Giving up on chemo

[Lisa2]

Hi,

I'm 8 weeks post radical resection of gastric tumour. 2/3 of my stomach gone. Thankfully, pathology reports showed localized tumor. 

I had 4 rounds of chemo pre surgery. Just completed my 5th round. I'm not going very well after the 5th chemo. I'm still having limited intake of fluids and solids due to stomach size. I'm going through lethargy, nausea, oral thrush, indigestions, diarrhoea/ constipation, hair loss from previous chemo,  sensitive skin etc.... I found myself crying this time. No more treatment... there are 3 more rounds to go but I can't do it anymore. 

Has anyone not able to complete their chemo post gastric surgery?

[kj]

Hi Lisa2

I had a Whipple with similar reactions throughout my chemo ,to help me get as many rounds in ,the strength of chemo was reduced during treatments,it helped me it can’t hurt to have a chat with your oncologist about reducing strength.

Try and hang in there but I can understand about not having anymore if that’s your decision,

[RJG]

Hi @Lisa2,

Sorry to hear that you are not coping with your chemo treatment.

Short answer

Don't give up! Ask for alternatives.

Your situation?

It is interesting that you had radical resection rather than total gastrectomy. I assume that your gastro-oesophageal junction (GEJ) must have been cancer free and worth saving to minimise negative flow up your oesophagus. Is this correct? What are the details of your treatment protocol?

My situation

Sampling during my initial diagnostic gastroscopy found cancer cells predominantly in the upper portion of my stomach and extending along the lesser curvature. The need to remove my GEJ meant that it would be less problematic for me long-term to 'simply' remove my entire stomach.

My treatment protocol involved:

• pre-surgery chemo (cisplatin, epirubicin, capecitabine (CEX)) - 3 cycles
• total gastrectomy - no remaining cancer cells found (first series of chemo did its work) and there was no evidence of the cancer having spread to lymph nodes or other organs
• post-surgery chemo (oxsliplstin, epirubicin, capecitabine) - 3 cycles

Notes:

• The change from cisplatin to oxaliplatin was made because the cisplatin was causing severe tinnitus and likely to result in deafness.
• I only had 2 cycles of oxaliplatin because of the extreme pain experienced during the transfusions. 

Other than as mentioned in the 2 notes above, I managed to get through chemo quite unscathed. I did suffer from chemotherapy induced peripheral neuropathy, but that was managed by the wearing of gloves and warm socks plus avoiding cold drinks. I still (2 years later) have peripheral neuropathy and have to avoid the car's A/C blowing directly onto my hands or feet, but I can hold my drink (ie, literally and not figuratively).

I still suffer from diarrhoea on a regular (pardon the pun) basis, but that is now part of my new "norm". 

The new plumbing of my intestinal tract has bedded in and I now eat fairly normal meals with serving size about 50% of pre-surgery.

Recommendation

Doctors don't prescribe these toxins to us out of spite - the chemo is meant to help us in the long run. So have a D&M discussion with your oncologist about your side effects to the chemo. There may be other options that will be equally effective that your body is better able to tolerate.  You won't know if you don't ask.

Hugs and best wishes to you,

Rick

[Colin81]

Hi Lisa2,

I can strongly reiterate the other replies, take the time and discuss at length with your Drs. My experience were all blood related cancers and I experienced all of the things you mentioned (and still have a few). First I achieved 6/6 chemo's but was quite difficult, next a couple of years later I did 4/4 with great results and very little side effects, then 5/6 really struggled at No4 did not think I could do any more but was able to do the extra 1, then progressed to 'terminal' status and had 56 doses of a Hypomethylating agent (a type of chemo for MDS) and to top it off a few more doses of chemo (and whole body radiation) for a stem cell transplant. Was it worth it, absolutely, was it horrible, debilitating, yes, would I do it again, definite yes. Talk to your DS/Oncologist, you can do it. Each time is progress to something better. I could always see myself being rid of this insidious issue that plagues many of us. Sit down and have a frank and open discussion, open up about your concern and fears, go forward, ever forward don't give in.

[Lisa2]

Thanks for sharing. Yes, I'm also experiencing other side effect not mentioned.

I'll definitely need to have a good chat with my doctors. 

My tumor is in the lower 1/3 and duodenum. Chemotherapy consists of oxaliplatin, doxetacel and fluroracil.

Treatment protocol 4 cycles pre surgery and 4 cycles post surgery. 

[Lisa2]

Thanks for sharing your chemo experience Colin81. I'm sorry to hear that you have been through so much. 

[Colin81]

Hi Lisa2,

Thanks for your reply, yes I have been through a bit but haven't we all. It took me 17 years to finally be well again ( if there is such a thing with cancer), now 'cured' there is a new me, actually a better one after the trials and tribulations of multiple terrible diagnosis's. It, (the dark past) never leaves me, it takes a tremendous toll of us physically, mentally and emotionally, it will always be a part of us. I was fortunate to have terrific support from all of the medical professionals, I trusted them with my life several times and they repaid me time after time with their knowledge, care, respect and support.

Strangely enough I don't recall (in my hundreds of visits to hospitals) to not seeing someone I thought was sicker than me, it gave me strength to continue on even when we all thought it was hopeless.

I know you have a number of treatment to go through but try not to focus on the whole number, take it one at a time, one more completed is one less to do, before you know it it will be done. Don't give up, don't give in, you are much stronger than you think.

[Lisa2]

Thanks for the encouragement. I find chemo drugs so powerful that it drains one's mind (and body). So much harder to 'overcome' the physical side effects this time around. ... a bit like a 'loosing battle'.

[Colin81]

Yes they are very powerful but they need to be, almost all of my chemo was done as an outpatient except for the 3rd lot (and again for the last lot) which my Dr admitted me for a week or so (they actually did not think I would get through the first dose) the impact of high dose chemo can be quite harsh on your body, for me particularly (for that cancer, they were all different) they thought I would suffer kidney failure. My kidneys have never fully recovered but I did, I was only able to get 5/6 chemo doses at the time but only just I really wanted to stop a 4.

Some effects you can't overcome but you do learn to live with it in the 'new' you.

My wife and I talked about whether I would do any more chemo or not, just let it take it's natural course but I couldn't. Twice the told me I was terminal but I could not give up without a fight, and here I am still here and loving it.

[CaptainAustrali]

I'm sorry, but you need to plant your feet, grit your teeth, and find the fighter inside you.  You need to wake her up and shake her up.

I know it's ghastly.  We've all been through it or something like it.  I have daily pain, and a laundry list of pretty gross, uncomfortable problems as a result of my treatment (3 years ago, mind you, but the problems persist to this day).

The thing is, life holds future moments for you.  Joys, anticipated or suprising.  Little moments.  

Pain and suffering are finite. 

So is life.

If the doctors are right and the treatment is necessary, then it's a simple transaction - the more suffering now, the longer you live.

Cutting your treatment short is risking that you may lose out on some of those future sweet moments.

The fighter in me can't stand hearing that.  He's poking the fighter in you, trying to taunt her to stand up and go just one more round.  And then, when you feel like giving up, standing up again and going one round more.

Please.  Don't give up.  It's hard.  Of course it is.  But you can find strength inside you, it's there.

Chemo is an absolute fucking mess.  It's poison, toxin.  And if we trust the doctors (and I guess we must) it also is saving / prolonging your life.

It's your life, it's your choice - just don't give up hope, and if there's a fight that you have a chance of winning, I urge you to do your best, even if it's hard.