I’ve felt this, it makes me wonder whether things like sepsis or emergency admissions are monitored for their targets. They seem very keen to not treat! I think I’ve said this here before but when my liver ALT values went up (above normal but not to a level that would prevent chemo being given) the doctor said they might permanently discontinue my immunotherapy in case that’s what caused it. Turned out to be a combination of too much activity, dehydration, returning to eating after trying to eat minimally and keep a narrow eating window while waiting for treatment and too much cheese! That seemed like such a knee jerk reaction which could have significantly affected my prognosis and has really knocked my faith in being treated as aggressively as I think is necessary in my situation. Did you say you’re also triple negative but were very early? If not, did you get an oncotype score after surgery? It looks like for my chemo to be considered to have the best outcome I need 85% of the full course which I’m hoping I’ll have just about received but not sure if that’s the same for everyone.
No I didn’t get an oncotype score. Don’t really understand it all . Bit worried about all of this but scared of doing any more research and going down wormhole and making myself panic. What do you mean by 85% of full course? I started to wish I hadn’t mentioned anything about cough, but also worried about ending up in hospital if my immune system couldn’t fight infection.
Ah, just checked and oncotype scores are used for people with hormone receptive BC , now I remember checking this before, so that’s why I didn’t get it. Maybe. Actually just don’t really understand any of it. But they didn’t give me one, no idea if I need one.
Oncotype predicts risk of recurrence but triple negative doesn’t get one for some reason. The treatment I’m having is the keynote 522 protocol for stage 2-3 tnbc, I think you said yours was very early so it sounds like yours wasn’t bad enough to need the chemo first as you caught it super early. It’s difficult to know what to do for the best in terms of reporting symptoms and sepsis is scary! I phoned up for a cold sore as it was big and getting bigger fast but they didn’t seem especially interested in that and I had to push for them to take the DVT seriously.
I’ve felt I had to be honest with the dentist this time as my eyebrows and lashes have fallen out and I was already advised last time to have the wisdom tooth removed so will look weird if I go again and still only want it patched up temporarily… ironically the patient next to me yesterday was talking about going to the dentist and the nurse just told him to try to book it as close as possible to the day before the next infusion to have the maximum time to recover but didn’t seem like it was a super big deal! Hopefully your risk of recurrence is really low and the chemo is more of a precaution, have you had all the EC yet?
The good thing is that if you’re due for treatment your immune system should have recovered from the last round. I read yesterday that I needed to receive 85% of the treatment to have the same likely outcome as receiving the full dose and full number of treatments - I had one T treatment skipped due to neutropenia (I begged to have a few more days and check bloods again or put that treatment in at the end but they were adamant - this is partly why I’m cross to have had 7 days worth of delays just due to scheduling issues, they told me it was more important to stay on schedule than have that missed weeks treatment), I had the full dose for all the Ts and the first EC then 20% dose reduction for the second and third with the same planed for the last. 11/12 Ts and 3 dose reductions will mean I get 88% of the treatment but I’ll be under 85% if the last treatment gets skipped and I’ve had quite a few delays too so don’t think I can afford to miss it (and they don’t want to do any more imaging so I don’t know how much progress I’ve had since the last scan). I totally understand you calling to report a productive cough, it’s just a shame that it’s caused so much trouble! At least your primary tumour has already been incinerated in the clinical waste! Are you having radiation? Do you feel recovered from surgery?
@zebramoon every so often I get in a panic about whether my treatment is right , and I think I’ve now decided to just stop doing this ( easier said than done I guess…), and just trust the oncology team to get on with it. This treatment pause has caused me to get anxious again, but I think I need to remember it’s a pause, not a delay. A delay in starting treatment is worse, and as you say hopefully all my bad stuff went in the incinerator post surgery.
Thanks for explaining about the 85% thing. I hadn’t realised that some of your treatments had been skipped, but it does sound like they were very worried about the neutropenic effects. We want to nuke the bad cells but not to the point of putting our lives in danger,and I’m sure they weigh all this up very seriously. Have you been able to discuss this properly face to face with consultant? To my (amateur) mind it seems like reductions in dose make sense if your body is struggling to cope, but feels like that last one shouldn’t be skipped entirely? (Not sure if I’ve understood this right?)But then maybe they’d rather skip and go straight to surgery to cut it out rather than delay surgery?
I’ve had only 2 out of 3 EC infusions (supposedly to be 3 weekly , but now this is a 5 and a half week pause) , then I’ll have 3 Docetaxel. Then I’ll have radiotherapy.
