TC chemo 4 vs 6 cycles
Hello I’d like to hear from anyone who has had more than 4 cycles of adjuvant TC. I’m coming up to cycle 4 next week and I still don’t know whether that will be it or whether I will have to do more, because my oncologist has been on leave since straight after my first cycle. I’ve had a different oncologist and he has been consistory saying 4 but now is back tracking and saying it will be up to the other one! She won’t be back until early April, just before cycle 5 is scheduled. I am finding the side effects and mental toll very challenging. The uncertainty around how many cycles is playing into this because I can’t give work a definitive answer of when I’ll be back. I’m also a single parent and the fatigue is crippling. So I’d like to get an idea of in what cases would 6 cycles be given? If you had 5 or 6, why was that decision made? And what questions should I be asking of the replacement oncologist at my appointment next Tuesday to get some certainty around the timeline?
Cold Capping and hair loss experience with TC chemo
I went for my first TC chemo session with cold capping on a Paxman. I've got wavy coarse hair, that's not particularly thick. Conditioner and water was applied with a focus on the top of the head. I was expecting a brain freeze but came nowhere near that in the 2.5 hours of the cold capping. I'm a skier so I'm comparing it to having damp hair on the snowfieds. The nurse said only about 20% of his patients keep their hair. I'm now paranoid it was ineffective and am sitting at home with a bag of ice in a large ziplock affixed to my head, which feels colder than the cap. Has anyone had a similar experience with cold cap not being as cold as you expected, but still had reasonable hair retention after that session?
To Chemo or Not to Chemo
Hi everyone, Im 8 weeks post surgery (lumpectomy for ILC). I transferred from Peter Mac to my local public hospital under the impression i’d be doing Radiation.. moving between hospitals has lengthened my time waiting for treatment. After both multidisciplinary meetings, both medical teams have recommended chemotherapy. Everything I read says ILC doesn’t respond to Chemo. I’m so confused! I borrowed money to do the Oncotype test and have now been told it’s not accurate for premenopausal women. Anyone have a similar experience or suggestions on who I can talk to about how to make the right decision. To chemo or not to chemo? Medically: 2 x 2cm tumors removed, Clear Margins post surgery, one 1.4mm deposit found in one of three lymph nodes.
Early Breast Cancer Treatment Decision
Hi All, I recently was diagnosed with early breast cancer (stage 1, grade 2, HER Negative, Estrogen & Prog positive, no lymph nodes involve) three weeks ago I had a double mastectomy with tissue expanders for reconstruction. I now need to choose my treatment for post surgery. For my particular case the percentage for survival purely doing the double mastectomy surgery alone is 95% when I add hormone blocker treatment it adds another 1% so 96% total which has been recommended by my oncologist to take which I will. I have been also given the option to decide if I want to also do chemo or not, the percentage benefit for my specific cancer is less than 1% at about 0.3% (so the percentage still stays at 96% survival) Is there anyone with a similar case to mine and what you decided? Or if it was you what you would do? My immediate thoughts are for a 0.3% benefit that going through 6 months of chemo with everything that comes with that is perhaps not worth doing it? The other thing I will point out is if there are any tiny microcells left in my body anywhere that hormone blockers will stop them dividing and growing, but chemo would actually kill them. Bearing in mind there is no guarantee either way that reoccurrence will or won't happen. Thoughts?
Low Vitamin D level
Hello everyone, I had my second AC treatment yesterday and got the result of a Vitamin D blood test which showed my level was 37 which is low. I now have to start on a massive dose of Vitamin D made up by a compound chemist. Has anyone else had this problem? I would be interested to hear. Thank you.
HER2+ ER+ - huge side effects
Hi I was diagnosed with HER2 positive and estrogen positive breast cancer in October 24 Am having chemo / Herceptin - perjeta weekly until 20/1 then prob surgery end of February. As I’m older 73 am so worried about survival rates and if the treatment will work I’ve had no ultrasound or anything to see if the tumour has reduced and I have a satellite cell next yo my tumour - multi 3 breast cancer it’s been terrifying to say the least and still in shock and have had huge side effects - numbness - chemo rash and sores all over my body / hair loss despite having the gold hat and diarrhoea
Neoadjuvant PLUS adjuvant chemotherapy?
Hi everyone, As my wife's neoadjuvant chemotherapy draws to a close we've been looking more forward to surgery / radiation, however her breast care coordinator dropped a new bit of information last week that, depending on the pathology of her tumour, she may require additional chemotherapy after surgery. This was a bit of a bombshell, since it's the first time we've heard anything about this being a thing and although the coordinator said that "it's a good thing, since it gives us more options", it doesn't feel like a good thing. We've been steadily working through this process for the last 4 months assuming that we'll get to the finish line and be able close the book on chemo and move on, but now it looks like we have an uncertain pathway again. I'd love to hear from anyone who's had this experience of getting through months of neoadjuvant chemotherapy only to find out that they needed more after surgery. What were the circumstances that drove that decision and what did the adjuvant portion of chemotherapy look like? Was it months of the same again, or a different regime? I get that everyone's different and your circumstances may not be exactly the same, but I'd appreciate any input so we can feel more informed and plan appropriately. Thanks! George
Considering EndoPredict before accepting Chemo
Hi everyone, I did a search and this topic hasn't been mentioned in a while since 2023. The main difference seems to be that EndoPredict ($2980) is now eligible for partial Medicare rebate ($1103). However, it is still a considerable cost for many of us. I'm having to decide whether to take the test and hope that maybe the outcome could be that Chemo is not of benefit to me. Going by what the medical oncologist told me it is doubtful that Chemo would not benefit me - the use of "aggressive" to describe my stage 3 cancer makes me think that. Though he did still mention the testing to me so I had a choice. I'm torn and scared. With my previous cancer (liposarcoma) I didn't have Chemo so it is an unknown scary beast. My two main concerns with Chemo are the heart and bone damage risks. I get that the decision to have the test is a very personal one and nobody can make that choice for me. For me it isn't just financial, the main choice is whether I consider Chemo is worth it. Even if the test comes out a low percentage for recurrence, is that enough for me to say no to Chemo? After all, the test is the risk of recurrence in 10 years and personally, I'm now on cancer number 2 (different types) in a 14 year period. Have many of you have taken the test? Or would you take it now that it is partially rebated by Medicare? Thank you for reading and being sounding boards.BYO Cold Cap?
Hi all, I have just found out that my hospital (Monash) doesn’t offer the cold cap for chemo. The breast care nurse I spoke to was very disparaging of them, saying there was no evidence they worked, which surprises me as they seem relatively common in better hospitals. She said the only option was to BYO frozen caps in an esky - has anyone here tried this? Was it successful? How do you keep the caps cold enough?
