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My journey as a husband supporting my wife’s mastectomy decision
Caregivers | Last Active: Apr 30, 2023 | Replies (142)Comment receiving replies
@zeerj, I was diagnosed last July with a small HER2 positive and Estrogen positive tumor. I have not yet met someone with HER 2 diagnosis until just now when I read your post. I am going through one year of Herceptin. What has been your experience with Herceptin? My veins are small and nurses have difficulty getting a line in. So a few weeks ago I was given an injection of Herceptin Hylecta instead of the infusion. The injection was quick and easy but later my back experienced a massive flare of symptoms with a great deal of pain and stiffness. It has been partially disabling.
Would you mind telling me what your experience was/is with Herceptin and with tamoxifen?
I would be very grateful.
Thank you very much.
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Hello, I wish you the best! Did you do surgery, mastectomy? I was diagnosed last April with stage 2 as it has spread to lymph nodes. I had a port put in so no issues with veins. They started me with 6 cycles of herceptin and perjeta. The treatments were long as I was doing the cooling cap as well for hair loss. It would knock me off for about 11 days with bone pain especially lower body and nausea. During this period I would lose about 10lbs but would gain them back before the next infusion. They would give me the Neulasta with that as well. Had mastectomy on 9/27. I had some positive lymph nodes left. They removed 9 lymph nodes and 7 were still positive. Due to this, the dr wanted to do 14 cycles of kadcyla, going for round 6 on Tues. In addition, I did 15 rounds of chemo on the impacted side which happens to be my right side, last one was done 12/1.
I haven’t been on tamoxifen.
Also, I entered a vaccine study to prevent recurrence for her2+. I was qualified due to being on kadcyla. Did you have any spread of the her2 to lymphnodes? Wish you the best, feel free to ask me any questions you have. Like you, I was looking for her2+ folks when I was first diagnosed and there are some that have replied to a post I had looking for them. 🙂 I was looking for successful experiences especially during the period when I was on the emotional rollercoaster.