Now I reckon I’m not going into any public enclosed space apart from hospital until it’s all over to avoid this happening again!!
Hope you’re doing ok. It’s interesting for me to hear that you are going from 2 EC onto your 3 doxe-after my very bad reaction to round 1 of EC my Dr is already suggesting we may drop my third round of EC & I was already worrying about the implications of that but seems it’s quite a possible path? I have round 2 on Monday & hoping a 20% reduction makes it a bit more bearable. (Also already had my mastectomy & full mode clearance) x
Ah no, I am not skipping my third EC, it’s just very delayed due to chest infection pause, I will have it next Thursday if all goes to latest plan.Hope the reduction will make it more manageable for you. It’s v hard comparing treatment plans, and also explaining them to each other, isn’t it?! There seems to as many differences as there are similarities…..
Good that you’ve already had surgery though, as that may mean missing a round is less of an issue?
Hope all goes well on Monday xx
Ah sorry for misunderstanding. I really hope you feel better soon-chest infections can hang around way past their welcome. Hope you get number 3 done this coming week too so we can get another way ticked off x
Don’t apologise, don’t think I explained it well! Struggling to understand it myself as it’s changed so much, just realised it’s not next week, its week after, Tuesday, its been rescheduled for!! 13th of the month, lucky I’m not superstitious!! I’m feeling a lot better every day, thanks, so will be ready for it for sure!!
Not had any contact with my oncologist since the initial appointment, I was supposed to have a phone consultation with her but it was a different consultant on the day - he was nice and was happy to prescribe extra anti sickness meds but when I discussed it with ai afterwards it turns out they clash with my pre existing meds, I brought that up with one of the doctors and they said I couldn’t have them but didn’t substitute anything else! I hadn’t thought of it in terms of delay vs pause, I felt mine took a while to start and I had to keep pushing. Some of that seemed to be because I wanted to have the induction appointment by phone not go in person but it’s over an hour away and I wasn’t bothered about seeing the actual ward I just wanted the minimal disruption for dad, but also I had to really push to get the echo done and the lump was getting visibly worse while waiting. I think your treatment sounds absolutely fine and proportionate to catching it so early, tnbc is very aggressive so it’s unusual to find it that early which may mean you feel that your treatment isn’t usual but it’s still very cautious compared to if you’d had such a small hormone positive tumour.
There’s been no suggestion of skipping my final infusion but that’s why I wasn’t keen on mentioning the dental issue until I’d received it! There’s been no toothache was much much worse before I had the fillings a few months ago and the fillings fixed it so I think it was more to do with something being exposed than an infection.
On the positive side I’ve read about people having less treatment than I’ve already had and still getting a good result from the pathology report after surgery saying that all the cancer cells were dead so I’m really hoping and praying I’ll have enough and no more chemo afterwards.
Funnily enough I feel less anxious if I read a lot and know what to expect and what to ask the doctors about, I’d be very nervous just going through the process but I think most people seem to find reading about it stressful.
Oh dear, that’s worrying that they prescribed the wrong anti sickness meds, so well done for checking. I can see your caution now re dentist, in case that affected last treatment. Seems like you’re on the home run now, though, so really hope the pain is manageable til then.
How long after treatment has finished will you have surgery? I cant really give advice re recovery from surgery, as I only had a lumpectomy, but i remember the surgeon being adamant that I shouldnt drive until i felt i could safely perfrom an emergency stop. I think that is a requirement of car insurance. I used a cushion between seat belt and chest, didnt feel i needed the expensive harness thing from amazon. Also it may depend which side surgery is. Mine was right, so seat belt didnt lie right over it, but might be harder if its left side.
Thanks for your reassurance re my worries over treatment. You’re right we are different in our need fro info. Thinking and reading too much does make me anxious, but at the same time I wouldn’t want to know nothing, either. for me it about gettign the balance right! xx
Hi
I have only been on Docetaxel ( originally in conjunction with Caroboplatin) and have to do 7 days of the Filstagrim injections. Hate them . I feel so rough from day 5 onwards and especially Day 8 seems to be the real pits. Tbh I never really get an upcycle. The only day I feel well is the the day immediately following treatment!
7 days of doing it is just horrible!! I guess it may well be same for me on Docetaxel too then. I hate them so much too. How many more cycles do you have to get through now? Has there been any improvement in your side effects at all? Wishing you well x
I have 3 more cycles then lumpectomy and possibly radiotherapy followed by hormone treatment.
