Chemo side effects

Hi Mycelium

This link will take you to the chemotherapy thread on here.

Chemotherapy support - Macmillan Online Community

I had the same chemotherapy in 2022. I can understand your concerns and I remember my consents appointment and being really worried about all the potential side effects. I remember also being told that they have to tell you all the potential side effects, however rare in order that you can make an informed choice. If you think about the leaflet in a packet of paracetamol- it is similar- if you read everything in it- you would probably not want to take it. 

I did have some side effects with my chemo and they were on the whole manageable with medication. There will be a 24 hour support line during treatment. The normal cycle for our chemo is 21 days. The first day was spent at the hospital and home the same day to recover for the next 20 days. The first week of each cycle, I did feel rough but by the 2nd week I felt able to get out and do things again. For me I found that the effects built up with each cycle- particularly fatigue.

During each cycle I had a consultation with the oncologist who would adjust doses and prescribe medication where needed. 

The reason I had chemo was that I had a rare and aggressive type of cancer. I also had evidence of LVSI that was discovered in my post op results. LVSI are tiny cells that can remain and are so small that they are not visible on scans. After surgery I was told that there was no visible signs of cancer elsewhere and that it appeared contained. 

The chemo was to mop up any stray cells whole body wise and also to reduce the risks of recurrence. 

I can understand your worries about making existing health concerns worse and I remember that you had a really prolonged stay in hospital. I remember myself feeling that I just wanted the surgery to be enough and did not want to have to continue and go through further treatment. The thought of chemo really frightened me. In the end after talking to my consultant- I agreed to have the first one and see how it went. For me that was the worst one and once it was done- the others seemed easier as I knew what to expect. 

My main side effects were some hair shedding (although I did scalp cooling so kept a lot of hair). tummy issues, fatigue and some pain for a few days. 

It's a hard decision to make, but for me it was worth it. I am nearly 4 years post treatment. No recurrence. Looking back knowing what I know now- I would still have had the chemo and also the radiotherapy. I actually found the radiotherapy was the tougher treatment to go through. 

Do give the Support Line a call to talk things through, if you feel it would help. 

Jane

Thank you, Jane. It's helpful to have info about your experience. I think one of the things that was new info to me from my session yesterday with the oncologist and which I 'd previously seen no mention of anywhere is the impact on patients with fibromyalgia, and I am genuinely very concerned about this, especially given my age. I so very much don't want whatever time I might have seriously impacted by an increase in fibro symptoms especially as I have been able to get some of the worst of them under some degree of control over the last 10 years or so without prescription medication. It's very kind of you to get back to me so swiftly and I'm glad that your experience was not too unbearable as well as that you are well.

(+) Macmillan Online Community

I do understand your concerns. The above link is a search of all the posts on here that mention fibromyalgia. There may be some that will be useful to you. 

Thanks again, Jane. Sadly, the couple of potentially informative request postings didn't get any relevant replies from anyone already experienced. I guess we're a bit unusual. At least, unlike some of those posting, I have an oncologist who has had chemo patients with fibromyalgia. He said that some of them had to give up because it all became impossible to bear. What I obviously don't know is any additional info about their health, cancer or age so it's impossible to glean anything useful from this. I will contact the Support Line just in case. Thanks again.

Hi Mycelium,

I am sorry to hear your news and that does sound a very difficult and scary decision to have to make. I don’t have the issues you mention and I am 62. I have now had 2 chemo sessions and my side effects have not been too bad, no where near what I expected. I have had a lot of aches and pains and sore feet and have lost my hair. I am very tired, but able to get up and look after myself. In the third week I felt normal. 
I wonder if it would be worth trying the chemo? Is everyone with fibromyalgia affected? Do they have a big enough sample to know that? It seems with other side effects it is a lottery which ones you will get. It would seem a big decision to refuse the chemo considering your cancer diagnosis. 
There is a chemotherapy forum on here, so if you have not already done so, you could repost your question on there as it covers all cancers and you may get an answer from a bigger pool of people. 

(+) Chemotherapy forum

Thank you for your posting, and for letting me know how the chemo is going for you. I hope it progresses well and without too much in the way of difficult side effects. Not really any info about fibromyalgia and chemo beyond what my oncologist had said about some of his patients deciding they had to stop the treatment. At the end of the day I'll probably decide to see how it goes but not 100 percent sure yet. And I 've just now been on the Chemotherapy forum--thanks. All the best for the rest of your treatment.

Hopefully someone on the chemo forum will have some answers for you. Seeing how it goes sounds like a good idea. You can always stop at anytime if you feel things are taking a turn for the worse. Good luck.

Thank you.