Chemotherapy.

Yes but I'm a warm person anyway, I took a small personal fan with me. 

H

Hi Sassy

Yes, but it was a heatwave when I had my last chemo. Even with the cooling cap on I felt warm.

For a few days after each chemo I did feel warm and had a flushed face due to the paclitaxel. 

it is a good idea to take your temperature regularly as feeling hot could be a sign of an infection so it is a good idea to know what is normal for you. If you do have any signs of an infection- feeling hot, unwell, shivery etc it is really important to call your hospital 24 hour line. The number is likely to be on your sepsis alert card. 

Jane

Thanks Jane.

I'm constantly worried about my serous grade 3 diagnosis. At present I'm having taxol and carboplatin.  Feeling rough from day 4 - 8. I've had two rounds and although I'm using the cold cap my hair is shedding. I'm finding this devastating. Wish I felt stronger about everything. I'm going to have to make a decision re e external radiotherapy. I'm sitting on the fence about it, and worried about being judged regarding my decision. 

Hi Sassy

Chemo is not easy.

Shedding hair is normal with the cold cap and it does not mean it is not working. One sign is if you have lost body hair but still have some hair on your head- then the cold cap is doing what it should be. I also believe it helped protect my hair follicles. You might actually notice a fine regrowth during chemo due to it- I did. 

It is hard to be strong when having such aggressive treatments and it is important to make the right decision for you and not worry about others judging you for your decision. My only advice is to make sure it is an informed choice and find out all you can. I know during chemo the last thing I wanted to think about was radiotherapy- so I focussed on getting that done first. 

If you do go on to have radiotherapy - I had a consents appointment just before my last chemo- but the actual radiotherapy did not start until after 3 weeks. So there is no rush to make a decision. Even on the day I was asked if I wanted to go ahead and did I have any concerns. 

If there is anything you need, then you know where we are.

Jane

Hi Sassy.

i have read Jane’s reply, so won’t repeat some of what Jane has said.  My treatment plan was radio with 2 lots of Cisplatin first followed by 4 lots of Paclitaxel/Carboplatin.

i couldn’t get my head around the further chemo, so agreed with oncologist to kick into long grass until I had completed the radio. He was brilliant, and agreed sensible approach, and stuck with it, i.e. it was never discussed unless I raised the subject. So please don’t think you have to make a decision now. 

I didn’t do the cold capping and the hair loss for me was a huge emotional issue, so can understand how you are feeling. Have you read Jane’s blog about using cold cap, Jane including photos of her progress by months, just thought it might give you hope re your hair journey.

Thanks Jane,

Just having a wobbly day cos I'm not feeling so great. I feel certain that when I raise the questions regarding side effects of radiotherapy the answer  is most likely to be " everyone reacts differently ". I need hard facts as that's the type of person I am.

I have a problem with trust issues for which I need to change my mindset. If chemotherapy is a systemic drug ( treating whole body what is the need for radiotherapy?)

Thanks Waidh,

I know it's my body and my decision whichever one I make but being a bit of a people pleaser I don't want to be deemed a nuisance with my indecisiveness. I took a while to make a decision regarding chemo. However, although I feel rough for a few days of the cycle I'm pleased to be receiving it otherwise it would be another layer of worry.

Thanks to you and Jane, so nice to feel included. 

I am sorry to hear that you are having a wobbly day. Chemo is hard and it is hard when you are not feeling great. For me I normally started to feel a bit better by the second week post chemo. 

I remember my radiotherapy consents appointment and the consultant saying that it is hard for them to predict who will be more or less affected during the radiotherapy. It is also hard to predict who may have Late effects. 

Through my own experiences and by being on here - it seems that some people are more greatly affected than others and there doesn't seem to be any common link. A few seem to get off lightly and just have a bit of a dodgy tummy/more minor effects that clear up fairly quickly. Most people are advised to look at their diet and I know for me I ate low fibre and limited dairy. This was through trial and error of what affected me. 

Some people seem to have more tummy experiences than others. During my radiotherapy sessions I did meet a lot of people going through pelvic radiotherapy for gynaecological and prostate cancer. Pretty much everyone had some diarrhoea and most were given loperamide to manage this. A few had some sore skin and were given creams. Most said they had fatigue but the daily trips to the hospital were for me a factor in this. 

Through being on here and also from talking privately there are some ladies who have had longer term effects. These tend to be diarrhoea, IBS type symptoms and bladder irritation. 

If there are longer term effects then there is often things that can help. For me it is about watching what I eat, having a regular routine and using medication where needed. I do get some achy pains that line up with my tattoo dots but these may be due to chemo. 

It was explained to me that chemo is the systemic treatment that will hopefully mop up any stray cells that have got into the blood/lymphatic system , that could in time travel to somewhere new in the body and set up elsewhere. 

The radiotherapy was described as necessary as it focusses on the pelvis which is where the cancer tends to recur more often. My consultant explained that I needed both and both work in a different way but with an aggressive cancer then they throw everything at it to effectively mop everything up. 

So chemo works by trying to prevent the cancer cells from dividing but radiotherapy works by damaging the dna of the cells. So they work together, in different ways as a sort of double whammy for the cancer.

MIne was not serous but carcinoma sarcoma which is also an aggressive grade 3 cancer. With any grade 3 they normally give the follow up treatments, even if the cancer is at an early stage. I remember being told it was better to do everything to prevent a recurrence with a grade 3 cancer than to try to treat it, if it came back. 

For me the treatment has left some effects but I am almost 3 years post treatment. I do not regret having the treatments. 

The best thing is to focus on your chemo for now and then when it is time to decide then I found it helpful to write a list of questions- everything that worried me and have it ready for the consultant. 

Jane