Looking for Her2 Positive survivor stories
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Thanks Angelsgal. This forum is a blessing and I I'm thankful that people keep coming back.
Just back from my third annual follow up appointment. Yearly mammogram and heart ultrasound were good. No more heart ultrasounds going forward and MRI mammogram next year.
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Pipandor, and everyone else too!
I am still doing well though weary of the fatigue and insomnia from the Aromasin. My Oncologist suggested taking Drowsy formula Benadryl along with the 20 mg of timerelease Melatonin to help me to fall asleep. I do fall asleep better, yet wake up in the morning feeling very tired and like I didnt sleep restfully.
Does anyone have any suggestions for getting restful sleep while on this AI 5 year plan?
Angelsgal57
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Thank you all so much for taking time to post! It's very encouraging. My doctor urged me to seek out these kinds of positive stories.
Dee
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Angelsgal-I suffer from insomnia post chemo and H@P. It isn't just aromasin. Unfortunately, there are so many different Cancer Treatments which cause insomnia. I take drowsy Benadryl with melatonin. Sometimes I get very good results others just wide awake. It sucks
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Hi Angelsgal. Glad you're doing well. My treatment was different than yours but I never went back to sleeping the way I used to. I seem to sleep better on the days when I exercise, even lightly, especially if it's outside, and when I don't drink coffee and alcohol. Eating dinner at least a couple of hours before bedtime helps too. I'm not a purist about it though. I figure sleeping less is also part of ageing and nap whenever I can.
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celebrating 8 years and still kicking, knock on wood. I have two things that suck. Getting to sleep and painful sex. I a, working o. Some things for both of them,,but it sure beats the alternative! Glad to be here and glad to be living lif
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flufqueen- I'm with you. Another sleepless night.
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Chiming in to have my attendance checked. Seven years NED this month. Went through three years on Tamoxifen then now on AI for the past three years. Just the weight gain and bad knees, but, life is good
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Hi Mel,
Congrats for 22 cancer free milestone.wereyou her2 positive
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Just had my 7.5 year cancer free checkup from Triple Positive this past week. I had a huge 6.5 cm tumor, 9 positive nodes, had a heart attack during AC chemo, and was only able to have 3 months of Herceptin (highly Her 2 Pos) because of permanent heart damage due to Herceptin. Perjeta was not in the picture. I was terrified I only had 3 months of Herceptin.
I'm still here and feel better than I have in 7.5 years. It has only continued to be better for me. My heart issues have never gone away, but have been much improved by meds. My side effects have decreased on AI (Arimidex) over the almost 7 years of being on it. I still have checkups every 6 months, and plan to be on AIs a very long time. My bones have held out, thankfully.
Sending hope to all!!
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deniseg-Thanks foe the update. Continue to do fantastic.
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Had a scare. Found a lump at the edge if my lumpectomy. Turned out to be scar tissue. Will have my 5th hopefully clear yearly mamo in September. God is good! Love, Jean
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my surgeon is proposing lumpectomy but I think a mastectomy will at least eliminate recurrence in Brest. In my case, with very larg breast where I cannot detect anything unless very large will be stressful. Because of my large Brest to avoid body imbalance I have to go I guess with double mastectomy. My question is what is the recovery time for lumpectomy and bilateral mastectomy?
Is the mastectomy decreased radio sessions vs lampectomy? What and why you chose mastectomy or lumpectomy ? Thank yo
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Margun, I would follow your doctor's advice and opt for the lumpectomy. Many people are unaware of the fact that even mastectomy may not prevent cancer from returning to the chest wall. I have had both lumpectomy and mastectomy.. I have lymphedema and burning of my chest wall. especially when i sleep. Even my shoulder is impacted by my surgery. Even though i have a top notch surgeon, i still suffer from nerve damage. If you are comfortable with the lumpecomy option, and you do not carry a gene for breast cancer, I would very carefully think through my options.Tthis surgery is a life altering experience even if you get a complete cure and no recurrence. I wish you well and may you find peace in your decision.
