Looking for Her2 Positive survivor stories
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hi all,
Thank you all for the encouraging stories. I am going for my 3rd chemo next week. I am stage 3a her2+. After 6 rounds of Taxotere, carboplatin, hercaptin and parjeta, I’ll have double mastectomy, radiation and continue with the hercaptin. My question for the wonderful survivors who used Taxotere,did your hair grow back? I recently heard that Taxotere can give you permanent hair loss!!
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Sweetbean, thanks for dropping by and sharing your story. Cancer free almost 8 years is a wonderful thing!
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Sweetbean, I too want to thank you for sharing your affirming story. Good to hear you are 8 years out. When there is so much negative about cancer it is so encouraging when in the early stages relatively speaking. Wishing you all the best as you continue to heal.
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Nisha - Yes, my hair grew back. It actually started coming in while I was still on the chemo! At almost 18 months since finishing TCHP, it's past my shoulders.
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Nisha- I'm three and a half months post chemo and my hair is growing in nice and thick. I was on TCHP 6 rounds.My hair is silver and gray. My hairdresser told me within a month she'll be able to dye my hair again. I have said no to gray. My doctor told me a very small percentage of women have permanent hair loss from taxlotere. None of us wants to be in that percentage.
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thank you notverybrave and jo6359! Yes, no one definitely wants to be in that small percentage. I wish there was a way of knowing whether or not we will be in that small percentage. I’m glad both of you got your beautiful hair nack
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I am 62 years old and have been diagnosed with ER and PR negative Her2 Positive BC, 2nd stage. So far all tests show no lymph node involvement but I will know more after surgery. I am having a single mastectomy on Oct. 9th and a month later my MO wants to start me on the TCHP regimen once every 3 weeks for 6 times. Needless to say I have never been so scared in my life. Although others have stated that they feel "run down" on this chemotherapy regimen, I am looking for more of a definitive description of how others actually feel especially with women my age going through this. Your help is most appreciated. Thank you!
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Robyn- I am a 59 years old. I am hormone negative and her2 positive. I am stage 2B. I had one positive lymph node. I received the same treatment regime as you. I had a double mastectomy January 29th 2018 and begin chemotherapy tchp on February 16th followed with 25 radiation treatments that began on July 5th. I was very fortunate I tolerated chemo well. Within three weeks I lost my hair. Within 8 to 10 weeks I lost all the hair on my body. Losing my eyelashes impacted me much more than losing the hair on my head. My major side effects were horrible / metallic taste for food and liquids, Vision difficulties and fatigue. Occasionally I would experience blisters on my feet and hands and they would disappear within 2 to 3 days. Occasionally I would feel a disconnect from my body and brain. I felt my response time was delayed but this two passed in a couple of days. Throughout chemo Iran and power walked almost every single day except for chemo day. Yes I did feel fatigued but I always felt better once I started moving around. I'm three and a half months post chemo my hair is growing in nicely and the hair on the rest of my body has returned. My eyelashes will fill in and then a week later they will fall out but I've heard this is common. Diarrhea is very common on this regime and it's attributed to both the taxes here and there herceptin. I have only experienced diarrhea 3 days since I began chemo in February. Each individual is different and their side effects are different. I was in excellent Health prior to my diagnosis. I am a vegetarian, nonsmoker, minimal drinking, Runner and generally very active in all aspects of my life. it made it easier for me to deal with the side effects. For some women on top of having to deal with chemotherapy and surgeries, they have other health issues. Some women are being told by the doctors they need to stop smoking and drinking , lose weight, start exercising, etc. You have to look at yourself and your lifestyle and make the decisions that work for you . The women on these threads are wonderful. They are very generous in sharing ideas and tips on how to cope with the side effects and to offer support. I found taking Claritin 3 days prior to my treatment almost completely eliminated any muscle / bone pain. I repeat each individual is different and have different side effects. some individuals have an extremely difficult time with chemotherapy. It it is a very scary time once you begin the treatment I believe your anxiety lessens. For myself, waiting is the worst part. Remember, it is doable. And you will get through this.
