First cycle of chemo fears - help needed

Oh Mel, what a worry to be carrying! I know when I had my first round of chemo I was absolutely wiped out ane felt very rough indeed for the first week - but a change in medication made a huge difference, so do speak to your team and see if there’s anything they can do to help with the side effects. 

The worry about Ca125 levels is very familiar indeed - I still ask about mine every time I go in for my Avastin treatment and worry that it’s going to start going up again. 

mid and when that happens, for you or for me, that doesn’t have to mean the end of treatment. It just means a change of plan, and they will try a different drug or regimen. 

i really hope it al goes well for you, that the chemo absolutely works, and everything goes according to plan. 

Hi Mel, so sorry to hear that you're feeling so bad.  I'm stage IV too and finished 8 cycles of chemo last august.  I do remember that the first ones particularly were rough, and I suffered terribly with constipation - in fact i'd say that getting my bowels under control was the biggest struggle!  Movicol was my saviour and the chemo centre may be able to provide you with this.  I did find that no two cycles were the same, and just when I thought I had it sorted and prepared with the Movicol, things went the other way and I ended up with chronic diarrhoea!  Anyway, enough about my bowels, although my experience is that I spent an inordinate amount of time talking about my bowels with complete strangers - just one of my many new experiences over the past year! 

I know it's hard, but you can't know how the chemo is working yet - remember this is powerful stuff and often the effects of the treatment feel as bad as the issues it is resolving.  I also became very sensitive to heartburn and indigestion, but the chemo worked extremely well on me. reducing all my tumours even before surgery - i am now in remission.  So try to be reassured by that, and try to take it one step at a time - look after yourself and particularly your digestive system.  You probably want to avoid spicy foods, heavy meals or anything that might upset it.  I developed a taste for chocolate ice cream, hot chocolate and other soothing inoffensive foods that settled my stomach and didn't taste odd due to the chemo!

Do chat with the nurses who will help you manage your symptoms - chemo is a rough ride, but the doctors won't put you on it unless they feel you're likely to respond, so trust in them. They will be monitoring you.  Try not to look too far ahead at this point - the 'what if's' will drive you crazy.  

I'm still obsessed with my CA125, but remember that this is just one indicator and as RainbowCB says, there is a raft of treatments out there if they do find that you're not responding quickly to the chemo you're on. 

Take care and Good luck xx

Hi Rainbow CB and Riki123, thank you both so much for your kind and thoughtful replies.  I had good news from the CA125 after the first round and it's dropped by 50%, so I'm really pleased that the chemo is working.  3rd day in on my second round and constipation seems to be in control with laxatives but i know what you mean about talking to complete strangers about bowel movements!  I'm now working on taking things one day at a time, and managing my response to the symptoms i'm having which i now know is the effects from the chemo and not the cancer advancing.

i'm now struggling with hair loss which is rapid.  do you have any tips on how to deal with it and management of scalp etc?   i'm thinking of shaving it all off now as it's coming out rapidly.. did you guys do this?  i've booked in to a wigmaker on Monday to see what scarves/head coverings they have.  what did you guys find worked best for you?

Sorry Riki123 one more question - you say you did 8 rounds of chemo, where did the surgery fit into that?

Hi Melo99 

glad to hear things are moving in the right direction. Definitely one step at a time to keep the crazy fears under control.  I was supposed to have 3 cycles chemo / surgery / 3 more cycles (I think) but due to Covid they cancelled all surgeries (this was early last year), so I had 6 cycles, then surgery in July , then 2 more cycles.  I don’t think it really made any difference and in fact by the time I had surgery the chemo had done it’s stuff and I had no visible traces of tumour so it was pretty straightforward. 

