@nib32 Just on my way for chemo … I raised the biso with my oncologist on Monday and getting a Dexa. She was only going to discuss it next time in our final meeting.
As I have esophageal issues, daily tablets are a no go due to their side effects. So 6mthly infusions over 3yrs is the plan at the minute. She’s discussing hormone therapy in full next time - Anastrozole planned initially. As I’m prone to inflammatory pain and arthritis(s) it may be a swap and see until i get one that works. Really not happy about getting menopause again. Ffs. I was done. This is an unreal shit show for sure.
Kxxx
Edit:
Oncologist said biso starts with last chemo at my trust, then bye bye picc line! So should get infusion end of July. Then Jan/ July going fwd.
thank you @orchid2 that really helps and thank you @slc1 I am also so sorry that yours has been delayed, but hopefully its for a good reason that your body needed that break, if you had it, it may have really knocked you down. (oh goodness read further down and you did get unwell, really hope you are feeling better today).
And I know from this group we all react to each of these drugs differently so not one set rule for everyone so fingers crossed my hair will return. I guess it is very minor in the grand scheme of what we are all going through really.
I feel weirdly excited for surgery (I know when I get there I will be scared) but its the fact chemo will be over and the tumour will be finally coming out of my body. When they told me I had cancer I was like get it out right now! It will also symbolise being so much closer to having control back over my life again.
I’m also scheduled for bisophosphonates - first infusion next month. Had the obligatory dental check yesterday! I’ll be having infusions every 6 months for 3 years
I’m pre menopausal but my tumour is high risk of recurrence, so after oncotype report my treatment plan changed from radiotherapy and tamoxifen to a more aggressive approach of chemo, radiotherapy, Zoladex injections, anastrazole, bisophosphonates + ribociclib
I’m really grateful to have all these treatments available to me, but it’s a lot to process!
Had my first Zoladex jab today.
Whilst I was there they told me I was eligible for pneumonia vacc and that I should have it …. If only I’d had it before I was hospitalised with pneumonia in cycle 3!!!
@rbf good old Zoladex, I have had 3 of those now and was told they would stop after chemo but have now been told that they will likely continue for 5 years, basically wanting to sterilize me. I don’t get why they gave me the option to freeze my eggs when they want to freeze my ovaries for 5 years. Not the most pleasant of injections either and leaves a dot on your belly I have 3 so far so will have about 60 after the 5 years, need to start on that bio oil! lol
It’s started a conversation about suzzi pads… how are they still cold enough when you get to chemo (if you live somewhere distance from hospital and there are usually delays?). The logistics are puzzling us but in my case it’s become apparent something is needed!!
@Kara just leaving chemo now and pads still cold - not frozen. I use a freezer cool bag, pads made up in socks and gloves in their bags straight in, pop in freezer blocks x3 /8hr freeze ones.
Never had an issue keeping them cold enough. I wear knee high conpression socks and wrist length fingerless compression gloves.
Everything on as cold cap cool down starts for that 30 mins. Pop off for 10 - 15 mins whilst docetaxel starts. Back on for next 45 mins. Off for 15 mins whilst cyclophosphamide starts then on for last 15mins.
So far no neuropathy, nails still growing albeit slowly. A little yellow tinge but no movement. I do use Polybalm, irregularly, and water based nail varnish with gentle oil based pad to change colour up.
This has worked for me but Docetaxel effects everyone differently so always be aware.
So weird isn’t it - can give it to protect your ovaries for chemo or use it to stop them completely…. I’m in the latter camp. Was also asked about egg and embryo freezing before hand.
Haha oh good tip, I actually already have bio oil!!!
By the way, has anybody suffered with night sweats?
I wake up in the middle of the night absolutely drenched in sweat. It’s so gross. I have now started sleeping on a towel and I have to change my nightwear.
It started a week after my first EC and is now becoming more frequent (even though I haven’t had EC for 4 weeks now).
Neither my oncologist or BC nurse are concerned and offer no real advice.
It could be chemo induced menopause I suppose, but I have no symptoms during the day
Just wondered if anyone else had experienced this?
