Cancer support thread 91 - don’t borrow tomorrow’s worries

[LemonDrizzle10]

New thread

Quite a few of us have had paclitaxil and carboplatin @Tilllly as its standard treatment for ovarian and endometrial cancers. It does mean hair loss, cold capping may be an option (I wasn't offered it I had to ask for it), some of us also have worn ice slippers on our feet to try and prevent the peripheral neuropathy (both worked for me!) and you do lose your eyebrows, although gradually, mine started to grow back at one end before they'd completely fallen out the other! Obviously no chemo is nice, but it's not one of the worst combinations. Good luck!

@Tilllly - also just finished Carboplatin and Paclitaxel
I do have the neuropathy- my feet are pretty numb (enough sensation to walk ok though). My hospital weren’t keen on icy gloves and socks being used during chemo - and I suspect, like cold capping, they’d work better if you did it during the infusion.
Otherwise I had tiredness at times, and a week of feeling not myself. But no nausea - which was a relief.

The last appointment I had the nurse spoke about reducing the last dose of chemo in case the neuropathy got worse. I wasn’t keen to do that - so I got the full dose - and indeed my neuropathy has stepped up a gear. My calves are a bit colder, and the pain in my feet can make sleep difficult.

So maybe just be aware. But if I hadn’t had that last full dose of chemo, I think I would regret that more.

Welcome @rhianjayne . Sorry you’re here.
Many people on the thread have breast cancer, and that can make it a little lonely at times (I don’t have breast cancer) but it’s still a fun place to off load.
And cancer brings common problems and emotions. So it’s definitely worth staying here and picking up ideas/ feeling less alone. xx

Thank you @SierraSapphire @RedRosesPinkLilies
That makes sense now

He just said to mention if I got pins and needles - so that's the peripheral neuropathy? Is that permanent then?

I've had a few days away at a spa hotel with friends and defiantly had my eyelashes dyed beforehand. I have lovely long eyelashes...

I think the neuropathy can be permanent or it can wear off eventually @Tilllly. I wonder why your hospital wasn't keen on the ice @RedRosesPinkLilies - I seem to remember somebody saying that the Christie, the specialist cancer hospital in Manchester, actually provided these things for patients. I took my own and there wasn't any encouragement at all, one nurse took an interest and said she'd had some other patients that also brought them, but another told me nobody else ever did it 🤷‍♀️. That discouraged me the first time, but I did start to get some tingles in my feet after the first one, so I iced after all subsequent ones and it didn't develop and I don't have anything now. I didn't do my hands as that just seemed to impractical with the IV in them. Like lots of things there isn't a huge amount of evidence such as randomised control trials because it's not the sort of thing that's going to make any money so it's not massively funded, but there definitely is some evidence that it's safe and it can work.

@Tilllly Dunno if this is any help but I was on a low dose of oxaliplatin, which is quite neurotoxic, for a little more than four months, and the neuropathy has now worn off for me. I didn't do icing etc.

Of course it is a different drug so symptoms wouldn't be the same. I had cold sensitivity (unique to oxaliplatin I think) which involved pins and needles on cold exposure, (with risk also of respiratory distress). I also had neuropathy symptoms like: hands would close up into a sort of claw, with thumb moving closer to palm and being hard to move back without using other hand, had some numbness, tingling and stiffness in the hands, and some weird feelings in my feet/ lower legs like a buzzing and a feeling I was somehow sinking into the floor.

Since coming off oxaliplatin back in mid-June, it's all gradually gone away. Mind you because I was on a low dose from the start my side effects must have been reduced.

My oncs were very keen to know about the neuropathy as it's one of the things they most wanted to manage since yes it can be long lasting or even permanent with my drug and I assume others. So I guess it is helpful to let them know about any symptoms like pins and needles/numbness etc so they can see how it's affecting you.

Thanks @LuciaPillson

And I find this so helpful, to actually get experiences from people who have been where I am going, rather than just randomly googling stuff, which I assume would be terrifying

@Tilllly I had 6 cycles of Carboplatin and Paclitaxel for ovarian cancer. I was told there is a 10% chance of the peripheral neuropathy being permanent. I had some numbness in my fingertips and feet, plus the end of my nose. For me, I'm in that 10% but it's not as bad as it was when I was on active treatment if that makes sense. The numbness has reduced and then stayed the same and my last dose was 2 and a half years ago. I'm used to it now but my current drug makes my nose run and I don't feel it so often it just splashes out. You mention being worried about your nails, mine were if anything better than they were beforehand which was very strange.

@rhianjayne welcome to our lovely thread with the nicest people, so sorry you find yourself here.

