In the interest of transparency and honesty, they didn’t let up for me I’m afraid….
Cycle 2 I was hospitalised for a day and started on antibiotics and was rough for a while
Cycle 3 I was hospitalised for 5 days with pneumonia and felt bloody dreadful for a good couple of weeks
Cycle 4 I stayed clear of chest infection but cumulative side effects had me bed ridden all over Christmas feeling mega yucky!!!
But everyone is different and it doesn’t mean you will have a bad time the whole way through
Some people seem to sail through so maybe your worst was the first?
Saying all that about my side effects, it’s important to point out they don’t last the whole cycle. I usually had a horrid few days/ week but aside of that I have still been working throughout and managing ok.
You were right, it was quite quick in the end. Doctor saw me and agreed the discharge and I was out by lunchtime. So grateful and happy to be home!
I’m seeing my oncologist on Wednesday and I’m just hoping that she’ll say I can continue with chemo on Friday. It will be my first Paclitaxel so I’m a bit apprehensive but I just need to get on with it.
@poptart yayy to finally being released! You must be so relieved.
@tessie86 so sorry, would never wish to worry you. I researched a lot pre-chemo as I’m such an information person, and I happened across a story of a woman who didn’t cold cap and had Docetaxol, and whose team never informed her that it could be permanent with that particular drug. I can’t remember her name, but she runs a charity now I believe giving away headscarves etc. It is likely very rare this happens but it’s wrong to me that patients are not told of the possibility so they can make informed decisions x
Had oncology this morning and bloods and they weren’t back all fully for the appointment so she said she would call me if any concerns! Not expecting to hear anything a then she called neutrophils 0.5!!
So no treatment for me and i’ve been so anxious to start EC this week and not i have to wait!
the worst part of of it all is i feel well!! This is now 3 cycles of 4 has
to have a week delay because of my neutrophils!
sorry guys just feel so annoyed that it’s another delay!
You might be talking about Jo from the charity Preloved Rel0ved Cancer & Beyond. She indeed suffers PCIA - permanent chemotherapy induced alopecia - from docetaxel.
Like you, I researched alot before hand so I was aware of this, and I noticed it listed as a possible side effect, (in amongst dozens of others, ). on the consent form I had to sign, but it certainly wasn’t discussed with me which is terrible really.
@Kara just like @rbf I’ve had quite a wibbly journey with Docetaxel / Cyclophosphamide but still going! The main effects for me last between a week and 10days and do subside. The big SE involved tweaking of meds to incorporate antihistamine infusion before admin of drugs, reduction of dose to 80% from #4 onwards as the cummulative effects were nasty, extra nightly antihistamine. If you click on me you can see my chats of the ick journey, lol.
Best advice is if in doubt, shout out and dial your emergency number. Keep an eye on red patches on your hands, if they get larger, get more under armpits, groin area, chest it may be a histamine reaction - your body fighting the chemo so you may need antihistamines. Ring the number if this happens. If they do appear or spread - take your rings off, hands can swell quite quickly.
Re cold capping I read one of the research papers on it and in the category of women with permanent hair loss it included women who had measurably lower hair density even if it wasn’t visibly thinner. Also hair thins after menopause anyway so some of it may be due to that rather than chemo. The upshot of that is, the % figure of women with permanent hair loss isn’t as bad as it sounds as it includes thinner hair not just 100% no hair.
I think starting with cold capping even if you can’t carry on is also better than not doing it at all.
Thankyou and i know it’s for the best just frustrating when i feel well!
But hay who knows whats brewing
They said they’re gunna have to take into real consideration my dose and this keeps happening!
Again this chemo journey is the gift that keeps giving and surprising!
@tessie86 can i also add i’ve had a few occasions whilst cold capping where the staff have made comments basically saying i don’t know why your bothering! So not very encouraging! I’m not sure about the Docataxel as not having that but remember you done what was right for you in that moment!
So, quite a few of you are saying that surgery will be easier than chemo. I don’t know if it’s because it’s 4 in the morning and I can’t sleep, but I can’t see how my mastectomy and full node clearance is going to be easier than chemo, I just can’t?
@dilly I’ve had surgery first now started chemo, I had mastectomy with implant reconstruction and full node clearance and it was ok main discomfort only lasted about a week, do the stretches and take it easy I was only on paracetamol for about 8/9 days and after 6 weeks was running on the treadmill again, I know everyone is different but in my experience it wasn’t anywhere near as bad as I had feared xx you’ve got this!
