Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

Does anyone know what your Neutrophils have to drop to for your chemo to be cancelled?

I don't know totheleft and it may vary by person, maybe call your chemo line and ask so you can know in advance. Mine were always normal but I had a couple of breaks in chemo due to neuropathy. Its a pain as it lengthens the end date but it can be nice to have a week off with less symptoms and chance to have a day out or two outside.

I think most of the chemo now is classed as 3rd generation, all ones I was offered they said were 3rd gen. I know every detail of that Predict Breast model. 😂The one I like most is when I asked what does benefit actually mean and they said staying alive and not being dead.

The chemo feels like it will never end but it does, when you cross the half way mark it helps a bit as you have done more than you will have to do. But I really hope I never have to do it again. Surgery and radio and hormone tablets fine, well not fine but OK. Though the surgery in the private hospital paid by the nhs was like being in a nice hotel with excellent food, if only I hadn't given up my job with private medical insurance.

Hope you’re ok @catmomof3
@EachandEveryone hows the keg? Re hospice- our local one delivers lymphodema care, and pain management advice/ support for anyone struggling- not just end of life care.
A doctor at our local one regularly talks at the local bc group and sees members individually regarding chemo/ drug side effects etc. she’s amazing.

Also just checking in on you @EachandEveryone Sounds like your local hospice could be of help ?

I’ve got an appointment with oncology on Wednesday pre Fridays chemo and will ask then. The swelling is just as bad but dare I say, the pain is not as bad today but it’s very uncomfortable I can barely sit on the loo

@tothelefttotheleft I think the safe minimum for neutrophils is around 1.0
Below that you would be at risk of sepsis.
Hope you are coping okay. Just keep going!

All well at Tops Towers. We are having a week of fixing up house and garden before going off on separate adventures. I am so happy to be able bodied and doing nice normal things like going to yoga and having coffee and cake with DH. Life is sweet!
I sorted out my clothes today and got rid of some I will never slim into, also some work stuff I don’t need any more.
If anybody wants some Anna bandana style head gear I will post it if you DM me.

@TopOfTheCliff
@Penguinsa

My Neutrophils were .9 yesterday. My chemo this week has been stopped.

I've been doing chemo since January. Felt ok until Sunday. They were going to test for sepsis at pre chemo yesterday but once I said my iron was 85 last week they decided it was that making me feel poorly and didn't test.

@tothelefttotheleft

The 'stronger' chemos are the ones that tend to cause low neutrophils at the levels where they hold treatment, stuff like for example Epirubicin and Cyclophosphamide (EC chemo). When I was on those they gave me Filgrastim injections to get my bone marrow to make neutrophils to prevent neutropenic sepsis. On the less crazy-aggressive chemos like Paclitaxel and Abraxane, neutrophils aren't suppressed to the same extent so they don't give Filgrastim and people generally don't get such low levels of wbc.

I had neutropenia like you once, and my treatment was delayed too. I had 0.6 but it was a left over effect from EC chemo (it was week 2 of Paclitaxel that was held for me, the chemo I started after EC chemo finished). My level was sufficient a week later. I hope yours is too.

@SummerCycling

I got it wrong my levels were .8.

I started with four cycles of EC. I’m now doing weekly Pax and every three weeks Pax and Carbo. I’m having five cycles of that and I’m one week into cycle four so have had both Pax and Carbo this week.

@tothelefttotheleft

So we were on the same chemo for the first 4 cycles then! But then our treatment was a bit different: instead of Carbo every 3 weeks with the weekly Pax, I had Phesgo (two targeted therapies) every 3 weeks with Pax. Pax and Carbo could well be tougher than what I was on: I found chemo much worse than the particular targeted therapies they gave me (for a year). They were no joke, quite a lot of side effects, but chemo was off the planet awful.

Plus of course some of us are more sensitive to the treatments. They told me my low neutrophil level was a surprise at that point. But I couldn't tell - without the blood results I wouldn't have known - and the level was sufficient the following week, so just a temporary blip - I hope yours is ok next week too.

You have nearly got to the end of neoadjuvant chemo then, with one more cycle of both left?

Do you have triple neg BC? Mine is/was Her2+++ grade 3 stage 3, hormone neg. My treatment plan lasted just under one and a half years up to near the end of 2023. What's up next for you? x

Hi @demivolte Yes thanks, doing ok all things considered! Still finding out what 'new normal' is but managing to get to the sports club a few times a week and enjoying meeting up with friends etc, so certainly some nice things mixed in with side effects and fear of recurrence.

How are you getting on - are you at number 8 of Phesgo now, or maybe even further along? Is your LVEF holding up? there was someone here who had to put Phesgo on hold due to cardiac issues, which I know are not uncommon on that medication, although I don't think it was you (sorry, my memory was destroyed by chemo and all the toxic cancer stuff).

@SummerCycling

Yes I have triple negative. Stage one grade 3.

I had a lumpectomy in November. Chemo was due to end first week of July. Then radiotherapy. Oncologist told me last week i also have to have some infusion treatment for my bones cos of the chemical menopause and chance of recurrence. That's over five years.

Really appreciate your replies and support. Feel quite low with things at the moment.

