My chemo

Hello Craigavon,

Yes, I’ve also been told that there’s nothing I can do, just have to wait.  Really frustrating as it may mean we have to cancel a holiday we had booked (2 years ago!) for 15th in the Highlands.  C’est la vie!  Good luck with the remainder of you sessions.

I dont understand why you're being told there's nothing you can do as I'm injecting myself with Granocyte between treatments to get my immunity back to where it needs to be for the next treatment. This is being prescribed by my oncologist.  X

I will certainly ask about that possibility when I speak to the Macmillan team next week.

Hi Hermintrude

Ive just finished my 12 rounds of Chemo, Folfox and for the last 6 they gave me filistrang (probably spelt it wrong!) to keep my white blood cell count up. I had daily injections for 5 days starting on the 5th day after chemo. Not pleasant but it meant my treatment wasn’t delayed. If your white blood cell count is consistently low, maybe you could enquire about having this.

all the best, Susan x

Thanks Susan

Hello Susan and thanks for your advice.  I will find out more from my Macmillan nurse but am wondering if that option hasn’t been offered to me because I am only due to have 4 sessions in all, already half-way.

Best wishes to you. Mary

Hi Susan

Well done on finishing your 12 rounds of Folfox. You must be so pleased to have got through it.

I have to start this regime soon and I wondered how bad it was and if there was anything you found helpful? Any tips welcome!

Many thanks

x

Hi Tiarella

Best I don’t sugar coat it, it’s going to be hard, but there are things that make it bearable.

Keep a note of all your side affects and tell them, no matter how trivial you may think it is. They will tweak your dose so you can cope with it.

I really struggled with constipation then swinging the other way! By then end I’d managed to get it right, but it took me a while! Laxido helped (I’ve probably spelt that wrong!).

I also suffered with mouth and throat problems. They have a gel for that which helped and a mouth wash.

For the sickness I had 3 different tablets, but they make you constipated, see note one  In the end I was taking lorazepam the night before and morning of chemo and that really helped.

The steroids you have to take made me put on weight, not a bad thing and they make you want to eat. I didn’t have any problems with eating throughout, thought I did go off some foods and you have a revolting taste in your mouth for a few days after the chemo which made me crave sweet stuff to get rid of it.

I suffered with peripheral neuropathy and really affected by the cold. Hopefully the weather is getting better and you won’t be so bad.  This is a key side affect and if you get it make sure you tell them. I’ve got problems with my feet, which I’m hoping will subsided now I’ve finished the chemo.

indigestion was another problem but they will give you an anti acid liquid to help with that.

Emotionally I had really bad days, where I didn’t want to get up or talk to any one, but they passed and didn’t last long. Sometimes you just need to wallow and if you do you do. People around you will understand and support you.

The mad thing is, that there definitely seemed to be a sequence that the side affects came out and you had to go through them before you came out the other side. For me it took about a week and then I felt absolutely fine.

I did find it hard and there were days I didn’t want to continue with it, but they kept alternating my dose until I could cope.

I really wish well and if there is anything else you want to know please get in touch.

all the best, Susan xx

Hi Susan

Thanks so much for your prompt reply which is very much appreciated and well done again for getting through it. It sounds tough and it's good to know what to expect. At least it doesn't last for ever!

Thanks again

x

This is a sort of general reply to this part of the forum.  Having read through all that's being said I conclude that everyone of us is different.  I am not sure where the different treatments come from and can only guess that the Oncologists and / or the surgical teams are also unique. Some of the treatments are talking about drugs and top ups that I have never heard of.  Perhaps it also depends on the radiologists report as the consultants always read them to me and they seem to be the only source of data.

Having said all that, the treatments seem to be working for me at least.  I know I cant have surgery but the pills seem to be controlling the wee beasties in my liver, they seem to be shrinking and in myself I feel fit and well.  When I compare myself to others I am well blessed.

So no real words of wisdom or advice really.  I do feel it helps to talk and to share so if there is anyone who is new to this forum, welcome and do please talk to us all.  We may not have all the answers but you may find a gold nugget in there somewhere.

I guess I would always recommend a positive attitude.  Be positive and know that you are not alone.  I have two friends - cancer buddies - and we are all on similar journeys, so we keep in touch and have a laugh. W remind each other that it will be alright in the end.    And if its not alright, then its not the end. 

I do find it amusing that I have neuropathy - numb tingly fingers and feet. I reminds me when I am fiddling with model railway repairs for our local model railway group.  Before the treatment I was quite good at handling small screws and nuts and bolts, but now I have to use a huge magnifying glass and tweezers and small pliers.  Luckily, I don't have the shakes, but sometimes I am holding a small screw and because I cant feel it I am looking everywhere for it.  Its hilarious, and certainly  isn't life threatening.  eBay is a life saver for spares and bits that have gone walkabout ....

I sincerely hope that whoever reads this is encouraged.  Life is different, sure, but its still life.  I celebrated the first birthday of my Great Granddaughter on Sunday.   That really cheered me up and I know I definitely have someone to live for.  I'm looking forward to her tenth birthday, I'll be 90.  WOW, makes me smile to just think about it.  (Memo to self - check out the source of Zimmer frames and electric scooters for that party).....

Take care fellow travellers

God bless, stay safe

John