I am also Stage 4 Breast Cancer and triple positive.
I am on treatment six of an eighteen week low Paxlitaxel course. I also have three weekly Pertuzemab and Trastuzumab and six weekly Denosumab.
Can I ask why you have been told you cannot have chemo, not even at a reduced dose? I know that Herceptin and Perjeta don't really come with side effects so I would urge you to stay on these drugs. If surgery is a possibility for you then please consider it. Doctors don't normally bother with surgery for Stage 4 so this puts you in a fortunate minority.
I don't know what you've been listening to re:side effects but I know Lerozole is a good drug and also a chemotherapy.
Can I ask you where you got the percentages of IV chemotherapy only working for three per cent of HER2 cancers?
My oncologyist also said people get treated without chemo. I'm not having chemo.
Herceptin and pertuznab are as equaly better. You can find the info on YouTube and documents on Internet.
I'm not having radiation either due to side effect and damage.
I dnt know much about the drugs but America., Spain, Germany, China they started doing immunotherapy but in UK they not allowing it. This is not good thats why people go abroad. Immunotherapy does have its side effects but is better than chemo and drugs.
I started my treatment last year, 12 weekly cycles of paclitaxol & carboplatin, 3 weekly Herceptin/Pertuzumab, followed by 4 cycles of EC every 3 weeks. My chemo ended last october. Since then I have had a mastectomy and radiotherapy. I am now on a new Anti-body/chemo drug called Kadcyla.
There are a lot of us out there - it is hard. But - it is not anything you can't handle.
Just focus on the next step, what is the next treatment? don't look too far ahead or it can become overwhelming.
Remember - you are doing this to get rid of the cancer. It is a means to an end. And it will end, just take a deep breath.
Also - make sure on your good days you try to do normal things, I know it is hard right now with all this Covid stuff. But don't let this completely take over your life. My oncologist always tells me that the important part of living with cancer is the living bit!
Hello again, hoping your treatment continues to give you good days. I am starting Kadcyla , how do you find it and maybe a silly question but how many cycles are you on or do you have it every three weeks forever.
Sorry I've not responded before this - work has been crazy busy!
I am not finding the Kadcyla too bad actually, I am getting a bit of neuropathy in my left hand, and the few days following treatment I am quite tired. but not getting anywhere near the side effects I was on the full chemo.
Because I don;t get on with the Antibodies I end up having it over an hour and 40minutes, rather than the 30 mins it can be given over. Which is a pain, becasue it takes longer - but this way I don;t get the nausea and pounding headache that usually accompanies it!
I do have to make sure to take some co-codamol and anti-nausea tablets ebfore i go in for it though.
Hello again and thank you for responding so quickly. Glad you are finding it tolerable to be on, i am too.
Have had two doses so far and finding no kick back so far but obviously that may not always be the case. i have mine infused slowly still as just beginning the regime but hope to have shorter stays in hospital soon, like you.
Hope things continue to go smoothly for you, stay in touch! x
I'm newly diagnosed but mine isnt metz but is HER2 positive and ER/PR positive grade 3 which means nothign to me except the grade 3. I haven't started treatment yet but hope to have a lumpectomy on 12/11 providing aneathetist agrees. I'm terrified as I'm the first person in my family to have it.
Dont be lonely and scared on your own as I know exactlt how ou feel. I'm willing to be your firend and talk about it if you like. I dont know how to send a personal message so had to do it this way. Please feel free to get in touch with me if you want
