Hi lovelies, I will start chemo soon. Perjeta as part of second part of my chemo is additional cost and not essential, what are your thoughts or experience on it?I am most likely going to go ahead and pay for it but would love to hear from other experience or point of view.

I was diagnosed with stage 2 HER2+ earlier this year and just finished 6 rounds of TCHP chemo. Same as you, I was offered Perjeta and told it's not essential but works well alongside Herceptin for better results. Perjeta cost me $6000 but for me it was a no-brainer. I am only 30 years old and want to do everything in my power to stay alive. For me, it worked. I found out a couple days ago the cancer was completely eradicated and I had a complete response to chemo! If you have the option and the money, do the Perjeta. It saved my life and I hope it helps you as well x

@Cheri Happy to help, I know reading everyone's experiences who came before me was invaluable. Good luck with your genetic testing, it's hard to wait so long for those results but I'm wishing they come back negative for you. 1. If you haven't had kids yet/want kids in future, ask about fertility preservation PRIOR to starting chemo. It's free for cancer patients (except for your out-of-pocket cost of the medications and the initial ultrasound) and they were able to fast-track mine in under two weeks so that I could start chemo asap. You can also request Zoladex which is a monthly injection that shuts down your ovaries to protect them (it's a horrible needle but worth it).2. Your mouth may feel very strange each cycle for about a week or so and eating will become very difficult. I couldn't stand the texture of any dry foods and water tasted awful. Combined with nausea, eating and drinking will become near impossible despite any grand plans you initially had of eating nutritiously throughout chemo. Try and stay as hydrated as possible, you will feel worse if you get dehydrated, and choke down as much food as you can, especially high protein foods to help rebuild the healthy cells that the chemo is killing. You want to try and stay as strong as possible. I found Sustagen and Hydralyte helpful. In the end though, just eat what your body will tolerate. For me, the only thing I could stomach without throwing up at one point was chips. So that's all I ate for a little bit. You may have different cravings each cycle. 3. Try to stay on top of your meds, especially the anti-nausea and anti diarrhoea. They are easier to prevent than to try and control once they set in so take them from the start. I also recommend anti reflux meds too if you experience that problem. Chemo messes up your whole digestive system. 4. Try and exercise when you can. Even short walks around the block. Apparently it helps offset some of the side effects a little. Rest when you need to as well. 5. Chemo can destroy the inside lining of your nose and cause "chemo nose" - putting paw paw ointment inside can help to avoid this. I didn't do this in the first place and had nosebleeds every day for months. 6. For me personally, my hair started to fall out around two weeks after my first round of TCHP. Shaving your head prior to this can help to avoid finding hair all over your sheets and house. Cold capping helps avoid full hair loss but I didn't bother with that. 7. I don't know where you are located, but there are usually local charities that you can reach out too that help you out. My local one contributed $1000 to my wig and offer support groups, free retreats and massages. They are wonderful and I highly recommend looking into this in your area. 8. The steroids they give you make you feel fine for a day or two after each round of chemo. Don't be fooled, the effects usually hit on the 3rd or 4th day. I also found melatonin or sleeping tablets helpful as the steroids can cause insomnia. 9. I found following some cancer pages on instagram, etc very helpful in not feeling so lonely. If you're on insta, I found 'thecancerpatient' to be a wonderful community with interesting posts. 'cancer_shitposts' and 'thankscancer' are also good ones and have memes you can relate to and I find it validating and quite funny. It's good to have something funny and relatable to turn to when you're feeling like crap from chemo. 10. Write everything down. Your schedule during cancer treatment is hectic, and chemo can cause forgetfulness and brain fog (chemo brain) so write everything down so you don't forget any important info/dates. 11. Allow others to help you.12. Don't make the mistake I did and go down the google rabbit hole. It never ends well. I learned that the hard way. A lot of info on google is outdated. If you must google, go on the proper government websites that have current statistics and info for Australia. 13. If you haven't listened to the Upfront about Breast Cancer podcast by BCNA, I highly recommend it. It helped me a lot. 14. Google 'Know your Knockers' - it's a downloadable guide to help you navigate breast cancer. There is valuable info in there about HER2+ and about each stage of the journey (chemo, surgery, radiation). 15. As chemo throws you into medical menopause, be prepared for possible hot flashes and mood swings!16. You'll be at the chemo ward for several hours each infusion. My first one took 8 hours as they had to do it very slow to monitor for adverse reactions. After the first time, it usually takes 4ish hours each subsequent round. Some places have sandwiches to offer, but it's a good idea to pack your own snacks just in case and something to keep you occupied for several hours. Bit lengthy sorry. There's a lot more I could add but that's all off the top of my head. I hope they help. Some of the above I failed in doing and then ended up struggling, so I hope my tips help you. But don't feel like a failure if you struggle with them too, chemo is not easy. But you sound so strong and I know you will get through this xx

@Brianna what a wealth of information, thank you so much. This is so appreciated, thank you xxx

@Cheri So glad you are getting the Perjeta! Thank you, I did still need surgery, currently recovering from it. Surgery seems to be a necessity in most cases. I underwent a nipple-sparing double mastectomy with immediate reconstruction - my surgeon just wanted to do a lumpectomy but at the end of the day you need to listen to your gut and fight for what will give you greater peace of mind. In my case we discovered a bit of DCIS near the original tumour that we had no idea about, something that could easily have been missed if I had just gone with the lumpectomy. So now I'm going to have radiation because some of it could still be in me. Just something to think about when you start to plan your surgery and make a decision about lumpectomy vs mastectomy.Best of luck to you going through chemo - the TCHP is a nasty cocktail but it does a good job of killing the cancer. Take care of yourself and if you want any tips to get through it I'm happy to help xx

Wonderful advice there, @Brianna xx

Perjeta/ Trastuzumab thoughts | BCNA Online Network

19 Replies

Afraser
Member
2 years ago
I have an arrhythmia (irregular heartbeat) - it started while I was having chemo and before I started Herceptin. It might have been chemo, surgery, age or any old thing. I was monitored through Herceptin and continue to be so. My heart is healthy (apart from the problem with the electronics!) and eleven years on remains so even though the irregularity is irregularly still there. I have no way of knowing for sure about the benefit of Herceptin but I have no regrets about having it.
Brianna
Member
2 years ago
@Julz67 That's good to hear. Hope it all goes well
Brianna
Member
2 years ago
@Blossom1961It's listed on the PBS and the patient charge is $30. Mostly covered but not all, unfortunately.
Blossom1961
Member
2 years ago
@Brianna You should not have had to pay anything for the herceptin as it is covered by the government. Sounds like someone is making money out of your situation. Not acceptable.
Julz67
Member
2 years ago
@Brianna I was concerned about the Herceptin & the heart issues as I get heart palpitations since having the Covid vaccine. I mentioned it & they did an echocardiogram before I started treatment saying my heart was perfect, I'm scheduled for a follow-up echocardiogram on 19th December to double check if there's anything happening. Oncologist said there's drugs to counteract any heart issues from the Herceptin but not the chemo if that's caused any damage.
Brianna
Member
2 years ago
@Julz67 I'm not sure why you weren't offered the Herception and Perjeta at the same time as chemo.. I don't know your entire situation but Herceptin can cause heart issues, so if that's a pre-existing problem for you then that could be the reason.
If it's the TCHP he's talking about re the other treatment, I paid $6000 for the 6 rounds of Perjeta and $30 for each Herceptin infusion. I went through the public system and drew on some savings as private health wouldn't cover me. It is do-able, but can understand that it would be extra financial stress with a special needs son and in this current economy.
Remember YOU should be the one to make the final decision on your treatment as it's YOUR life. The medical professionals are the experts and we should trust them, but you know your own body and what's right for you. Listen to your gut instinct and please advocate for yourself!!! If I hadn't listened to my gut, we likely wouldn't have discovered the DCIS and that could have come back to haunt me in the future. If you would prefer a DMX, it's not too late to tell your surgeon. You have time.
Like I said, I don't know your whole situation, but at the end of the day, do what is best for YOU.
Afraser
Member
2 years ago
A couple of add-ons to @Brianna’s helpful list.

*Not everyone on chemo gets nausea. I didn’t, not even slightly!

*The bloody, dry and uncomfortable nose may also be helped by nose oil, available at the chemist - mainly sesame oil and it works.

*I bought two good quality, new synthetic wigs rather than real hair. Much cheaper and so easy to wash and wear, no styling required. Just watch out for heat, when they say don’t open an oven door with one on, they mean it! A blast of heat can frizzle the fibre!
Julz67
Member
2 years ago
@Brianna I was diagnosed as early stage, grade 3, HER2+ on 4th September, I've just completed round 4 of chemo but haven't been offered the Perjeta only the Herceptin after 6 rounds of chemo. I have a lumpectomy scheduled for 22nd Feb 2024 & have mentioned I'd rather a DMX even though only single side affected. J said "they're past their use by date so nit required any more" but don't think they'll even consider it.
I'll mention it to my oncologist when I see him in three weeks to see what he says. He did tell me at my fist visit that there was another treatment option but it was expensive & I don't have private health insurance so maybe that was what he was talking about, he took that option off the table as he said he didn't want to cause financial hardship as I'm on my own with an adult special needs son.
arpie
Member
2 years ago
Wonderful advice there, @Brianna xx
Cheri
Member
2 years ago
@Brianna what a wealth of information, thank you so much. This is so appreciated, thank you xxx