Chemo paused for 3 weeks after just starting first cycle.

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Hi Everyone,

I’m currently a week into a three week pause of my CAPOX chemo. By the time I got home from the hospital after my first IV of the Oxaliplatin I was already feeling really unwell. I’ve basically copped for a lot of the side effects and to a pretty severe extent. I was bed bound for a full seven days, everything hurt and ached and I was so exhausted. I would force myself to get up and take shower, by the time that had finished the shower I need to climb back into bed. I knew it wasn’t going to be fun but I was still shocked by just how intensely it hit me.

The side effects I had were immediate neuropathy, not just triggered by cold. I could barely hold my phone to call my wife to pick me up from the hospital. I couldn’t hold a warm mug of tea without my arms shaking. We have a wooden bed frame and touching that hurt. The neuropathy has faded but still comes on intermittently, mainly triggered by cold but not always. Last Saturday was ten days since the infusion and I was back on my feet and decided to go to watch the football (big Mansfield Town supporter). I wanted a distraction from how rubbish I had been feeling and actually enjoyed the game but soon realised clapping was painful and the cold set off the neuropathy in both arms and hands and actually down into my legs. It took a good day for it to ease. The next day I had pain in the back of my thighs and we figured out it was where the cold plastic seat was pressing on my legs.

I felt incredibly nauseous so was taking the anti nausea meds they gave me. Whether it was the anti nausea meds or the chemo itself I’m not sure but I ended up with severe constipation. I’d just started to understand what worked for my bowels and now they were all over the place again. I was advised by the Chemo Response Team to take a couple of Dulcoease and they should start working within a day or so…..nope within an hour I had gone completely the other way and now began four or five episodes of intense diarrhoea. It’s taken almost two weeks for things to calm back down to something closer to my new normal.

I’ve had muscle spasms in just about every part of my body, the neck and facial ones weren’t nice, in particular the uncontrollable quivering lip. By far and away the most worrying was the crushing chest pains I experienced. The worst of these being at half 5 Saturday morning and resulting in a 999 call as it wouldn’t stop, I honestly thought it was a heart attack and I was done for. Anyway, after multiple ECG’, bloods and a chest X-Ray they found no cardiac event and put it down to a music-skeletal reaction to the chemo. Since I stopped the treatment it’s not happened.

My telephone appointment with my oncologist later that week was changed to a face to face meeting. He was lovely and couldn’t believe just how unwell I had been or looked so he said we’d stop for three weeks and then see how I feel. He discussed the possibility of a much lower dose next time (either 60% or 70%) but said there’s still no guarantee I wasn’t get all the side effects again and with it being cumulative I’m worried it could hit me even harder. I honestly don’t know what to do going forward, I don’t want to let anyone down but I can’t handle the thought of being the unwell again and there’s something inside me saying don’t do it. I was worried about how Id tolerate chemo to start with, now I’m terrified and don’t think my body can take that kind of punishment again. It made the recovery from surgery seem like a piece of cake and that wasn’t without its dramas.

I know chemo affects everyone differently and it’s just really whacked me. I’ve got a couple of weeks still to decide but just don’t know what to do.

Craig123 2 months ago

Not that it needs any clarity but a music-skeletal reaction should say musco-skeletal but the edit post function isn’t working. Certainly didn’t feel like dancing!

court 2 months ago in reply to Craig123

Hi Craig123

That is a tough set of side effects that you navigated . I have just tried to flip back and see if your chemo is mop up treatment !! But can’t find your info .

My mum had a tough time too but she was a stage 4 patient and had to find a way through . They did reduce her dose which for her really did help but in the end they took her in overnight and slowly infused her through the night . This made a big difference too . Cumulative effects were not a given for her . Cycle 2 and 6 were her worst with an emergency admission on the 6th .

I think part of her issues were around her electrolytes and dehydration . Once she got them managed things did get better but she had to slowly sip water throughout the day as a big drink in one sitting was just not possible. The only upside for her was it chased the cancer right off the scans . It took two of us to carry her to bed at times . I don’t often read of this level of reaction. Here so don’t think it’s that common .