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I was diagnosed 8 years ago today, 2.6cm tumor with two positive nodes. I was treated not long after Herceptin was approved for early stage use - it had previously only been used for stage IV patients. Perjeta was not yet approved for any patients other than advanced, so I did not receive it. I had bi-lateral mastectomy and chemo adjuvently, 6 infusions of Taxotere, Carboplatin, Herceptin, then continued with Herceptin for the remainder of the year. I did participate in a clinical trial for a Her2+ recurrence prevention vaccine 6 months after my last Herceptin, which lasted 5 years. Although I had a number of complications surgically, I have no regrets and am grateful for all of the treatment I received and for my physicians who have cared for me with warmth, innovation, a personalized approach, and professionalism. I feel very fortunate
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Hi Ladies-
I never come on the site anymore in fact lost my password. My name is Michelle and am now 10.5 years past dx..
Triple positive...TCH and double mastectomy..all is good and it will be for you as well.
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Thanks Grace5 and SpecialK for posting. It gives a lot of hope and confidence.
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Thanks Grace and Pipador. It's always great to hear from long-term survivors.
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hi robyns64-
First, I am so sorry about your diagnosis. I will try to be as honest as possible but Dont want to scare you even more. I’m 37 and was diagnosed with her2+ stage 3a this past July. My treatment schedule was different from yours- I’m currently undergoing chemo treatments first tchp (I have lymph node(a) involvement, however, they won’t know how many until surgery), second surgery, then radiation, and finally targeted therapy of hercaptin for a year. For me, I feel like I’m getting the worst of the treatments done first. I’m actually looking forward to everything else as they hopefully won’t be as bad.
First and foremost, you should remember that everyone’s SE’s are different. That’s what I learned after joining this website. Some have it very tough unfortunately, while others not as tough. Also, each chemo round can be different. Some being easier than others. I personally wasn’t expecting my SE’s to be so bad because I figured I’m fairly young and pretty healthy so I’ll get through chemo easily. Boy was I wrong. The first one was bad, second was worse. I have my third one in a couple hours today. After the second one I was adamant to quit. I even met with 2 MO’s to let them know I’m quitting. Of course they were not for it. But they said it was my choice, but they recommend I keep going. I ultimately decided to continue because of my husband and family. However, what makes this time different is my husband and I did a lot of research on our own for side effects management. We actually started taking side effects medications on Monday as we were seeing that many women recommended that. We also got a home health nurse who will be coming to my house twice a week to give me fluids, anti nausea medicine, and steroids through IV. I really feel this will help. One piece of advice you should definitely use is to get IV fluids as many times as you can. it makes a world of difference. My 1st round I was unable to go to the hospital for fluids because I couldn’t leave the house due to side effects so they finally offered me a nurse to come to me starting 3rd round.My second chemo I did make it to the hospital on my 11th day to get fluids but getting them earlier would’ve been better. Also, take all the Side effects medications the doctor prescribed and do your own research on when to start taking them. Take the anti nausea medications throughout the day even if you’re not nauseous. My first two chemos I was very bad at taking medications but I’m not taking any chances this time. I would also suggest getting a dental check up before chemo starts to help minimize oral issues during chemo. Also, figure out what you will want to do with your hair before chemo starts. And if you’ll do a wig, have it ready beforehand.
Anyways, I have to start getting ready for my chemo. I wish you all the best. Oh and one more thing, prayers help! Please let me know how you’re doing. Good luck!
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Just popping in to let you all know that Im here!!! I am a 5 plus year survivor 😊😊😊My bio details my treatment; I’ve been through the tough medical “marathon” that we all run. Still see my oncologist every 6 months and am part of the KATHERINE clinical trial. After my appointment in January, I will graduate to seeing my onc annually!!
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Hi Firlstrong. Just read your txt. You are a year ahead of me. So far 4 clear mamo after treatment. L9ve, Jean
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Nisha517...thank you so much! I wish you all the best and many many years of good health. God Bless.
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jo6359...thank you for your input! I am happy that you tolerated chemo so well and I hope I can do the same! Wishing you nothing but the best.
