Chemotherapy advice

Hi Charliebear

Chemo is hard and you are not alone in finding it tough. I know I did.

I am sorry that you have had to be admitted to get your tummy effects under control. 

For me the first cycle was the hardest and the first week of that. The chemo itself and the other medications (steroids, anti nausea meds etc) can all really upset your tummy. 

Keep up with your chemo diary as it can help with your review and to look back on how you were feeling each day. Chemo does seem to follow a pattern which is good because where you have had bad days in this cycle, they can sometimes adjust meds to try to prevent it being so tough next time. 

One thing worth asking about is whether a tapering dose of steroids would help next cycle. For my first cycle I was sent home with 2 days worth of prednisolone and found the sudden drop to nothing on day 3 caused a lot of side effects. From the next cycle the oncologist kept the same dose for the first 2 days and for the 3rd day - it halved and the 4th day - it halved again. It made a big difference. 

With any constipation it was suggested to me by my CNS to try stool softeners and they did help. On days where I had diarrhoea I was told to take loperamide. Anti sickness tablets can also upset your tummy and if they do there are alternatives that can be prescribed. Ondansetron can be very constipating and from memory I had to take them for the first 2 days at home and then stop. That coincided with  the steroids stopping. Domperidone can do the opposite and does not help diarrhoea. It is worth checking with the consultant about doses and timings. 

For nausea- it was worse in the first week and I was told to take the domperidone regularly around 30 minutes before eating- she said that it was better to take it before the nausea kicked in rather than try and deal with it once it was established. 

For meals I ate little and often. For the first week of each cycle I was really off food. I tried to focus on keeping up my fluids and found things like flat lemonade helped with nausea. I also had those thin ginger biscuits that come out at Christmas time and lemon boiled sweets. Your taste may go and if you have a sore mouth they can prescribe a mouth wash which will help. When I did eat it tended to be blander foods and smaller amounts. I also used Complan drinks and made smoothies. I did have some small sized ready meals in the freezer and if I did have a time when I fancied something, I would have it- even if it wasnt dinner time. Sometimes eating my main meal earlier in the day helped- sometimes splitting the meal into 2 portions helped. Sometimes it was just toast. My CNS was clear that it didn't matter what I ate as long as I did eat. 

Fatigue can be tough and I tried to think of it as if the chemo was having that affect on my energy, then it would be blasting away and cancer cells that remained. For the first week of each cycle I spent most of it lying on the sofa, snoozing on and off. By the 2nd week things would pick up- so hopefully in a few days you will find the same. Pacing myself and listening to my body helped- if it's saying rest, then that's what it needs.

Sometimes I found I did not feel like getting up or having a shower but I found that it did help to have a bit of a routine where I got up, showered and got dressed. Coming downstairs with a duvet felt better than staying in bed. By the 2nd week I found I could sit out in the garden and also go for short walks and these helped me feel more human again. Fatigue can also have a mental side to it- you are going through a huge thing and dealing with a treatment which has some really unpleasant side effects. I found things like being social and having friends to visit were also exhausting so left them for the first week of each cycle. When I did have someone come over it would be for a shorter time and I would then rest for the rest of the day. 

I would hope that by day 7/8 you will start to feel as if you are turning the corner. The 2nd week I felt tired but the initial tough effects were passing. By the 3rd week I felt a lot better. 

I also did scalp cooling. With scalp cooling it is still normal to have some shedding. It is part of the process and not a sign that it is not going to work. It can still feel upsetting. Around day 14 mine started and it was began with a feeling or itchiness/ tenderness on my scalp. I also had an irritated sensation- a bit like when you have hayfever- around my eyes. 

With each cycle I had a shed at the same time but I did also start to have a bit of regrowth with each cycle. Treat your hair gently and follow the Paxman advice. Comb your hair with a wide tooth comb to remove any hair that has shed- once it has come out from the roots there is nothing you can do other than do this to prevent any matting. 

I can't remember if I shared the link before but this one is about the scalp cooling. 

The Changing Faces of Cancer- Scalp cooling, Hair loss and Regrowth. - Macmillan Online Community

Hang in there, it is tough but it should start to improve soon. 

If there is anything you want to ask about, please do so.

Jane

I had my chemos on a Weds and the Sun/Monday/Tuesday was worst for me.

i had sleep issues before this, so I asked and they prescribed a weeks worth of sleeping tablets for me for each cycle to help combat the effect steroids had, and this helped me.

first cycle I took the anti nausea tablets they give you for first 3 days and then continued with other ones, which caused me stomach issues, so going forwards I only took the ones for the first three days. I thought I had beginnings of mouth sores during first cycle and was given mouthwash, which I used throughout all the other cycles. I may not have needed it, but if I could prevent by using mouthwash, one less thing to worry about.

Hopefully you will start feeling a little better soon x

Hi again, thanks to you both for helpful advice. I did wonder about stopping the steroids so quickly. I had to take 4 x Dexamethasone for first two mornings, then stop.I will ask if can reduce gradually . It is encouraging to know that I am not the only one with this overwhelming tiredness. The only place I am comfortable these last few days is in bed, Although I have forced myself to get up and have a shower late morning. I am back in bed about 7pm .My husband, who has been supportive and really helping me with everything, doesn't seem to understand this terrible tiredness. He hasn't really said anything, but I can tell he can't grasp it. Perhaps I would be the same if other way round. 

I also had difficulty in sleeping with the steroids and my GP has given me a few sleeping pills. 

I got my anti sickness medication changed when in hospital, which helps a bit. I do find it difficult to eat. I have ordered some Complan ,as you suggested, Jane. I have lost 5kgs already between surgery and chemotherapy. 

Hopefully I will start to feel better soon. Sending best wishes x

Hi Charliebear, 

wondering how you are feeling now as you must be in your second week? I hope any other side effects you had were not too bad.

i have just had my 3rd chemo session and on the first 2. like Waidh, I'm didn’t feel bad until the Sunday after Wednesday chemo. I suffer from constipation without chemo and am taking stool softeners prescribe hospital though you can buy them over the counter (Dulcoease). 
After the first chemo, the CNS suggested I take them the day before chemo 2 to help prevent it. It didn’t, but it was not so bad!
 
Fatigue is normal for chemo. Have you got information such as the MacMillan books, which describes chemo side effects? (pretty sure it’s in the womb cancer booklet). Perhaps you could show this to your husband, I mean the bit about fatigue. 

In week one I have made myself get up and shower every day. I take preventative measures- lots of skin moisturising, and salt water mouthwashes as well as regular teeth cleaning to prevent mouth issues. I take the nausea tablets /steroids as prescribed even though I am not suffering with that

I then am pacing myself and listening to my body. If I need to lie down, I do! The only thing I’ve forced myself to do is to go for a walk. I always say to myself, I’ll just go across the road, but when I get that far I feel I can go a little further. This has been absolutely amazing for me as I always feel so much better afterwards. A combination of getting the body moving, getting the lungs filling with air and being out in nature! Breaking tasks down into manageable chunks is also helpful. I have gradually been sorting through my clothes a drawer / rail at a time! It gives me a sense of achievement!

I still felt annoyingly fatigued until 14 days, but the side effects eased, then in week 3 I have been almost back to normal. I find having something to look forwards to that week, especially if it involves socialising, really helps lift my spirits and distracts me from thinking about the next cycle.

i found the second cycle so much easier, because in the first one I was worrying about every little thing, causing stress. Now I know the pattern I am prepared and can plan ahead as I know when the bad days will be. 

wishing you all the best as you go through this - it is tough, but the cancer cells are dying!