his side in this decision as it's something that can affect him in the future one way or another.  Who knows - we all take a chance on the treatment.  He sounds like he has a plan for his future and he's thought about it thorougly - that's great.  Good luck to both of you.

Kim

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Shiraz, I'm glad to hear he is stopping.  Was he on the Oxaliplatin / Foflox chemo? 

I hve stage 4 colon cancer and I only had 8 rounds of Folfox as was directed by Axel Grothey who I saw at Mayo clinic in Rochester. He does alot of research and is one of the best Colorectal Oncologists in the world.  He said the risk of long term side effects goes up and there isn't much benefit after the 8 rounds.  My oncologist at home clinic wanted me to take like 16 rounds.  I don't know why so many doctors prescribe it for so long. 

After the 8 rounds, I went on maintainence chemo of Avastin and Xeloda.  My oncologist said that stopped working for me. 

I had one round of Folfiri on January 26th and ended up in the hospital.  I was treated for Colitis, and C-diff but then found out all tests were negative so the Colitis was caused by inflamation from the Folfiri.

THe Folfiri also caused my gallbladder to become inflamed and I got a referral to Mayo Clinic for my gallbladder. I'm having a gall bladder procedure called ECRP next week at mayo.

My oncologist said we will figure out another chemo that I may tolerate better.   

Hope your husband does well!  

He's lucky to have a good caretaker.

 

Shiraz61
Posts: 15
Joined: Dec 2017

Yes, my husband is on the Oxaliplatin / Folfox chemo.  Every second Thursday he goes in for a few hours then goes home with a pack that runs for 41 hours and gets removed Saturday morning.  It's exactly as you said, the risk of long term side effects going up during the second half, with minimal benefit, that's convinced my husband to stop at treatment #6, instead of going through the standard 12 treatments over 6 months.  He had #5 today, so one more, and he's so much more chipper and animated, knowing it'll be over in a couple of weeks. But mostly, it was about the side-effects, which we're not convinced are temporary.  From what we've read, and from this very thread, they can be permanent and negatively impact quality of life.  And that was weighing so heavily on him lately.  I was so worried for him. He's very mentally and physically active so the thought of having that taken away from him was more than he could bear.  Some people are fine with trying for that 1 or 2% possible extra benefit, he's not.  He hasn't spoken with his Oncologist yet as he's on vacation this week but he will next week when he goes in for blood tests.

All the best to you, Joan.  I hope they find the right chemo!

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