Chemo side effects tips

[Mirrorplace]

Hi All. I'm having a bit of a challenging week. I'm currently on carboplatin and Avastin. Just had my third round this Monday. Due to temperature spikes at home on Thursday, I was then assessed in hospital. I didn't want to cause a fuss and thought I should just ride it through. Told not to do that. Anyway bloods all checjed out fine, and temperature normal in hospital, although now back home it fluctuates (I was in overnight). I'm suffering with lots of leg pain and other aches which I did have last time, and it did take up to a week after chemo to feel better. Is this all typical, and does anyone have any coping or practical tips? Thx Sue. X

[Lyndy]

Sorry Sue but it is typical! Chemo has cumulative effects but I found that I didn’t always get the same ones each time. Bone pain can be a problem but talk to your team about getting some heavy duty painkillers.

I think about the 21 day cycle as: week one downhill, week two delicate and week three…recovery week!

Temperature spikes should be notified to your team in case they could be the start of sepsis.

Don’t worry, it won’t last forever but equally, don’t feel you have to put up with pain or nausea xx

[Mirrorplace in reply to Lyndy]

Thank you Lyndy. It truly is wonderful when you turn a corner and the symptoms lift, so I look forward to that. It's so hard for our families too. Thanks again for your reply and support. Take care Sue x

[Zssu]

Hi, it used to amuse me that the onco appointment prior to your next infusion is always just as you were feeling back to near normal, and the first thing they ask is ‘how are you’? I often used to think that the steroid withdrawal (dexamethasone, prednisolone?) were responsible for quite a lot of the side effects/fever. Once I had a very important appointment 2 days after I was due to stop them and I asked my oncologist if she could give me a prolonged course to cover it.. Very reluctantly she did but I was amazed how it made a difference. Of course they are very loathe to give you more but worth asking if that might help. I do feel for you, we have all been there but you will get through. Good luck X

[Mirrorplace in reply to Zssu]

Thanks, yes how true that is, when you get quizzed how you are when it's finally all calmed down. I'm beginning to feel a bit better, the pains are less 'throbby', but still there and I feel weak legged. Hopefully all going in the right direction and the chemo is doing it's wonders. Thanks again for replying. Sue. X

[Loorunner]

I ended up on a saline drip after my first week first round of chemo- bloods were fine but my temperature had been all over the place and I was up all night on the loo. I too wondered whether suddenly coming off the steroids might have been too much. I'm now tapering off my steroids more gradually (following oncologist advice ). Still get the aches and pains in week 1 no more trips to a and e so far! If I was concerned though they said I should definitely come in. I take some consolation that it does get better by mid week 2 to week 3. Best wishes x

[Mirrorplace in reply to Loorunner]

Thanks. It is interesting that the steroids initially help with immediate effects then our bodies have to handle it all. It must be a bit of a shock. I have probably felt more constipated, and maybe that adds to how I feel. Wish you well too in your treatment. Thanks again , take care. Sue

[MarleyZ]

Can I ask if you had temperature spikes before your diagnosis, reason is ( see previous posts ) that heralded my occurrence in April 2021 and then post op continued which meant I ended staying in hospital for a week longer, after being discharged ended up back for a fill day as temp spike was hitting 38..8 and upward, all tests scans etc were done, Paracetmol was the main med, they were reluctant to give the antibiotics as they were hoping it showed where the inflammation or issue arose from, basically all came back clear, Christmas day out of the blue had a temp spike of 38.8 when I looked at my notes and the ending of the current spike it was 10 days again all tests done and nothing scan showed liver etc but problem is it could be pointing to other issues which may surface and not only sepsis, so well worth keeping a diary on temp spikes and reporting it. Brought temp down using Paracetmol, ice packs, and a fan which all helps.

In regards to leg aches yes the 1st chemo session and 2nd round left me with leg aches that felt like a sledge hammer was being used suffered that for near on 4 days tks to the weekend and the over counter meds didn't work, ended up with co codmol but didn't need more than just one if those, pain eventually after that turned into neuropathy on toes and hands, still have the neuropathy in toes which courtesy of this chemo which recently finished coming back more noticeably, but less in time that previously. Can try alot to see if it works getting rid of leg pain .. salt solutions incl rock salt (Not normal table salt) elevating legs, deep heat spray or rub may also work, wish you the best in trying to eradicate the pain.

[Mirrorplace]

I can't say I had been keeping an eye on my temperature pre diagnosis. It all happened so fast, where I had an ultrasound and they discovered a large ovarian mass. I'd been having monitoring endoscopies every 3 years due to stomach cancer in the family. But other than the odd polyp and signs of diverticulitis all was clear. I had some digestive issues where I did go hot when I needed the loo, and got tired after. Don't know if any connection. A couple of months prior to my diagnosis I went to the dr and he dismissed my stomach pain as just 'wind'. I felt silly. The next appt told a very different story. I'm glad I'm having the treatment now, at least it's being dealt with. Thanks . Hope you are doing ok. Take care. Xx

[Lochawe]

Sorry you are having a challenging week.. I don't know that i have any tips for you but can definitely say that week one for me is miserable with nausea, aches and pains etc and then the next couple of weeks I feel absolutely fine (although i have only done 2 rounds of out 6 to date) .. i have looked at the other replies and seen the comments about the steriods which i hadn't thought about/ connected which has been interesting - thanks for posting!

[Mirrorplace in reply to Lochawe]

Wish you well in your treatment too, I'm finding in the middle if the horrid side effects I find it hard to be convinced it will lift. Then after practically the week has passed there is a massive improvement (leg pain wise) and I'm ready to appreciate a nice walk. I did have an odd night last night however, I woke up bring sick with bile. Maybe no connection with treatment or this cancer.

[fendweller]

I'm much the same as you Sue ,I'm struggling this weekend ,had Carboplatin and caeleyx Tuesday ,fourth cycle , nausea ,aching , lightheaded , extreme fatigue , I know what to expect but always find it really hard , I have gabapentin for neuropathy and paracetamol ,but my temperature is fluctuating like crazy so I'm reluctant to take it if my temp is on the low side . Always contact your team if your temp is high or low , mine spiked to 38.4 and I had neutropenic sepsis , roll on next week , we'll both feel a bit better ,will be thinking about you .Cheryl x

[Mirrorplace in reply to fendweller]

Hi, I do hope you are starting to feel a bit better following this cycle. This first week is definitely the toughest. So this neutropenic sepsis, did that mean it showed infection? My bloods and assessment didn't indicate anything, and my white blood check was fine. It's good the docs know what they are doing. I think because getting diagnosed with this cancer in the first place isn't straight forward, and symptoms can be confused with other things, it's a juggle to decide what is worth mentioning (and what to just ride through) to them going forward.

[fendweller in reply to Mirrorplace]

It was all bad timing ,long story but I ended up having my covid booster three days before I should have and by the afternoon realised I had a UTI infection again ,by evening my temp had spiked ,I phoned the oncology 24 hour number and they had me in and on antibiotics fifteen minutes later, Dr thought it was my early booster rather than UTI though tests showed infection, my neutrophils were very low ,needed injection to increase them ,I then had a throat infection after next cycle ,my temperature fluctuated but didn't spike . I feel a bit better today , very weak and wobbly but not so sick , I hope you're feeling better too ,this is so hard ,I'm on fourth line ,used to side effects but doesn't get easier . Sending love .Cheryl x

[Mirrorplace]

Thanks Cheryl, take care. Sue x