re the hair loss - yes that’s tough.  I actually cold capped so lost probably 2/3 of the thickness but kept a reasonable head, although I bobbed it early on, and then with no hairdressers it became a bit of a mess anyway. I then took it shorter when the new growth started coming through (to try and match old &new), and right now it’s a huge cropped mess which I hate as I’m used to shoulder length.  Although it is now back to thickness.  So in retrospect I think I would probably not do the cap again and just go with cropped/bald,  The cold cap adds an hour or so to the treatment, and they’re long enough already!  Anyway, sounds like that’s not an option for you now anyway. Plus I was more disturbed by losing my eyebrows and eyelashes !  False lashes were great, and a good eyebrow pencil! 

i did treat myself to a wig (did you get the NHS voucher?). Which I loved - made me look more like ‘me’, and I actually wore it in my wedding day in November!  So yes, go for it - it will do wonders for your morale.  Although you probably won’t want to wear it all the time, so a few scarfs/hats etc will be good - especially coming into summer with the sun - your scalp will need protecting. I found YouTube was good for ideas and tutorials on how to tie scarfs etc

good luck and let us know how you get on x

My brother in law warned me about the sensitive scalp and hair loss starting after chemo 2, so that was helpful and it meant that when it started coming out I took the decision to shave it off (well, clippers down to 1/4”). I did get a wig but only wore it once. The rest of the time I either went bald or used head scarves since I had a couple of nice scarves which were suitable already. 
such good news that your CA125 is coming down - it makes it feel more worthwhile for sure! Are you having to use the utterly foul laxido powders? We still have packs of them in the cupboard as I ended up only using them when I really had to! Grim! 

Hi Melo99,

I'm really glad the chemo is working and your CA125 is dropping- that's so encouraging. I thought I'd pop on and answer your question about hair loss. I had long hair which I decided to have cut into a bob before it fell out so it would be less traumatic, but I still found it really hard! When it started falling out in clumps after about my second chemo, I got my hairdresser to shave it all off. I used my NHS voucher to get an amazing bob style wig in a lovely reddish colour, which was amazing and made me feel so confident whenever I went out. ( I did try a long, glamorous one on first but I looked like a footballer's wife!) I also bought some wig liners on the internet called Headliners, which you stick inside the wig and they made it much more comfortable. (They last quite a while and then you peel off and replace them. The wig was so easy to wash and it dried beautifully! They give you special wig shampoo!

I also ordered quite a few beanie hats for hair loss on the internet, which I wore around the house- I really found it soft and cosy to wear them at night because my head got quite chilly in bed. I never tried scarves because they made me feel too much like a cancer patient, but it's such a personal thing- I also never wanted to go bald out and about but I really admire women who do!

It was a shock when I first looked in the mirror as a bald person, after having long hair all my life- my brain couldn't understand what it was seeing! But it does grow back after chemo, (mine came back grey as I expected because I was already colouring it at 40 so I waited a while and then went back to having it coloured. It's now back to being long and curly! So there are lots of options for hair coverings- I recommend trying a few different wigs on- it's a chance to try a new look! Hope you had a good appointment today and hope things keep going in the right direction xx

Hi

Google Cancer Hair Care it's a charity currently running online sessions with great advice. Also look good feel better which has online advice about makeup- very helpful if you lose brows and lashes.  Both sent me parcels of freebies after consultation- something to look forward to during treatment. 

Chemotherapy isn't great but it is bearable just visualise it doing it's job and try to stay positive  - not easy I know but if you can laugh over bowel movements your on the right lines! I know exactly what you're going through. 

Its 5 weeks since I completed treatment and already feeling much better.  There is light at the end of the tunnel. X

Hi everyone, I am now a week away from my third cycle and I must say that I am feeling pretty awful.  Much worse than before I started treatment / I’ve just become so tired and  it hurts where my tumours are and I’ve had bad bloating / distension and pain after I eat.  I’m trying to remain positive that the treatment is continuing to work but it’s tough xx

Hi Melo, sorry to hear you are feeling poorly, it’s horrible feeling ill, not knowing what’s happening, someone said to me if you are feeling ill, it means the chemo is working, I had a ct scan after my 3rd chemo , so hopefully your doctor will arrange the same for you .  Really hope you turn a corner soon and feel better ,

take care

love