@dilly big hug. I think the surgery easier than chemo is because it is one and done, usually. Then revovery, not just a break for a few weeks and back in again. You are allowed to be overwhelmed. I had surgery first with full aux then chemo so have a view of both. I recovered better from the surgery, but did have to have a second to give better margins. Again, lumpectomy with delayed reconstruction until later this year after rads. So many different chemos, pre and post surgery it is a lot. Have your feels and talk to your BCN all emotions are valid, all cancer journeys are individual. It is not a one fits all.
Kxxx
@lumpybyebye yes, it’s so individual, isn’t it x Facing surgery is hard for me too because I have Myasthenia Gravis which has a significantly increased risk with general anaesthetic, so that’s an extra dimension. Chemo has been brutal, but for me my cycles of Docetaxel, which were the worst, already feel like they were a hundred years ago. I find the whole concept of mastectomy so primitive and barbaric. It’s 2026, yet for some of us actually cutting off a piece of our bodies is still the only solution.
@dilly:pink_heart: You’re having a tough head day lovely. It is bloody hard. I’m on steroid day - stupidly hoovered and made my back worse! Keeping grasping for normal.
Next round of feckn Docetaxel tomorrow then final one in tbree weeks. Cant wait for it to be over. Stupidly started scoping out the radiotherapy chat group, feckn hell that is another level of shit show!
Told by oncologist that i’ll be getting 6mthly infusions of bisophosphates for the next few years. I can’t have the daily meds due to ongoing medical conditions tbat would worsen. The side effects are brutal of mega infusion. However, gives me an extra 4% life expectancy in the long term so got to be done - thats extra life without recurrence. The joy of 54 post menopausal- protecting my bones. Dexa scan pending, vitamin d infusions and calcium blah blah bollocks. So much with BC. Arghhhhh.
Kx
Got these to wear during chemo so picc line access and my arms stay warm. I’ve also popped onto the radiotherapy thread and ladies have recommended them. As it’s a chest out, mixed gender staff possibility for the rads - it can get a bit nippy and you feel quite exposed … i did consider full length satin Dita Von Tesse but wasnt sure I’d pull ot off, lol. Just need to get a crop top I can shimmy down when needed - not doing the exposed walk for randoms when I’m still in darkness for my hubby. Yup, still find scars hard.
Kx
@dilly i hope you ok it’s bloody hard juggling all these emotions isn’t it!i actually before i started chemo fear chemo and it’s been rough but now im getting closer to the surgery part that terrifies me!
i’m still 4 cycles of EC off! and let’s face it probs will take a while as my bloods don’t seem to ever play ball! but the thought of the next stage (surgery) it’s proper daunting!
Also guys so my neutrophils being low last night resulted in an overnight stay as about 11pm my PICC become agony and red and like it was burning add in bloody temp of 38.9 so they wanted me in after calling the magic number. IV ABX twice and home on oral and still have to wait to see what the cultures show which can take a couple of days apparently if they show something might have to go back for my IVs!
That’s interesting @lumpybyebye ive just looked at the predict chart as not been offered bisophosphates, mine doesn’t make happy reading not sure why I’m bothering with any treatment to be honest but will ask oncologist about it when I go next!
Oh @loupy I’ve read that your team should go through your Predict score with you. That might be the best option: I know I’ve done it myself, but we might have put in incorrect info, etc, and frighten ourselves xxx
Ah, @lumpybyebye you’re the first person I’ve seen mention the bisphosphonates. ( I’m postmenopausaI too, missing the old HRT, sigh….) I should be starting the bissoon, as infusions first with chemo, and then carry on with tablets after chemo, for however many years. Not started yet, think it’s got forgotten about somewhere along the way, so I’ve emailed a reminder to oncologist….
This is now 3 cycles of 4 has
@dilly:pink_heart: You’re having a tough head day lovely. It is bloody hard. I’m on steroid day - stupidly hoovered and made my back worse! Keeping grasping for normal.
it’s bloody hard juggling all these emotions isn’t it!i actually before i started chemo fear chemo and it’s been rough but now im getting closer to the surgery part that terrifies me!
but will ask oncologist about it when I go next!