Looking for Her2 Positive survivor stories
Comments
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Hi everyone,
I was dx 7 years ago last May, here to say I was her2+ had lumpectomy,chemo 4xAC, radiation. 17 rounds of herceptin. I will be on Tamoxifen for 10 years. I am trying to live life to the fullest and leave cancer in The rear view mirror. Stay strong!
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Is there anyone here that did not get the full number of chemotherapy treatments? I am coming up on the end of my Taxol treatments. I had to miss one (#5 or 6) due to a low WBC. I asked my MO if I would need to make that treatment up. His response was that it was an interesting question because the protocol says 12 and that is what they have research on - 12. So far they have not scheduled a 12th for me.
My husband (usually a strict by the book kind of guy) keeps saying that I don't need the 12th and that it shouldn't matter. I'm a bit nervous about it. I will have radiation therapy next and of course the continued Herceptin til next year. Is there anyone else that skipped and is ok with it
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I missed one. My onco said that it is very important to not miss any Herceptin infusions; they must go every three weeks without exception.
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Thank you MCBaker for the reply. My MO didn't mention the Herceptin when I asked. I guess for us HER-2 positives, the Herceptin or Perjeta or whatever inhibits that receptor is more important
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When I had low WBC they would just wait for the numbers to come up to give me my chemo, I never had Taxol, I had AC. usually took and extra week...I never missed any of my treatments, they were just pushed to the following week.
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bearcub- I expected them to add the missed Taxol to my schedule. Making the 29th not the 22nd my last Taxol. But so far that day remains open. I've had had to have the neupogen shots twice. This last time my WBC went from 900 to 8200. At my treatment last week, the WBC was 3400. I hope that it hasn't dropped too much for this Thursday's treatment.
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is anyone with her2 positive tumour after undergoing chemo and bilateral mastectomy could avoidradiotherapy??? I had my surgery and according to my BS no lymph node involvment but all sent to pathology lab for more detailed analysis. If path confirms that nodes are not involvment anyone avoided radiotherapy. I will have for sure targeted and hormon therapy
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Margun, if they didn't find another mass, my BS would have recommended no radiation. Only 1 of 15 nodes were positive and we knew that one all along because of my initial biopsy. He got clean margins and removed the node. It really would have been the best case scenario for me so you may not need radiation.
I'll be praying your pathology report comes back clean and no radiation treatments necessary 🙏
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Hi Dawn- thanks. I am hoping and praying as well that pathology report comes the best possible for all of us. Myself, I have to wait 2-3 weeks fir pathology report. I have initial news for nodes but I do not know anything about margines.
I knew you had one positive node which was removed but I did not know about a new mass was found. I guess it was removed during the surgery anyway , so what is the obstacle to avoid rads? We, triple positives have to take a lot of preventive meds anyway such as herceptin, hormone pills... not mentioning 6 months of chemo.
Hoping and praying for the best outcome for all of us
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Margun, BS couldn't remove the new mass. It's too close to the skin. I'm not even sure he knew it was there until we got the pathology report. It's DCIS and only 7mm so he's hoping radiation will get it. I'll know more ( like if I'm going on Kadcyla) Wednesday when I meet with my oncologist.
I'm hoping you can avoid radiation
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hi Dawn- I will wait my path report and then see what my docs would advise. I had so many mixed comments about skipping rads in case all nodes negative. Some say why avoiding rads as extra protection when they are much easier than chemo. Some others avoided chemo to not deal with other side effects related rads. I am sure some gave no any side effects after rads but some told me that they sometimes appear long after the rads are over. So as always it is not a easy choice if of Faure the docs give me a choice. I hope you are recovering well. Mine is getting better little by little but I still have some light pains here and here in my body joints. Any reminder of taxol left for you?
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I just had a mamo at Sloan-Kettering today. This will be my 5th clear mamo! Very grateful and hoping it encourages some of you. Love, Jean
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jean,
Congratulations! I head to MSK tomorrow for my annual appointment with my breast surgeon. I remember we were diagnosed pretty close together. I am almost a five year survivor!!
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lkc, thank you for posting this great post, it is truly encouraging to me!
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I am 3 1/2 years out from my diagnosis. I finally feel like myself after all the surgeries and chemo. To all the newbies....there is a light at the end of the tunnel. Just have faith
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I was DX 4 years ago this month. Have had loads of health issues since then but nothing cancer related! Living and loving life! I remember at the time of dx my kids were 4 months old and 2.5. I wondered if I'd ever get to see them start school. Now I've had the pleasure of seeing them BOTH in school. There is so much hope!
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I just passed the 9th anniversary of my diagnosis, and actually just realized it when I clicked on this thread just now!
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SpecialK - How great it is that you actually forgot it, I think it means that you are living life to the fullest and did not make cancer the main point in your life. Thanks for posting
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Congrats on ur mega milestone. It's all so wonderful!!
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Thanks! Yes, it’s nice to be able to forget that, right? I love this thread - it’s such a celebration and reinforcement of the strides made in treatment that allow us to be here!
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SpecialK - a big congratulations!!
I just had my eight year cancerversary.
It feels like such a miracle!
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Denise - glad to see you right behind me, congrats to you too! A miracle for both of us, yes
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I have 6 more radiation treatments and then of course the year of Herceptin. It's so encouraging to see all of you multiple years out from diagnosis and treatments.
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Anyone here not finish anti-hormonal treatment? I have tried it all and maybe got in three years, but the side effects are too much. I need some encouragement on this.
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Musogirk, I always,considered the anti-hormone side effects much preferable to a reoccurance of breast cancer. A fair tradeoff in my opinion. Jean
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I’ve surpassed the 9 year mark, another year to continue on Aromasin. I try not to think of side effects and have accepted whatever they are. It sure makes it easier to take the pills and now I’m worried I will have to give them up in a little less than a year. They’re my safety blanket! Rads has played a big part over the years and lymphadema is a constant battle. I’ll always be grateful to my doctors for their care that continues on every 6 months. I’ll always be considered high risk I guess. The doctors tend to tell me I have a lot going on health wise
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I have two more Herceptin infusions to go. My onco and I discussed Nerlynx yesterday. Since my HER2+ tumor was caught very early, with post-treatment monitoring I should be reasonably sure of being safe with no Nerlynx. I think he quoted a 7% recurrence rate. With 7mm and grade 1, I think it might be even lower. Anyone in my situation? The diarrhea just doesn't make it seem worthwhile, unless I wanted to lose bunches of weight (facetious remark)..
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MCBaker- is your oncologist recommending going on it?
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He says it is an option. We discussed psychological factors, and I just don't have a gut-piercing fear of cancer (my father was a 35-year survivor). He said that the reduction in risk is minimal. Stage two, yes. Stage 1a, no. I think the discussion is required.
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MCBaker - mine is/was also stage 1. But it was a grade 3 if that makes any difference. I wonder if I will get the same talk when I get to the end of my Herceptin.
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