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honey bear. If you do not monde and wearing. Why you had lumpectomy and then mustectom? My concern is that my breast are to big to notice any mass and I am relatively young and have a high school kid so I want prevent what I can. Then I heard that mustectomy can decrease radio needed which will its se as well. Thank
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I have undergone the chemo and now doing Herceptin. The last Herceptin left me with hives and severe skin problems and I am afraid tom continue
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airstriptrip-i have heard ladies ask for a decrease in dosage? Is this something you could ask your oncologist?
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to ladies that gave fine Ac and taxol. The Ac was very harsh on my extreme fatigue, for at least 8 days no appetite the eating was crossifying experience, was planning to work but could not wanted to lie down. Nurs said some people work with Ac so i think I am a rare weak body?
After Ac is 12 weekly taxol and nurs said would be easier. But I want to know your experience on theae2 . Are there people that had tough Ac but could continue there routine while on taxol
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Hello Air
Sorry to hear about your experience with Herceptin. The only way I could have it, due to similar symptoms, was with an intravenous antihistamine in the drip before hand.
Worth discussing with your oncologist?
Best wishes
Alice
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please answer if you had Ac and taxol. I have rough experience with Ac I feel rug for at lest 10 days and eating is cand did not finish yet. Is taxol easier? What expect with taxo? Mine will be weakly 12. Taxols.
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My AC was certainly more difficult than Taxol although that wasn't a walk in the park either. It became much easier when I was just on herceptin and perjeta every 3 weeks. You can do this. One day at a time and soon it will be over. Love, Jean
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Hi,
I am coming up on 14 years. Dx age 46 premenopausal with Stage 1, 2 tumors both ER-, PR-, and Her 2+++. Had lumpectomy with A/C chemo, then Taxol and 10 months of Herceptin (couldn't make it to a year due to lowering MUGA scores). Then 26 rads.
Five years later had BRAC testing, tested positive for BRACA 2, had both ovaries removed. Couple years later after much contemplation I had bilateral nipple sparing mastectomy with reconstruction with expanders then silicone implants.
So far so good. The worry never truly goes away though
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Thank you for sharing BostonNorthWest-
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Help please. I was as emergency since Friday due to fever. Until now preliminary test results do not show infection but all be more cleare by Wednesday. So by now no one knows the cause of feverI am on untibiotics and have always f'ulike Domptons: cold feet hands even legs. Istill no one knows the cause of the fever. Wednesday it will be cleare if I will be allowed to go forward with next Ac. I horrified with next Ac but I will be devastated to postpone it because it is not safe. Any of you hadfever and how the bump was handeled?
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margun- a friend of mine consistently had an elevated temperature during chemo. It never reached the point where she had to delay the chemo. I know a few women on these threads who really struggled with elevated temperatures and extremely low white blood counts. A few of them did put their chemo on hold until their temperatures return to normal. Try not to imagine the worst but think of the best case scenario.
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keep the faith. I am almost a 101/2 year survivor.
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Thank you for your story.
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thanks for tour stories that keep e going through this horrible Ac. If not I would give up. I have 22 taxol to go and I am hoping it will be easier on me. What was your experience Ac vs tacol
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Hi Margun. Sorry you are having a rough time. I can't comment on AC but I have seen women here reporting that it's tougher than taxol. I found the 12 weekly infusions of taxol quite doable. I have never heard of anyone receiving 22 consecutive infusions of taxol so I'm hoping that's a typo!
To get in touch with people who share a profile similar to yours you might want to use your pathology report and treatment plan to put up your own profile by clicking on My Profile in the top menus and filling out the information.
Hang tight and keep coming back for the good news that's often posted here. It helps!
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Hi to the Herceptin Sisters of Survival (sounds more like a good band)!
I am 1 year post end of my Herceptin injections and coming up to end of June will be 2 years post surgery, the real moment of being 'clear of cancer' with my lumpectomy. I am fit, well and working out, running a bit too, and worked all the way through. I do suffer with sleeplessness, menopausal symptoms, bone aches and general PTSD, but the exercise really does help, and there are times now when 'I had breast cancer' is not the first opener of conversations that I use! Just want to say to anyone going through treatment now that it does get better, and you do feel more like you again after treatment, sometimes even a better version of you. I had the courage to leave my support network in the UK and my parents (yes, I am 48, but during treatment mum stayed with me and looked after me at 46!), and take a great job in Boston. I don't think the pre-cancer me would have had the guts to do that, x
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