@poptart Sorry to say it sounds like menopause symptom. You can get good value menopause pjs / underwera from Primark.
Can help to not feel quite so yucky at night. I use a fan to get off to sleep im also a aleg out butt out sleeper. Swamp foo is a real ick, vagisil products are fab.
Or it might just be an accumulative effect of EC but items will still help!
I have been catching up on the recent chat. @poptart sorry to read about your hospital stay. I am glad that you are home now and hope you are recovering well.
I am switching to weekly paclitaxel tomorrow. The change and apprehension of what’s to come is scary. I m still cold capping and it is going well sofar. I still have a decent head of hair. It’s a bit thinner but was thick to start with. Bald patches only around ears. Eyelashes have given up and eyes are sore now.
I bought the susipads but I don’t know if I can face them with cold capping. I am taking the gloves tomorrow and see how it goes. I might try the boots next time. On EC Itried icy water in my mouth. I think it worked but for rounds 3 and 4 it made me feel sick so I stopped and now have a very dry mouth and sore tongue. Now the thought of icy water makes me feel nauseous. I don’t think I can face that tomorrow. Does anyone know if mouth sores are common with paclitaxel?
I have @poptart Started right after my first EC. Oncologist says it could be the chemo or the steroids or chemo induced start of menopause Joys! I got a silentnight cooling gel pad which I keep at the bottom of the bed and pull under me when I wake up sweating and that’s really helped. Have to say they’ve got much better since I’ve switched to Docetaxel so maybe it was the EC for me x
Steroids … stare - oids
Hours staring at the TV taking nothing in, same for reading a book or rather re reading the same pages, staring at the ceiling as head whirls …
Renaming them wakey-oids or b’stard-oids.
Absolutely shattered but brain says no.
^ this took forever to type.
Arghhhh … one more round of this to go. TG.
Kxxx
aka Twitchy Eyes, yup they’re back! Fatigue it is.
Oooh @rbf can you tell me where you use bio oil? I love the stuff, but used to use it on my face as a moisturiser (can’t afford Clarins any more . It was suggested not to use on the face, but if you can use it on other parts of body I am in!
I’ve started using coconut butter on my legs and it has completely sorted the horrible itchy dry skin on my legs and feet. Cheap as chips in Holland and Barrett (and you could probably cook your chips in it too
@lumpybyebye Thanks I’ll have a look at those PJ’s from Primark.
Sorry to are in the middle of the dreaded insomnia induced steroid phase. It sucks. I like the rename of stare-oids - sums it up perfectly! I always feel like I’m in a bit of a zombie like trance.
I like the sound of the cooling gel pad, I’m going to have a look at ordering one of those.
Interesting your symptoms improved once you switched from EC. I’m switching to Paclitaxel tomorrow so I hope there’s an improvement.
@nastynork Good luck with the switch to Paclitaxel. I’m the same - I start weekly Pax on Friday. I’m hoping I’ll tolerate the lower dose weekly infusions better. Let me know how it goes for you.
@Jaygo you gently massage bio oil on scars to help flatten and improve the appearance. One of my children had extensive surgeries and we used it a lot x
@poptart I had my paclitaxel today. The antihistamine drip made me very sleepy. I couldn’t concentrate on anything for my usual cold capping distraction. I came home and slept for a few hours. I couldn’t stand the suzipads for more than 10 minutes, so I did 10 mins on 10 mins off. I didn’t take the cold socks I will wait to see if any symptoms develop.
I went to the loo during infusion and when they stopped the cold cap it sprang a big leak and I had to take it off and was covered in pinkish cold liquid. They didn’t have another medium so I had to do a large with medium outer. Not a great fit but better than nothing. They padded out between inner and outer to get a better fit at the back. I was without cooling for 15 mins so I hope my hair can hold on. Paclitaxel is supposed to be gentler than EC so fingers crossed. Glad it didn’t happen on EC.
Joys! I got a silentnight cooling gel pad which I keep at the bottom of the bed and pull under me when I wake up sweating and that’s really helped. Have to say they’ve got much better since I’ve switched to Docetaxel so maybe it was the EC for me x
. It was suggested not to use on the face, but if you can use it on other parts of body I am in!