@Fantasea I swear my fingernails are stronger than pre-chemo. I agree, so strange!

@Octopus45

Thinking of you. Hope the surgery has gone well.

Hello everyone and welcome and solidarity to anyone new. It's my first time posting on the new thread - I was on holiday last week and trying not to think about cancer. And I find you already on p.11, things move fast. Sending strength to everyone facing bad news, uncertainty or just the relentlessness of it all.

I had relatively good news today in that I had my regular monthly blood test and oncology appointment for my abemaciclib treatment (follow up drug for high risk breast cancer, which aims to reduce the risk of recurrence). I've done a few months now and my bloods continue to be OK, so I can go down to three monthly check ups, which will be great. My veins are shot post-chemo and the blood tests are always an ordeal.

Anyone had eyesight problems post-chemo or on hormone treatment? I had my eyes tested in May, 3 months after finishing chemo, and got new varifocals as my reading prescription had changed. But over the last few weeks I noticed I wasn't seeing very well when driving. I got them tested again today and my prescription for distance has gone up by .5 in both eyes. Googling suggests chemo effects should be transitory, and hormone treatment might make cataracts etc more likely, but the optician said the lenses looked healthy, so it's not that. Could be a coincidence, but seems weird in just six months, since my distance vision has been either stable or slightly improving for a couple of decades now.

@dotty2

I am absolutely no expert, but I have had a lot of issues with my eyes, and if you are in your 40s and 50s, this could be just a natural change.

I had the opposite experience with eyes and chemo. I was getting oddly short sighted during Lockdown as I was working from a screen all day. Once I was invalided out my eyesight returned to normal or better. I can see two lines better than 20/20 vision now. I think it was stopping work on screens mostly.

I had to wear reading glasses temporarily during chemo, but I'm okay again now, but I'm not on anything else so I don't know about that.

I went to the hospital this afternoon for my three monthly check of my "shrivelled vagina" (thanks DD!) and I was promised a female doctor by letter and by telephone and when I got there, there was no female doctor, even though I could read upside down and from the other side of the desk that it very clearly said female doctor only next to my name, I was right at the end of the schedule and nobody had bothered to let me know. The admin woman was lovely, but a nurse there held her hands up at me and just backed away and said "its nothing to do with me" even though all I've done was ask a question and a perfectly normal voice! I wish I'd said something to her now. The male doctor was running over an hour late, and I didn't see any point in staying because I've had no issues, so the admin woman said she'll get someone to call me next week to rebook. Not as bad as the first time I turned up for chemo and they told me they'd got the wrong week (again I'd been told by phone and letter!) and I needed to come back the week after. Anyway, I went into town and bought some boots, so the journey wasn't wasted!

Hi ladies, I'll catch up on the thread properly tomorrow, but just wanted to share that my surgery is over and I'm home. Feeling a bit sore and woozy but I'm ok.

@Octopus45 glad you're through that part. Sending strength.

@Octopus45 hope you manage to get some sleep and that you’re being well looked after at home.

@SierraSapphire Please describe boots! 😁

@LuciaPillson

@SierraSapphire those boots are a great reward for your wasted trip.

@MrsTaytodarling and @Lavenderosemary are you still in the Waiting room of Doom or have you got some more information? Thinking of you both

@Octopus45 well done! Now take it easy and don’t rush to do things. It’s so hard to rest and do nothing but at this point necessary!

All well at Tops Towers. I am the Queen of sleeping I had 12 hours last night! Blisters slowly settling but energy still rock bottom.
love and strength to all
Top xx

@SierraSapphire Oh nice. I would stomp through so many puddles in those.

Excellent boots, but that’s terrible about the dr, @SierraSapphire

Glad you are home @Octopus45

@LuciaPillson I also had Oxaliplatin for 4 months and your description of the claw hands is so accurate!

@Tilllly I have peripheral neuropathy following chemo and am now having acupuncture on my hands and feet which is definitely helping with my recovery. It can take up to a year to resolve and in some people can be permanent.

@SierraSapphire I am sorry about your wasted journey, despite the lovely boots.

@Octopus45 glad you are home. Rest up.

@Remaker Ooh you know about the little T-rex hands! I kept describing them to doctors and getting blank looks. 🦖🤏

@LuciaPillson my hands were really bad after my first infusion. My mouth was also affected and kept going into a cats bum shape LOL. I also developed some scary Darth Vader breathing even without drinking anything cold so for subsequent infusions my oncologist reduced the dose to 75% which didn’t give me the full T rex, but I still had the wandering thumb.