Help with chemo decision

Dear StClares

I hope you are doing well, and you’re keeping your head up. I think this is a very hard decision and question. I would say there are a few things to consider here. It is not just your age but your general fitness levels, if you are capable of getting up and about that is very important. Usually the doctors assign a performance status/ fitness score which is an attempt to be objective about the whole thing, I think that’s something to consider. My mum did deteriorate during her chemotherapy but everyone is very very different- and it wasn’t truly disabling until the last cycle, around cycle 7, and by that time the tumour had responded well. Not everyone gets the same side effects or all of them - mum got all of the ones on the MacMillan website- peripheral neuropathy, palmar plantar, nausea (but no vomiting). She also got bad leg aches, possibly due to the docetaxel possibly due to the pegfilgrastim injection which they give sometimes to some people to limit chances of serious infections. For the most part, cycles 1-4 she was weak for the first week after infusion, then gained her strength for the last week. Then the later ones were a bit harder and by the last one it took about 4-5 weeks to recover and they didn’t give the last cycle then. She had all hers upfront- most have 4 and then surgery and then 4 but she had 7 back to back.

Do you know how many cycles it is total? And how will they be monitoring you/ how frequent. Is it symptom based or will you be having bloods, CT/PET scans or endoscopies? Possibly worth asking these questions as they might factor in your decision. I’d say you could try one cycle, and then make a decision as providers might be different. The doctors kind of said the first time tells you what side effects you’re going to get, with regards to lethargy etc. but it’s worth knowing the side effects are cumulative- which they also said to us. It seemed for mum, they got worse but some cycles (3 and 5) were actually more manageable for her but some of them were bad. It’s hard to tell essentially there is little pattern or rhyme or reason for her at least. If you decide to have it now or even later I’d be very happy to send you some of the details of the side effects, I’m sure you’ll be told them, but let me know if you want it. Sending you my best and lots of love xxxx

Dear Nnnnn,

thank you so much for your quick and detailed reply - It’s exactly the sort of experienced information I was looking for,    Though I do know everyone is different.   I haven’t had nearly enough information from my nurse specialist or oncologist (including how many cycles!) but I’m just finishing a list of questions for them which your message will help with.  I will definitely get back to you.   In the meantime, how is your mum doing?
thank you and the very best of wishes.

SCLARES  xxxx

Hi

I decided not to have chemo after surgery but I did have ECX chemo before surgery. My reason for not having it were that the chemo had completely eradicated the tumour so I had a clear pathology which is unusual! 
I found chemo very hard before surgery and was told that it was harder after surgery. I was just beginning to gain weight too. I also was concerned that the risk outweighed the benefit. I was lucky in that the surgeon was really clear that he would not recommend it in my case. 
I think they offer it so that if there is a recurrence, they have covered it!
I would ask a lot of questions but prepared that at the end of the day, it will be your decision!! 
Not easy but more information will help your decide!

Thank you Jac - really good to know you’re in the clear! It’s a good feeling isn’t it?  I remember the relief after a mastectomy 20 or so years ago, though I did do an ‘in case’  course of radiotherapy after, which wasn’t hard at all and 3 months after surgery was learning to ride a motorbike on a Greek island.   It’s a bit different this time and I wish I’d been thought fit enough for chemo before surgery.   So now I have some lymph node involvement and cells in the margin to deal with.   Hmmm.   I’ll let you know how it goes.. 

All joy and good wishes to you.

clares x

Hi, I had FLOT chemo x4 before and x4 after. My biopsies came back negative but I had the last 4 to mop up as they say in case there was any stragglers left. I found chemo before TG worse than after… still wasn’t pleasant but not as sick (not that you can be sick much with no stomach). Hope this helps. 

Michele 

Thanks  Michele = that’s helpful and encouraging. I still don’t know how many cycles and my oncologist is on holiday, Still if it was only 4…, it sounds like there’s an up side to having no stomach.   I’ll let you know what happens,

hope life continues to be joyful

clares x

Thank you… 

Take care 

Hello, I also had FLOT chemo after my TG. Having had 4 sessions pre op I knew it would be bad 3/4 days after the treatment, but remember that it is to make sure all the cancer cells have been eradicated. 

Hello, I also had FLOT chemo after my TG. Having had 4 sessions pre op I knew it would be bad 3/4 days after the treatment, but remember that it is to make sure all the cancer cells have been eradicated. 

Hi StClairs, just to say the decision of having chemo or not was taken out of my husbands hands. The hospital doesn’t give chemo for stomach or Oesophagus cancer to over 75s, the surgeon said they found that age group doesn’t do well with it, he was 79 at the time, he was fit enough more like a 70 year old. He had his operation in Jan and think he’s doing fine. Although it’s scary for me to think he didn’t have chemo and luckily he doesn’t think about it. Whatever you decide it’ll be the right decision for you. Good luck xx