Chemotherapy fatigue and other issues

[mau123]

Hello everyone,

Returned from seeing my mother in Italy last week, she has just completed her 3rd cycle (from 4) of chemo, taxol/carboplatin every 3wks. She seems to be coping not too bad considering how hot its been out there, her morale has been good even with the hairloss.

The main symptom which she is finding increasingly frustrating is the fatigue which prevents her from doing anything for long, even simple household chores tire her out. She does go for a walk (20-30 mins) every evening when temp is cooler, otherwise she is fairly housebound. She is eating well, and whatever nausea there is seems to be well tolerated.

Is this level of fatigue the norm, and does it get worse with each chemo cycle? my mothers age is 73.

Also is there anything she can take to boost her energy or immune system to help with the chemo ie food supplements, vitamins, herbs etc?

I was with her while she had her blood tested prior to last cycle and asked if they were also checking the CA-125 level, was told no. Does it need to be checked during chemo or will it be checked at the end when i assume they will re-scan her? The plan is they will then perform the surgery to remove visible tumours.

Thank you for kind help and support

Mauro

[Whippit]

Dear Mauro

It must be hard having your mum at a distance. Good though to have this site for support, and it's open to your Mum if she feels confident with IT.

Generally chemotherapy affects everyone differently but I'd imagine at her age she may well feel tired - particularly for a few days after each infusion. I would recommend a good all-round diet eating plenty of fruit and veg. I found the 'Anti-Cancer Diet' book very helpful and worth reading. You can order it on Amazon and get it sent to your Mum if she hasn't got it already. There's me assuming she's an English speaker! It is a highly acclaimed work so perhaps it's worth finding out whether it's been translated if your mum speaks another language.

It may also be the heat is affecting her. The heat wave we're currently experiencing in the UK is making me feel exhausted even though I'm delighted to see a bit of sun at last.

As for CA125 tests, I had one taken a week before every chemotherapy infusion and have them before my 3-month checks. There's a range of opinion on this. It doesn't necessarily reflect accurately what the tumours are up to from week to week as it's affected by other conditions and can give an inaccurate portrayal. Given your mum hasn't yet had surgery to remove tumours they may well want to test her after surgery for a more accurate impression. The most important thing is your mum is coping well and seems upbeat. My oncologist always used to say to me the best test of the way things are going was to look at my general health. She always used to say if I felt well it's the best sign.

I wonder if there are any gentle exercise classes such as yoga or pilates that your mum could join - depending on her general health. I really missed swimming which I was told to avoid whilst on chemotherapy. Next time I shall ignore that advice and just make sure I don't swallow mouthfuls of bath water. It's good to have exercise - good for the morale and good for the body.

I wish your mum well.

xx Annie

[mau123 in reply to Whippit]

Thank you for your advice, i will be going to visit again in the middle of August, by then she will be on her final 4th cycle of chemo.

I will try to find out more precisely what the course of action will be, ie how soon do they hope to operate, CT scans etc.

As she lives in a rural village setting, she is receiving her chemo from the nearby provincial hospital. Her oncologist+ gynocologist are based in the university hospital in Pisa 70 miles away, so getting info can be sometimes difficult, phones never answering!

[Solange]

Hello Mauro,

I was 64/65 when I had my chemo and I sympathise with your mum. I couldn't believe the extreme fatigue the chemo (same as your mum's) caused. I was warned that it could be tough but nothing prepared me for it!! I'm a very positive person and knew I could do everything I wanted by stint of sheer determination - but I couldn't. I couldn't even read - something I wouldn't have believed possible. I'm never without a book close by. Even chatting to family or friends made me feel bad and my head spin. It did improve after a week and a half each cycle - when I used to try and carry on as normal. I used to do gardening for a few minutes then slump on a stool and almost despair - but it all got gradually better and I could do more and more. Please give your Mum my sympathy and reassure her she WILL get more energy - to be patient. (Not easy !!)

Also, from when I finished my chemo, my Oncologist didn't order a Ca125 test - not even for my first appointment, three months later. Some Oncologists don't always think it neccessary as it may not be accurate. As regards food to help - lots of bright coloured vegetables and fruit was recommended to me.

Probably easily available in sunny Italy.

Best wishes to you both, Solange

[Hidden]

Hi Mauro,

I honestly think it is the norm to be extremely fatigued... I have finished chemo for the second time...both times I was very very exhausted when I was on chemo...and I am still the same even though I have finished.... It has just become a way of life for me now....best wishes to your mum and hope all goes well for her.... Love x G x

[TinaWright]

Dear Mauro,

I agree with everything others are saying here. To be honbest your mum is doing well for herself if she is able to take a 20 to 30min walk in the evening at the age of 73.

I was 52 when I was having my chemotherapy and it whiped me out completly, no way could I walk further than the garden gate. I even had no choice but to apply for a disability badge because my fatigue was so chronic.

Now, coming up to 2 years later (this December), I do have some better days at long last, it wasn`t the cancer itself that floored me to a crumpled heep but it was the treatments and I am still getting over it.

Like Gwen it does become a way of life, we tolerate the changes because we have no choice, it does take a lot of getting use to especially if your mum has had a healthy active life until this. We just have to accept we are not as we where, once we can do that we learn to live again, just in a different way than before, your mum needs to give herself permission to have an OAP day, tell her I have lots of those and I will not be an OAP for over 10 years.

As regards to her having a CA125 test, I think different areas check or don`t check, they may not do that for your mum until after the surgary or treatment. Most of us are checked every 12 weeks. I had mine taken a couple of days before the chemo - now I have one about a week before each oncology appointment. Same as the other ladies really.

I guess they must do things differently in Italy or maybe your Mum`s CA125 wasn`t raised at the point of diagnosis. My advice would be to ask her oncologist why she is not being tested and tell them that we are. It also may be worth paying privately for the test but do talk to the oncologist first or your mum must.

I know how devestating it is to see your dear mum go through this - my mum too at the age of 44 - 47. Mum`s are precious they are what keep our buttons stitched on, without them it can be a lonely world, we always need our mum even if they do live a distance away.

And mum`s always want to be the strong one`s for the children, no matter how grown up they are - I feel the pain for my two daughters too. Its so hard for you all - so stay in touch with us and keep us up dated how your mum is doing. Try not to worry about the fatigue too much - I looked at it this way, this must mean its doing its job properly, I think I`d be more worried if I had felt well.

Love Tina xxx

[poleglass]

why is swimming not allowed while you are in chemo as i wasnt aware of it .i was going to start swimming tohelp with my weight gain but will wait till i get a response from site