Kisquali
FYI - I did post in private group last night but no response so thought I'd try here as well. :-) Hi there all, Strange question for you all for a Sunday night - I'm on my 13th round of Kisqali, still on 3 tablets which is highest dose. I'm taking in combination with Letrozole and the bone strengthening injection every 2-3 months. I'm doing really well on this treatment combo and apart from ridiculously disgusting dry feet that are revolting and foot pain, nausea and tiredness, I can't complain too much!! Recent PET scan has shown that my bone mets are still present but not active according to oncologist which is amazing news apparently. My question is, I think my hair is thinning out and I have a "sore head". Only way to describe it is it feels as though my hair has been up in a "tight ponytail" and scalp is sensitive. Of course, I will check with oncology nurse tomorrow but thought others might have similar experience that they could share. Can't ask anyone at home to check for bald patches as single mum here and don't want to freak my kids out totally - I think that was the hardest part of my original cancer journey for them when I shaved my head as it was all falling out from chemo. Other question for musing this late on a sunday night is, are there others in this group on Kisqali or Ribociclib combo that have been told they are doing really well - I can't seem to shake the feeling that the PET scan got it wrong!! Thanks in advance
Hair loss / extreme thinning with bone Mets medication
Hello, I would really value some advice on if it is possible to overcome the hair loss side effects of medication. My hair has really thinned out in the scalp region. I have been taking both Verzenio and Letrozole for a year to manage the bone Mets. I am now starting to feel self conscious at work. I can feel the irritation in my scalp. Is there something I should try or a different specialist I should talk to? Thank you,
Hair loss after 4 weeks
Hello everyone, I've been doing chemo (Abraxane) now for 4 weeks. The oncologist told me I will probably lose my hair. Last Sunday my scalp felt sore so I made an appointment with my hairdresser to get a hair cut on Monday. Felt so much better after the haircut. But I have noticed in the last few days that my hair is falling out a lot. It is on my pillowcase, on my clothes & all over my bathroom floor. It is falling into my food when I am eating! So in the last week I have gone from having a full head of very thick hair to a thin layer. I don't want to shave it yet but having hair everywhere is starting to annoy me. I had a good sook about this. I'm not a vain person but losing my hair will ensure everyone knows I'm sick. I hate breast cancer!!!! AngeHair loss whilst not having treatment
Hi ladies, Has anyone experienced hair loss even though they are not having treatment? I am currently not on chemo or doing any treatment for my mets, yet in the last few weeks my hair is falling out. I haven't done any chemo since July this year when I took Xeloda for two weeks and ended up in hospital. Anyway my oncologist told me I wouldn't lose my hair on Xeloda. Not sure why I'm losing my hair so much. Everytime I wash my hair, I have a handful of hair coming out and my pillow is full when I wake up in the morning. Any suggestions? Any solutions? This is really upsetting me. Thanks Ange
Roller coaster ride again.
Oh no .I'm going to loose my hair for the 3rd time ! Saw my oncologist today and she has taken me off the Affinitor and I'm starting back on Abraxane Iv this Friday. At least I'm having a port a cath put in this time, the following week just before Christmas. I was hoping that I would start after Christmas but as my pain has become more severe, she feels it is better to start straight away. I still have my blonde wig so that will be a change after having grey hair for the last few years. I will have to start looking for some more head wear as I threw out my last lot of hats and turbans. Does any one no any places were they have nice head wear . With Chritmas almost here it may be hard to get anything delivered for a while.Proper Introduction
It occurred to me I hadn't done a proper introduction on here yet so here goes. I'm the mother of soon to be two year old Amelia and the wife of my very own Magic Mike ( not a stripper of course but magical for all the very right reasons). We started on this detour late August after I had some lumps we discovered investigated which lead to immediate mastectomy and axillary dissection with 6 nodes removed, 3 positive. Staging scans resulted in our subsequent and horrifying diagnosis of lesions in the liver, ribs possibly lungs and pelvis. We have an amazing oncologist who promptly signed us up for the Peggy clinical trial which involves paclitaxel weekly and either a trial or placebo tablet. We are two months in now and feeling pretty good really. My hair loss has been the most obvious side effect for me. No nausea to speak of but feel pretty low and down in the dumps on days 3 and 4 and unfortunately I've started to get pins and needles in my finger tips and toes since my last infusion so that will be something to keep an eye on but otherwise things are going smoothly. I daren't say that out loud however, I feel like every time I get a handle on things and feel positive we get another piece of bad news. Go back to see the oncologist on Tuesday......I imagine our next focus will be scans etc for the trial as we are nearly halfway. I think that will be a nerve racking time. Anyway, love and light to you all, And thank you for creating a safe place to share be supported xxxx
Birthday Girl (well, almost!)
Hi friends, After a frantic two months of planning, Mum's birthday weekend is finally upon us! She is so very excited - it's been a real joy watching her get excited as we slowly let certain surprises slip! (Can't keep a secret from Mum - but that's okay, she likes looking forward to things rather than being overwhelmed by surprises!) Thanks to a truly beautiful organisation called The Orange Pigeon, we have been able to do more than we ever thought possible. So many people and businesses have been incredibly generous... every time I open an email, I get teary! I fly home tomorrow night and the last minute organising and setting up begins! Last time I posted, Mum had just finished WBRT. It's been difficult since that ended. She has felt really very tired, we've noticed a lot of mood swings and just 'out of character' behaviour, and she's frustrated when she can't remember things like she could a year ago. Also, she lost her hair again! I know that seems like a small thing compared to everything else, but you ladies understand! She was so proud of her new little haircut she was rocking and to have it all fall out again was quite upsetting. Both my overseas brothers have returned home - there's a five day overlap where all of us are home together, and that is going to be a very special time. I don't know when that will happen again. This weekend is sure to be fantastic. (I'm hoping I can get through my speech without bursting into tears!!!) I can't stress enough how much of a gift planning this celebration has been - for Mum, but also for all of us. I hope you're all doing okay... thinking of you. xx