Early Access Program - Kisqali / Ribociclib for EBC
Hi there, My medical oncologist called me yesterday to discuss the issues with the current early access program for early BC and Kisqali / Ribociclib. Apparently, the current formulation contains very small quantities of 'nitrosamine' which have been shown in studies to potentially (in a very small number of cases) cause another cancer. The new formulation will not be available for a few months from the manufacturer. Has anyone else who is on Ribociclib had this discussion with their med onc / decided to pause the drug - or decided that the risks are OK and chosen to continue with the medication? Noting there is a BC conference in Berlin next week (my med onc is going but not presenting) and there are a number of sessions discussing CDK4/6 inhibitors for early BC with high likelihood of recurrence. Not sure also if this affects mets patients who are on Ribociclib already too? Just when I think I'm on a certain path things change ... again. Kelly (totally acknowledging personal choice etc - but keen to know what others have been told, and if anyone is OK to share, what they have decided to do).
Radiotherapy twice in the same place?
Hello, so I was surprised today when my oncologist raised the possibility of further radiation in the same place as previously (I had 5 weeks of radiotherapy at the beginning of 2019) due to a new recurrence. I was a bit confused as I had thought you could only have a course of radiation treatment once? Has anyone had radiation treatment more than once? Is it even a thing???? Star xx
Uncertainty
Hello everyone, I have just joined this incredible network as I only just learnt it existed. I was diagnosed end of Oct 2019 with invasive ductal carcinoma, estrogen and progesterone receptor positive, grade 3. I had my strategy informed by my surgeon sorted, that I would complete the 5 month chemo and then have the breast conservation surgery followed by radiation treatment. I was fine and mentally strong progressing through the chemo treatment because I just needed to focus on the here and now and then after all this life would return to normal. Now I have finished the chemo treatment and my surgery is planned for next week and all of a sudden I am second guessing my surgery options. This is in addition to the news that I had recently received that my father has been diagnosed with terminal cancer. All of a sudden I feel nervous and thinking about reoccurrence, what’s in my control, is there a way I can minimise future risk, should I be having a mastectomy instead? I have spoken to my doctors and they say that my strategy is good for partial mastectomy /lumpectomy but ultimately it is my decision. I have a young family and alongside the covid 19 issue happening, could I revisit the full mastectomy later... Has anyone else also experienced this choice, nervousness before surgery and how did you decide? Very grateful for your time and advice.
exemestane side effects
Hi My onc has changed my Meds after a recurrence after 5years on arimidex.I’m really concerned after reading the listed side effects.Mainly the weight gain as it is a steroid A1 and most worrying That it can cause male side effects like acne and facial hair.I probably sound vain but I really can’t deal with any more disfiguring body changes . Any info appreciated
what were the decisions you took if you have had a 2nd breast cancer?...where to now
Hi lovely BCNA members,I am wanting to hear from the really"lucky" ones of us that have had 2 breast cancers and what you decided to do moving forwards. I had R DCIS rx w lumpectomy + radiotherapy in 2014 . 5yr scan - grade 1 Ca in opposite breast Left - decided on mastectomy + immediate reconstruction and now on tamoxifen with all its wonderful side effects. I am considering prophylactic mastectomy on original side but am interested to hear what everyone else has done. As my surgeon summed it up - either having major surgery with associated risks- which in my case may be as have nerve damage from radiotherapy so permanent nerve pain on entire R chest wall, breast vs living w fear of a 3rd recurrence ,increased anxiety around screening time, most likely biopsies etc as ++++ dense breasts and as just turned 50 so possibility of 30 yrs of screening etc etc.
Mayo testing a breast cancer vaccine
Mayo is testing a breast cancer & ovarian cancer vaccine that they reckon has already prevented one woman's breast cancer from developing and supposedly stopping recurrences. “It’s supposed to stimulate a patient’s own immune response so that the immune cells like t-cells would go in and attack the cancer,” Something to keep an eye on .... https://blog.thebreastcancersite.greatergood.com/cancer-vaccine-mayo/?utm_source=bcs-bcsfan&utm_medium=social-fb&utm_content=link&utm_campaign=cancer-vaccine-mayo&utm_term=1236985&fbclid=IwAR0A3GvhLmJpqu3o0KLJP6-2mj8aQ65VEn_OnvHjPS-yS7Kb4L8qeqOdbzA
Effect of High-dose Vitamin C Combined With Anti-cancer Treatment on Breast Cancer Cells.
Please see medical research link below regarding this topic. I haven't been on this site for a while and surprised I couldn't find topics on this subject except a comment from a BCNA staffer. As well as the usual Specialists, I see an integrative GP. She administers high dose Vit C infusions to breast cancer patients, including me. I've been clear now for 8 years. The medical evidence for this being beneficial in the fight against breast cancer cells is becoming clear and more widely accepted now, even among the old guard. So, I am wondering, why don't more women know about this? Are there any other women having it? If so, how is it going? https://www.ncbi.nlm.nih.gov/m/pubmed/30711954/
Costs of follow up scans and how many is too many?
I had my 18 month post surgical review yesterday. I still find these appointments rather depressing. Each time you see a different doctor (my surgeon is on long service leave) they have to trudge back over things that I have mostly tucked away at the back of my mind. Quote. "18months with the invasive cancer you had and no recurrence. You've done well." unquote. WTF. That was inspirational. Seriously what goes through some doctors heads? Isn't that why we get chopped, poisoned, nuked and hormone manipulated??????????? There needs to be a class at med school on "how to not be an unsympathetic dick" Anyhoo. The point is back for another mammo, u/s and MRI. I haven't rung up for this years prices yet but last years costs were: Mammo gap between $180 and $220 depending if there is any need for biopsy. U/s gap $125 MRI $575 no medicare rebate. Seems I am no longer in the high risk group...hahahahaha so nothing is bulk billed. So if you think you might have cancer or a strong family history you can get bulk billed, if you have had cancer you no longer fit the "high risk" check boxes so you get to pay I also wonder how many tests is it safe to have? I counted up in the last 18 months I have had 7 mammograms, 6 u/sounds I think, that could be more and 3 breast MRI's, 2 brain MRI's, 2 CT's and 2 bone scans and 1 bone density test. Whack the radiation on top of that and am I nuking myself into more problems??????Ditching the 5-year sentence of hormonal therapy?
Hello everyone, I am currently doing my second attempt at hormonal therapy drugs, and I hate it; no surprises there. I do all the things...take all the advice, all the stuff that is meant to make HT easier. But there’s only so much mindfulness you can do before just saying hey this stuff sucks and I don’t know if it’s worth it. I may be looking for a needle in a haystack lol but I’m really curious to know if the stats my onco tells me every time I see her can ever be wrong. I guess I also am in horrible denial about having to take these drugs for the rest of my life. I just can’t believe the only choice I have is life-stealing HT side effects or more breast cancer. I am very rational and scientific so of course I will take them based on the evidence and hope it prevents a relapse. I still feel so ripped off though. My question is: have any women out there started on that long jail sentence of HT meds, found that it completely ruined their quality of life, tried their very best to make it work but couldn’t, then went off it completely and DIDN’T have a relapse of breast cancer ever again? Has anyone heard any stories like this? H xo