.

Posted too soon above by mistake

@tothelefttotheleft

I'm sorry to hear you're feeling low with things at the moment. It's really, really tough: going through months on all these different chemotherapies is so harsh. You are doing very well though actually - I stopped chemo early because I couldn't cope with the side effects any more. You have completed more than I did, and believe me, I know you will have suffered to get there. xxx

So you've already had surgery, that's good. Chemo was first for me, then surgery after that.

I had 3 weeks radiotherapy over 15 days, and each treatment day was 20 minutes zapping time. It was massively easier than chemo, not even 1% as bad. I hope you find that too. Do you know how long it will be yet? At stage 1, you might not need 20 minutes zapping time - I think they might zap fewer areas than they did on me.

I am also on that bone infusion although I think they said 3.5 years for me rather than 5. I've had it 3 times now and found it no problem. Some people get a bit fluey for a couple of days, and I think some people can get achey joints. I personally found Filgrastim a billion times worse than the bone infusion (I'm on Zometa aka zoledronic acid).

xxx

Sorry you are feeling low Tothelefttotheleft very understandable chemo is very difficult and the weekly Pax has more steroids than normal which don't help. It'd be worth mentioning to oncologist to see if they can alter anything - I was put on very reduced steroids at this point which helped and also my oncologist reckoned the last chemos are marginal in terms of benefits so if you find it too much can discuss stopping early. I did all mine but oncologist and I had agreed on a shorter 4 cycle regime to start with due to SN child etc at home and she felt the success rate would only be marginally lower and bearing in mind the side effects and home things thought 4 cycles the better option. It will obviously vary case by case - all my cancer was removed that they could see with the 2 surgeries so it was preventative chemo or to get the cells they couldn't see. You can also take breaks if that helps, I had 3 weeks of breaks on Pax due to neuropathy and poor mental health / GCSEs and SN child school stress. And I went away in one of them to see puffins in Skomer which gave me the strength to get through rest of it. Radio was a breeze in comparison, 10 mins of lying on a bed with a machine whirring round me and zero side effects for me, well felt slightly sick but was so easy after chemo. The nurses told me that for almost everyone chemo is the toughest treatment by a long way. I can still feel it in half my face permanently nearly 2 years on all the time. Its like being run over by a bus but it does end and everything after that is easier. But the length of treatment is quite depressing, I have 10 years of stuff but that chemo is by far the worst part and generally life is fine now.

@Penguinsa

Thankyou for replying.

The steroids are brutal. My face has changed massively. I have swollen bags under my eyes and a massive face. I don't usually care how I look but I don't recognise this person I see in the mirror.

On the steroids u usually only get 4 hours sleep. They make me almost manic. It's like having the accelerator pressed down all the time.

I was fine until Sunday. I was walking every day and my physical symptoms were practically non existent. Then I couldn't even sit at a table to eat and celebrate my youngests birthday. I kept having to lay down. Was seeing stars and my legs went from under me at times. I can't stand to wash up or vacuum without it being a massive struggle. I'm only ok now if I'm laying down.

I don't understand what's going on. My low neutrophils don't explain this.

@tothelefttotheleft

I'd tell your team what you just said in your last post. One common side effect of steroids is "moon face" which sounds similar to what you're describing. Steroids can also cause mania and insomnia.

Do you have a chemo hotline or way of contacting the team? It sounds to me like it could be your body has reached its tolerance of steroids and you are now experiencing these extremely unpleasant side effects.

I would speak to your team about it. Good luck x

I would contact your chemo line about the steroids and see if you can get them reduced. I found as I went on the steroid effects got worse and worse each cycle and I was so ill on them and got moon face as well. Mine were reduced to just the one pre chemo and none after and that did help, not with the face but with the symptoms. And tell them about your other symptoms. I did feel ill like that at times with the Pax but its always best to check. I found eating little and often helped and drinking plenty but you may need more help or a reduced dose or even stopping a bit early as you have done an awful lot already, see what oncologist thinks best.

Hello folks, wedding went well, lovely quiet and chilled day. Been away for a few nights in the motorhome parked by the beach which was lovely. To be at hospital for 8am tomorrow for a double nephrostomy (sp), so dreading that. Leg has pretty much screwed up walking so although had a lovely few days my leg was too uncomfortable for walking any distance. Mortified that I’m going to buy a mobility scooter but needs must.

Hi All,

Haven't followed the thread in a few days (which I will at some point). Just here to update that DIEP surgery went well, and I am home now recovering.

Please feel free to message me if you have any questions re: neoadjuvant therapy (docetaxel/carboplatin/herceptin & perjeta).

P.s. anaesthesia was THE BEST THING about the surgery, overall experience better than chemo & sepsis thus far

Glad you had a lovely wedding Whatever and all the best for the operation.

Well done Meso on the diep.

Saw consultant yesterday and i have Oromorph for the pain and its vile! I havent slept a wink!

@EachandEveryone oh no.. is there anything else they can offer you?

I think I need to persevere I was really expecting it to knock me out but it’s had the opposite effect

Oof- been in hospital since 8am - double nephrostomy didn’t happen as was WAY to painful, even with sedation. Off home again!!!