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Bowel cancer treatment and side effects

helena

Almost half way there!

My chemo session on Wednesday is number 6 out of 12 of Folfiri with added Zaltrap and whilst I am delighted that I am about to go over the halfway hump I have also become terribly anxious about the halfway scan due on the 18th February.I have had a lot of side effects with this regime including raised blood pressure, headaches and continual nose bleeds. I am now on blood pressure tablets and am going to talk to my oncologist again tomorrow but I do wonder if these side effects are par for the course? Any advice would be most welcome and I also would appreciate any hints about overcoming the fear for my upcoming scan? Feel down inside I just wish they wouldn't scan me as I would rather chug on with the chemo for the full 12 cycles because if it's not working then goodness knows what other options are open to me? I can't have oxylaplatine due to a previous allergic reaction and I'm not suitable for Ceruximab. My oncologist says 'we will cross that bridge when we come to it' but he never fills me with positivity and now I find I'm becoming overwhelmed my negativity (mostly of my own doing) How do others cope with these feelings? I could do with an infusion of positivity on Wednesday rather than Folfiri πŸ˜• :x::x:

Gypsy

God Bless @helena. Thinking of you, as always. I have heard it said that if you get bad side effects, just think what it's doing to the cancer. I believe it's working in you. All my love :x::x::x::x::x:

scruffysheep

My Wednesday cycle will be 9 of 12 of Folfiri,( not heard of Zaltrap ) I had a scan after 6 and felt exactly as you do. Apparently I was "hell to live with" for the 2 weeks between scan and seeing the consultant πŸ™„ I wonder whyπŸ™„.
Thankfully my mets had stayed the same, no shrinkage but considering how they had appeared in the 12 weeks between me ending Folfox and the PET scan that was very positive. I've got another scan on April1st after cycle 12 and if it still appears to be working I'll carry on with it till it stops.
I asked what the alternatives were if / when it does stop and the oncologist mentioned 3 other things but the only one I can remember was lonsurf. I'm not suitable for Cetuximab either. I can't have Oxy again as I've got quite bad neuropathy from the last lot though I didn't have any other side effects either it.
Does your hospital have a Macmillan councillor/ social worker? My chemo nurse arranfor me to see one last July and whilst I don't have regular appointments she is always at the end of the phone if I do need to let off steam and has been brilliant sorting out any issues I've had.

Valerie :x::x::x:

helena

Thanks so much @ Gypsy for your re-assuring words ❀❀
Thanks @scruffysheep for sharing your experience too - we seem to be in a similar position and I will certainly ask about a MacMillan nurse as I think that would be helpful, certainly from the emotional side of things as I do seem to be struggling. When well meaning friends and family ask me how I am I always reply 'fine thanks' but recently when anybody asks I have an overwhelming urge to cry and that is just not like me, my stiff upper lip and good old stoicism had upped and left the building. Maybe talking to a MacMillan Nurse would help?
I see you are having 12 cycles of Folfiri too and you're on cycle 9 and you said that if the scan results on 1st April are good then you'll continue on it until it stops working - does that mean that after cycle 12 then you may be on it indefinitely? My oncologist has never mentioned that to me, and if we're in similar situations then there's the chance that I may be on it indefinitely too?? I had it in my mind that I would be finished after round 12 and then left to my own devices. Sorry but I'm thinking out loud here and possibly overthinking.
I really really appreciate your reply, thank you 😍 :x::x::x::x:

helena

Hello again @scruffysheep - I've been having a read of your bio and I'm sorry to read that you had problems with your first Picc line and I hope that the new one is behaving better? This must have been quite traumatic for you and i hope its all sorted now.Big hugs, H :x::x::x:

scruffysheep

@helena , yes I asked what would happen after 12 and he said I would just carry on as long as it worked and my body coped with it. They would scan every 3 months to keep a check on what was happening.
The new picc seems to be ok but my GP is away for 6 weeks and the others in the surgery are being difficult about prescribing the Fragmin injections the hospital say I need as I don't have it all in writing from the oncologis. I'll speak to the staff in the chemo unit on Wednesday to see if they can get something on paper for me.

helena

@scruffysheep - I'm not very good with medical terminology (yet) and I wonder what Fragmin is for? It's a bit strange how sometimes the GPs and the Oncologists don't seem to be in joined up writing, I encountered the same when my GP prescribed pills for high blood pressure and the oncologist had no record of this so he couldn't check the dosage - I would have thought that all their computers would be linked but this doesn't appear to be the case? All the best for Wednesday.Big hugs, H :x::x::x:

DianeS

Hi @helena well done for reaching the half way mark. Just wanted to wish you lots of luck for your scan. I really don't think scan time gets any easier. Im OK with the scans but really don't cope well getting the results, walking into my oncologists room always makes my hyperventilate. I feel so stupid but I really lose the plot. We will all be thinking of you on 18th love Diane :x::x:

scruffysheep

@helena The Fragmin is a blood thinner, I need to take it or a tablet alternative to prevent any more blood clots. The oncologist said as I'll need it for at least 6 month or long as I'm on chemo. Thanks for the good wishes, I wish you the same :x::x:
Valerie :x::x:

helena

Thank you @DianeS - the 'fear'doesn't get any easier with scans, does it? My coping mechanisms seem to fail me now so I am going to have to find alternative strategies. Thanks for your good wishes for the 18th ☺ @scruffysheep - ah, I see - it's a blood thinner. All the best for Wednesday πŸ‘ :x::x::x::x::x:

mem

Happy half way @helena! Gosh, that has gone quick (or has it?). Sending a huge half way hug your way lovely lady πŸ’ͺ🏼😘 :x::x::x:

helena

Thank you so much @mem and I'm sending one right back to you too πŸ’– :x::x::x:

mem

Thankyou too @helena 😘 :x::x::x:

Chelts

Never heard of Zaltrap so looked it up. Sounds quite scary, particularly the side affects!!
www.zaltrap.com/

helena

Gosh @Chelts - I had a quick look and it's terrifying! I had been cautioned about a few side effects but I didn't read the leaflet they gave me as I'm quite suggestible and start imagining various symptoms. I seem to have developed most of the ones connected to Zaltrap!!! I saw my onc today and he wants me to have one more round of the present concoction, scan and then decide on the 27th Feb whether to "tweak my regime"........ I hope and pray I don't develop any of the more serious side effects by then. Thank you for researching this Chelts and I'm off to read it again in more detail. Ooooft! :x::x::x::x:

helena

Oh my goodness - I've read them all and I've definateky got the bleeding, the high blood pressure, the headaches, the protein in urine and I've also got the hoarseness of voice. I guess I have to trust my oncologist - I've reported all these things to him (apart from the voice) . :x::x::x: