HER2 Herceptin treatment

Pelope

I was diagnosed with invasive ductile carcinoma HER2+ in August. Had lumpectomy and started Taxol and Herceptin on 1 December. I will have my last Taxol infusion on 16 February but Herceptin will continue for a year! Radiation will start in March. Like most of you every infusion leave me more fatigued and it takes longer to recuperate before the next. I seems endless!

I've just joined and am a bit frazzled by it all. So I get HER2+ will be with me forever and I'll just have to be watchful! I'm 77 years old but most of you sound young and with your whole lives ahead of you!

Patty_BC2new_her2_AK

https://csn.cancer.org/discussion/326239/her2-herceptin-treatment

Hi Penlope, thank you for posting! My BC basic diagnosis is similar to yours and so is the treatment protocol. I had same type of BC 21 years ago, but was Hormone+-, Her2 -. This time its just the opposite (opposite quadrant of breast as well) so is considered a new malignant tumor. I had my lumpectomy last year 30 December, 1st chemo with Herceptin was 14 Feb and scheduled for 3 months; 3 week break then localized radiation and chest lymph nodes 5 times a week for 6 weeks, Herceptin continues until Feb 2024.

I'm familiar with the surgery and radiation, but this chemo/Herceptin treatment is completely new. Actually, there's been much improvement in medical science and technology since my last treatments. Much better and I'm thankful for that! Herceptin significantly lowers the risk of recurrence, so another positive.👍️

I have some things to take care of this morning, so I'll close for now. I'd be grateful if we can connect as our journeys continue. The cancer staging I have so far and how it is considered early stage is where I have some confusion as far as the oncologist's choice for this treatment regiment and I'd like to compare notes, as well as anything else specific to this BC, treatment, and side effects. 🙏

Meanwhile, I hope you have been able to celebrate having your last chemo treatment and are finding more energy than you've had before. Congratulations for clearing the first hurdle! 😅🎉❤️

Patty in Alaska

Pelope

https://csn.cancer.org/discussion/comment/1704092#Comment_1704092

Hello Patty in Alaska! So this is your second time with BC... that definitely scares me as it's my first time around. I'm 77 and I don't think I'll stand another round of chemo and Herceptin plus radiation. These last few treatments have devastated my poor body with such weakness and fatigue, sporadic pain, sinus headaches, bm's that leave me totally dehydrated, etc ... I'm done with Taxol now and they've got me scheduled for a mega dose of Herceptin on Thursday. Then more every three weeks. Have an appointment with radiation 1st March, terrified!

Thank you for your kind words. I should be celebrating but these last 3 days have been horrid and don't have strength to be cheerful. Now P, are you just having Herceptin treatments? I'd love to continue our communication as only us victims of this horrible illness know what goes on. Just ask me anything and as soon as I see my doctor re ongoing Herceptin treatment and radiation, I'll share things with you.

Take care P in Akaska. By the way my name is Jacqueline but somehow I messed up when I registered. I live in Charlotte NC. Stay warm and be strong! Jacqueline

LJGrammas

Hi Ladies,

I am 52 and was just diagnosed with breast cancer (e/p+ and HER2 +) I haven't started any treatment yet but I am terrified. I have an added worry. I am a cdiff survivor and have been clear of the infection for 3 years now and hoping it doesn't roar it's ugly head during cancer treatment. I should find out on Friday what my treatment will look like. I know it will be surgery, chemo, herceptin for a year and radiation + hormone therapy but not sure what order the surgery/chemo will be. My tumor is 9X9 mm and as of right now no lymphnode involvement. That could change during the surgery but I'm hoping not. I am so scared and feel so alone sometimes. On the flip side, I keep myself busy, am still working and trying to find joy in every day. Afterall, worrying about something before it happens is not healthy. It's just so hard to do. I'd love to come along on this journey with you if you'll have me.

Pelope

https://csn.cancer.org/discussion/comment/1704139#Comment_1704139

Hello LJGrammas, oh dear do not be terrified for you are still young and strong and you can do it! Look at me at 77, I've pulled through somehow...though as I said before, the last three infusions (Taxol + Herceptin) have been cruel! Side effects seem to linger a bit longer.

I did 12 weeks of Taxorl and finished last week but will carry on with Herceptin. That was after surgery and implant of a mediport on my chest. Surgery was not a big deal as far as discomfort and pain, and mediport either. My oncologist suggested SuzziPad cold therapy socks and mittens to wear while getting Taxol infusion to help with neuropathy. It helped a lot, I'd suggest you Google these and talk to your dr. I keep them in the freezer and bring them in a cooler with me. Plan to bring a blanket as well; I got very cold during infusions.

Your nutrition is important, lots of protein and as much water as you can drink. Have Imodium at hand and anti nausea. Rest when your body asks and take good care. I started shedding and hair got everywhere so I chopped it all off. I've been given masses of beanies and a wig. Now I'll try caps as well.

I will continue Herceptin every 3 weeks for some time. Also will have consult with radiology nx week to start radiation. I will let you know when I have started.

Be brave dear, and what worked for me with "people" with scary stories and strange questions was saying: "I appreciate what you're saying but it is making me anxious, I'd rather not talk about it".

Stay in touch. A big hug and like my mom used to say to me in Spanish: valor! (Courage!)

Jacqueline

jm42

https://csn.cancer.org/discussion/326239/her2-herceptin-treatment

Hi Penelope and others who have shared,

I’m age 43, was 42 at diagnosis which is E/P+ & HER2+. Was diagnosed Aug 24, 2022, had a lumpectomy in Sep. All the scans done in Oct, and Chemo and Herceptin began Nov.

I was to have 12 weeks of Taxol but had a very bad reaction during the first treatment and was switched to Abraxane which was given every 3 weeks for the remainder of the 12 week period. I had very bad nerve and bone pain for a few days after each chemo, was torture. I’m so glad it’s done now. My last chemo was the end of Jan 2023, herceptin will continue every 3 weeks for rest of the year. I’ll be having 19 treatments or radiation starting Mar 3. I’m anxious about it.

I’ve been doing walking each day and basic weight lifting to keep my strength up. But do feel tired still, and feels challenging to be jumping right into radiation after finishing chemo. It also sounds like they’ll start me on tamoxifen during radiation so it’s going to be a challenging month to come.

But, I know I need this to give myself the best survival rate so that keeps me going. I remember the shock I was in when first diagnosed. It all seems unreal and still does at times. People here have been great and supportive.

jenny.

LJGrammas

https://csn.cancer.org/discussion/comment/1704146#Comment_1704146

I appreciate your responding to me. You are an inspiration. I was doing really well and today out of nowhere, at work, I had a panic attack. It was ugly. Lots of tears but luckily I have great co-workers. My fear is that I am a cdiff survivor. That in itself is a victory. I have to be very careful not to get diarreha or it can come back. Basically it is a depletion of the good bacteria in your gut and the bad bacteria takes over. There is no way to know if it will come back or not. It's wait and see. I did have a fecal transplant 3 years ago and haven't had it since. That's got to be a good thing! I am not allowed to take Immodium or anything like that. It is dangerous for me and can cause mega toxic colon (I think I got that right.) I do have an infectious disease doctor on my team. I'm just feeling really uneasy. I don't understand illness during chemo. It looks like some people have gotten sick during treatment and although that isn't the best and is to be avoided, it looks like they could recover. What happens if you get sick during chemo? Please try to understand I'm not being an weird way but do people die if they get sick? As you can tell, my anxiety is high today.