To be honest I feel pretty awful the whole time. Very shaky . Don’t do anything apart from going to my appointments. Can’t say I’m really ill but just not well. I have about 5 days when on the Filstagrim when I basically don’t really eat, lose weight big time then pack it on again afterwards. Dropping the carboplatin helped I think. The only day I feel halfway normal is the day immediately following treatment.
I am cold capping. Don’t have any problems at all with it but although the hair on the back of my head is still thick, it’s pretty thin on top!. No intention of shaving. Hope they let me continue with it ( with the gauze covering the bare parts) to help with regrowth
Sorry to hear you’re having such a hard time of it, but you’re getting through it . Keep crossing off the days!!! Surgery should be a breeze compared to chemo. I had lumpectomy first , and that was so much more straightforward to cope with. I’ll have radiotherapy after my chemo.
I’m the same with the hair, thick at the back and bald patch on top, looks daft!!!
Very quiet on here, hope everyone is doing as well as they can? Sending positive vibes out to you all.
I’ve got my PICC line in now ,after being a bit resistant to it. Fitting was trauma free, just getting used to it now. I will miss doing my yoga/ pilates which kept me sane and kept back pain in check. Ah well. All a trade off.
How are you doing @Kara ? I saw you posted on October thread about Docetaxel side effects. Hope you are managing ok and getting good advice ? Xx
I’m missing my yoga & Pilates too with the picc but it makes treatment so much easier. I think downward dog is out as is anything with body weight in just that arm but otherwise we can still move. I’ve been joining Vicky Fox’s yoga for cancer online on a Sunday morning & it’s very gentle but challenging enough during chemo for me x
Thanks for that tip @whataloadof , I’ll try the online yoga for cancer. I was told not to raise arms above head which seems to preclude many yoga positions, and also there are always lots of lying on one side things for both yoga and pilates which are out, but yes, i’m sure there are lots of things that ARE posible, expecially with a bit of imagination and adaptation!! Ta for encouraging me xx
Yeah it’s all a bit rubbish! After a reasonable weekend things took a turn. i called advice line yesterday about sore throat/white tongue plus godawful burning pain in fingers, they suggested mouth wash from gp, but despite me asking for it to go to local pharmacy GP sent to wrong place and went to online version so have a wait for delivery. And the nurse on helpline spoke to registrar who said the finger pain ( that’ll be peripheral neuropathy)wasn’t something they could do much about as a known side effect though it may inform next dosage. It’s so hard to even get painkillers out of a packet!
However although I felt it was a bit vague, I felt I had down my bit in calling. And one thing the helpline always seems to do is call back the next day to follow up. So I was expecting a check in, and got the most amazing nurse who was most frustrated about the pharmacy mix up, and was very sympathetic to how awful am feeling… and who has, I kid you not, said to leave with her and she offered to DROP IT ROUND TO MY HOUSE on her way home from work as she knows I don’t drive😫 she also thinks I may need flucanazole as well as mouth wash as my tongue so white and was going to talk to oncologist (my main oncologist, not registrar) to check. Assuming she finds my house okay I should get an early evening drop off of medication which is reassuring. She said if things get worse I probably will have to go in, as am obviously feeling dreadful, but thinks I am okay at home for now.
Once again I am overwhelmed by unexpected kindness.
To be honest I realised I have one flucanazole iny drawer if absolutely necessary but obviously they are trying to supply mouthwash to and I think just seeing the nurse will reassure me a bit.
Had district nurse yesterday and while she was cleaning pICC I came over all funny and had to lie down with legs in the air! She was very kind too and said she’d be worrying about me all day! I think I look how I feel this week!!
My PICC took a long time to settle @nib32 but it is a good thing and does make life easier. You also get a weekly visit from district nurse, which can add extra reassurance sometimes if you need a second opinion about calling advice line!
I know people have used suzzi pads for hands to prevent neuropathy during treatment but not sure how they keep them frozen when I am half hour from hospital, and allowing for traffic and delays it’s usually an hour and half at least before chemo kicks off, by which time the gel pads would have defrosted surely? I have no idea.
Positives: less intense nausea than eC. I could not have coped with that on top of this, mentally
Also it brooks no arguments, I have to stop. There’s an odd relief in knowing you just have to lie down, that you can’t possibly work, there’s no danger of pushing yourself or dithering about doing things because it makes the decision for you. That’s a flip side to a negative.
So bed for me and riding it out and hoping next week is better. Hoping nerve damage does not get long lasting though. I am an artist, the idea of my hands being like this long term is distressing….