Sounds as though you need another chat with your team . Our helpline staff might be a help to you as they can access nurses ,

0808 808 0000

take care ,

Court

Helpline Number 0808 808 0000

Kareno62 2 months ago

Hi Craig123 Gosh you do sound to have had a tough time of it. From what I can see from previous posts you had 2/29 lymph nodes affected and some other sort of lymph involvement and chemo upped your 5 year survival rate from 80% to 94%? That is a big increase in effectiveness so I can see the benefit of continuing. It’s quite common so have a dose reduction to combat the side effects but, as you say, it could be cumulative and you’re back to feeling rubbish again.
It’s a tough call but please don’t feel like you’re letting anyone down. The surgery removed the tumour and the 2 affected lymph nodes so this is just the belt and braces. Perhaps you could clarify the significance of the other lymph thing involvement - was it something like EMVI? Would the capecitabine tablets alone be of any benefit? I still suffer with neuropathy in my feet 7 years after finishing treatment - it’s not debilitating, more annoying if anything - but if you’re getting badly affected now then it’s not something that you want to be stuck with in the future if it can be avoided.

Sorry that I’ve not been much help but I hope you can chat it through some more and come to a decision that you’re happy with?

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Maninbath 2 months ago

Hi Craig123, my chemotherapy was pretty rough too - read my profile for further details. My chemotherapy plan was four rounds with up to another four to follow. Even though the second four only offered a 2.5% survivability advantage I was determined to have all eight rounds. It was rough but I got to six before the onset of a neurological condition (probably caused by the stress of the cancer) brought my chemo to an abrupt end.

I am now Stage 4 and incurable and, in hindsight, given the level of lymph node involvement, the adjuvant chemo was always likely to have a low chance of being curative but would I have made different choices - I don’t think I would.

Good luck with whatever decision you make.

Maninbath

AlbaH 1 month ago

Hi, hope things are going better for you now?

I was due to have 6 cycles of Folfox but the oncologist has just stopped at 4, mainly because of extreme exhaustion. Like you, I felt I was letting people down but couldn’t argue with his reasons for stopping. He said his priority is to keep me healthy and get me through the op with a good recovery and he didn’t feel 2 more chemo cycles would help that. So, I’ve now got a bit more time to gain strength and build myself back up!

AlbaH

Craig123 1 month ago in reply to AlbaH

Hi AlbaH,

thank you so much for the message. I’m much better than I was thank you but still experiencing side effects (now over a month since my one and only IV). The neuropathy comes and goes, for example it’s been quite intense today and in my legs, feet, arms and hands. I still get really tired very easily.

i met with the oncologist and we’ve decided to stop the treatment, the side effects were so severe after just one dose. I’m totally comfortable with the decision and felt a huge sense of relief when I made it. I will see what the future holds and deal with it one step at a time.

i hope you’re not feeling too guilty, four cycles must still be hugely beneficial to you and I hope you can now start to recover. Well done for managing four cycles and good luck with everything.

Tannith B 1 month ago

My son got some neuropathy with his platin drug for chemo (cisplatin, not oxalyplatin like you). He tried first aid cooling bags ( you can get them online) for his feet, stuck in some extra large plastic over shoes from Temu, to keep them in place. Couldn't try them on hands because of the hospital equipment. Result: next chemo session no neuropathy in feet but some in hands, though not nearly as bad as yours. The cooling bags are sold to put on injuries, like th old "bag of frozen peas" trick.

AlbaH 1 month ago in reply to Craig123

Hi Craig123,

We’re so lucky to have oncologists who listen and respond to what is best for overall health of each individual patient & adjust treatments accordingly, rather than insisting on delivering a standard package to all.

Keep feeling positive and hope the neuropathy eases with time! Like you, I have never felt this level of fatigue and was quite active before my diagnosis so the chemo side effects have come as as a complete shock!

AlbaH

Groverthewoodsman 27 days ago

Just a quick thought.. Did you and your oncologist discuss trying the oral route of Xeloda? Perhaps that is a "moot point", but I did go that rout for about a month when my chest port had a hematoma and wasn't usable. Again, if this isn't applicable please disregard.