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
Trying to Stay Positive my journey
"You look so well, lost weight" comments from people l may have not seen for a little while. Thank you l say with a beaming smile, they don't know, should I tell them or not, I don't. l have stage 4 metastatic breast cancer incurable and aggressive l've been told, the little devils have been having a great road trip partying around my body setting up camp in several spots in my spine, hips skull, lungs, ribs, nodes. This diagnosis came about totally unexpected after an unrelated ct scan for my nigglying cough. Thank you to my great GP for insisting as I wasn't going to have it only had a slight annoying cough nothing to be concerned about. Radiologist saw suspicious lung rang spots rang gp, gp rang me and within a week after bone scans biopsies etc l was sitting in the oncologist office "best we can do is try to control this" silly me asked the question as I was still thinking this is nothing to be concerned about, how long if I don't have treatment? "12months" so here I am on the treatment. My life turned upside down and inside out in May 2018. I am now on letrozole and Kisquali (Ribociclib) and l am nervously awaiting my scans end of next week to see if this treatment is working. I am usually a happy positive person but seem to have fallen into a bit of a hole at the moment. I find it very hard at times with people telling me you look well, you're an inspiration, bla bla etc etc, when all l want to do is sit in the corner and cry. It's especially frustrating as l've already had bc in 2004, "it's only dcis" treat with radiation but the returned so left side mastectomy/reconstruction 2006, then recurrence right side 2012 "it's only dcis" again radiation and lumpectomy and l can get on with my life and nothing had shown up in my regular breast mammograms BUT some little party going cancer cells escaped and have been waiting and now have had a great road trip around my body. I find it really hard to talk to family and friends about how I am really feeling as I worry about how they are coping, so sharing my story here has already made be feel positive again, reading threads of what all the other wonderful ladies are going through is truly inspiring. I'm trying hard to stay positive for my next appointment with my wonderful Oncologist on 1 Nov and that she will tell me there is no progression. enough of my rambling thankyou for reading my storyKisqali
Hi everyone, sad day today just found out I have spread to my liver now 😩 as well as already in spin and pelvis, what I’m wanting to know is when your on kisqali and letrozole combo and it stops working so well and spread happens what was the next step for anyone it happened too? Tia enjoy your day
Kisquali and Xgeva
Hi everyone, I’m starting Kisquali tablets and Xgeva injections next Tuesday. I’m already having Zoladex injections and take Aromasin 1 x day. I was wondering what side effects anyone has experienced with Xgeva and Kisquali? My oncologist told me that Kisquali could cause sore hands and feet, nausea and low blood counts. I’m to take it for 3 weeks and have a week off, and recommence the cycle again.( He told me it’s not chemo, but it sounds a lot like it to me.) Would appreciate your thoughts. Thanks Deanna.
Recovery from pleurodesis and starting Ribociclib (amongst other things)
Hello Everyone, A bit of background 2013 i was newly diagnosed on my 39th birthday with invasive ductal carcinoma, ER + Her2 negative (Stage 2B, lumpectomy, 2/13 nodes, chemo, rads, tamoxifen) Also left my husband during treatment, for multiple reasons, a good decision. Around my 44th birthday this year in July, 5 years later, the sneaky bastard of a thing has returned! I was getting short of breath, and thought for a while that I lacked cardio fitness, even bought myself a skipping rope. This symptom did not improve and that little voice inside my head piped up to get this checked out. A chest xray revealed quite a lot of fluid in my right pleural cavity, almost 2 litres of fluid was drained, subsequent scans and cytology revealed bone mets to my spine, rib and sternum and adenocarcinoma (malignant pleural effusion) 2 weeks ago I had an operation by a cardio thoracic surgeon called a VATS talc pleurodesis, this is a more permanent solution for the fluid collecting in my chest cavity rather than having multiple aspirations to drain fluid that will just keep accumulating. Over 4 litres drained and a 6 night stay in hospital hooked up to a drain. Recovery has been slow and painful from this procedure and I'm wondering if this has been the case for other people? My lung is still colllapsed, I do hope that it will re inflate eventually, leftie is doing great but righty was squished for some time. 19th Sept I'm schedule for an oopherectomy (ovaries removed to induce menopause), jeez I hope I'm match ready for the next op! I'm sure ladies on here that have had this procedure would have mixed side effects and reactions, I guess I'm after some reassurance that I won't turn into a demon woman. My oncologist will start me on Ribociclib with an Aromatose inhibitor. This drug has very recently been approved by the PBS, are there any ladies on this drug and are you coping well with it? I have 2 beautiful boys aged 9 and 11, I truly hope to be around long enough to guide them through their milestones into adult men. That's the thing that really effects me with this diagnosis, the impact on my children. We all want our mums to be around for a long time, my mother has been an amazing support to me over the years, I could't thrive as much as I have without her. Anyway, thank you for taking the time to read my post, you chicks are amazing and I enjoy reading your posts as getting real responses to people going through the various procedures, drugs and experiences is more supportive and helpful than reading a clinical study on Dr Google. Love and healing energy to you and your families. Trish