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Heading to my PET ct Scan this Thursday. Praying there isnt any cancer left in my lungs. Aside from the leg cramps from the Tamoxifen I feel great. The Kadcyla gave me minimal SEs tired for the first few days and then slowly back to feeling good. covet the prayers of my BC Her2 +++ sisters for a good result on Oct 4th.
AngelsGal
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Hoping with you Angelsgal that results are good.
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AngelsGal57 - Sending good thoughts for a clean scan. Like you I started having Tamoxifen leg cramps. MO advised me to take magnesium supplements. Apparently, it is an electrolyte imbalance and not uncommon.
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any survivors who opted to do fewer than 6 tchp, like 4 or 5
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Thinking about you Angel. How did the scan go?
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Angelsgal- have you received the results from your scan? I've been out of touch during the past week due to work schedule and Mom visiting.
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Hello, I am five years out, ER/PR+ stage 2B ILC with micromet in sentinel node. My tumor was over 5cm when diagnosed as it didn't show up for years on mammograms until the last one. I had neoadjuvant hormonal therapy with partial response, 2 lumpectomies and a double mastectomy w/immediate reconstruction. Following surgery, I had some issues with low grade lymphedema and frozen shoulder due to ALND (17 nodes removed), but recovered from all that okay. It was many years before I was able to not look in the mirror at my new foobs and wonder what the heck just happened.
I was able to skip chemo or radiation, but the side effects of AI therapy are not fun either. Insomnia, joint pain, brain fog, depression, who knows what else....
You have to learn how to deal with the fear. I've learned a lot about self care - therapy, meditation, and yoga has helped me. Also connecting with my survivor friends (in person is best, but online helps, too!). This was my go-to site for for many years during those dark times and helped me feel I wasn't alone.
I recently stopped taking my daily Aromasin after 5 years as my providers don't recommend extended therapy for me. I'm considered low risk, but don't take much comfort in that as I know that both ILC and ER+ survivors tend to recur years out from diagnosis.
I don't think I'll ever get over the little nagging fear in the back of my mind, but that's what keeps me going to the doc and checking things out. Besides, there are other things to worry about. I have osteoporosis due to the AIs so need to choose and stay on a treatment plan. Also, I have arthritis almost everywhere it seems - and I need to have hip surgery. UGH. I'm feeling old, but am told I look great!!!! I just wish I could sleep!
Most of the time I feel very fortunate to be alive during a time when we have all these modern advances compared to 25 years ago when I lost my best friend to breast cancer.
Next week I go in for my final MO visit before 'graduating' - that's going to be a big step for me. Scared, yes, always, but life holds no guarantees for anyone.
Hugs to all my survivor sisters!
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I just had my 9 year checkup - all good.
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stlcardsfan-Congrats on a great checkup? Do you still experience anxiety whenever you have a check up?
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yes...! Wondering the same thing. I have a follow up CT scan next week (docs tell me routine for 2 years post treatment) and my anxiety is pretty out of control right now.
Celebrating your news with you...!
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Hi everyone,
No results yet on my scan
I am doing that increase of Magnesium and Calcium. Dr agrees that I should stop taking Tamox because of the pain. . See Dr next Thurs. Will be discussing alternatives. though insurance doesnt have Aromasin in the formulary.
thanks
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Angelsgal-Im sorry you had so much pain on Tamox. Let us know when you get the results back on your scan.
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Hi my Her2 friends,
I have been very lucky with all of my treatments and insurance until hitting a brick wall yesterday. Because of the extream SI's and pain with Tamoxifen my Dr is switching me to a yet to be determined alternative medication. The next step in treatment has proven to be Aromasin which is an AI. I have found out that Aromasin and Letrozole and Arimedex are not in my insurance formulary. My doctor is going to have to fight them to let me have it...It may be due to expense. I will see what he says next week when I get my Scan results and we discuss what to do at my next infusion treatment.
What has been your experience? Anyone had the same problem and won?
UPDATE: I can get Aromasin through the pharmacy at COSTCO!!!!!
AngelsGal
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