Nerlynx
I am Her2+ and E+. I have just finished 12 months of chemo, radiation, last Hercepton on Thursday and ongoing Letrozol. Adding Nerlynx to the list of treatments has been an option for me however my oncologist has just let me know that it now no longer available for free on compassionate grounds by the company. It is being subsidized I believe but I would still have to pay $18000 for the year of tablets if I am eligible. The side effects sound awful :( I would love any feedback from anyone who has been on Nerlynx as to the side effects and thoughts on this.
Chemo discontinued
Hi I was 2 rounds into my chemo when I got a staf infection in my surgery site (double mastectomy) After a couple of admissions to hospital on drips and veri flow treatment and surgery , I had missed rounds 3 and 4 of chemo however I was able to continue on herceptin. It has been decided to take me off the chemo and continue on herceptin. Just wondering if any one else has had their chemo cancelled due to infection or complications I’m a bit worried about not having it it but very happy to not be continuing either?
All in my head
Onco says Herceptin does not cause side effects even though the manufacturers of herceptin says it can. So, the peripheral neuropathy, sore throat, itchy rash, ridged and cracked nails, breathlessness and insomnia are all shrugged off by the Onco because Herceptin couldn’t possibly cause them. Each new round of herceptin adds another dimension. I wonder what my head will dream up of adding next time? Next ECG test in a few weeks so hopefully that is still behaving. It is the only side effect my onco acknowledges may occur. Admittedly, some of these side effects only occur in 10% of those who choose to partake of this drug. Oh well, only five months to go.
Herceptin Side Effects
Hi I am her2+. I’ve had 6rounds of THC, a lumpectomy and sentinel node removal followed by 20 days radiotherapy. When the chemo finished I had a 6 week break from Herceptin as my heart was under strain. I have been put on beta blockers and blood pressure tablets and resumed Herceptin 5 weeks ago. I started radiotherapy at the same time. During the last 3 weeks of the 6 week break I got my taste back to normal. It was assumed the chemo had altered it. Unfortunately as soon as I started the Herceptin again my taste has been effected and I have mild nausea and upset stomach. I am gutted as I have 7 more rounds to go. I mentioned it before my second infusion but was advised taste changes aren’t a side effect of Herceptin. I am going back next week and just wondered if anyone else experienced this? Everyone seems to expect me to be thrilled it’s all over with chemo and radiotherapy but I feel more upset now than I have done before. I also feel no one will let me talk about it as it’s not as bad as it was or I’m lucky it could be worse etc. Thanks Deb
Treatment Reaction after herceptin and perjeta
Anyone developed welts/rash like marks after treatment with herceptin and perjeta? I have itchy, red blotches over my chest, underarm and back which are showing no signs of going away. Initially, I thought they were insect/mosquito bites but, on reflection, think it's unlikely the suckers could have got through a thermal top and woollen jumper. The welts appeared a day after IV treatment with the drugs, which I've been on for 18 months without this kind of reaction. We're heading for the Flinders Ranges and a long way from my GP or oncologist and I don't want to alarm the old man by trying to find medical treatment if it's not necessary. Any advice would be appreciated.
Herceptin not covered by private health fund
Has anyone else had the issue that your Herceptin treatment wasn’t covered by your health fund? I’m getting treatment through Greenslopes Private in Brisbane and have just found out that they haven’t been forwarding my hospital admissions to my health fund as they (the hospital) believe my health fund won’t pay it. The reasons they’ve cited are Herceptin isn’t on the PBS It’s an outpatient procedure (despite being admitted every time and also paying my hospital excess for admission at the start of this year) It’s not a contracted drug between the hospital and my health fund. I’m so confused. How do you get 6 months into treatment before someone tells you that you have to fork out for the treatment? I feel like I go around in circles between the health fund and the hospital as they both say different, contradictory information which still leaves me with the bill. Thanks, Jen.
