ER-, PR-, Her2+ Roll call
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Fishingal68
Before my seizures I had no symptoms whatsoever. My seizures happened 12/3/18 and I had just had my 3 month checkup end of November. My bloodwork was fine, nothing abnormal. The cancer metastasized to my brain and the swelling is what caused my seizure. No headaches, no nothing!!! Very scary cause I had no idea what was happening to me. Had 4 lesion all small so I was a good candidate for the gamma knife procedure. I go back Feb 4 for another MRI of the brain. Any questions please ask.
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duffyzmom- thank you so much!!!!!Will get my mother to try that out to help her! She has been losing weight and has had reduced in appetite. Anything that helps through this?
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Hi Erkipper- I am someone who has been on Kadcyla - it worked well for me for a while, and we recently switched off it and did Taxol Perjeta Herceptin. That worked better and now am on Herceptin and Perjeta. We are all different, but I can report that other than a bad rash, Kadcyla was great - relatively speaking.
As for fears and young families I can relate to that too- I was first diagnosed 20 years ago and at that time I had preschool, 1st and 3rd graders. Like you, I did a lot of praying, and what I can tell you is that for me, by praying for reassurance that God will give me what I need -come what may- I have found great peace.
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Thank you for the info. Hoping between the Gamma Knife and Kadcyla they work for me. Alot of good and positive vibes on these forums. I have prayed everyday and Ive been getting better but the thought of leaving my family terrifies me. I know God will give me what i need. I need them though!!!
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My MO told me yesterday that once I finish the Taxol and Herceptin, there is another, but oral medication he wants to put me on. Does anyone know what that might be?
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It is called Neratinib or Nerylix. Apparently works well for women who are her2+ and hormone positive. Does not show a clear benefit for her 2+ and hormone negative. My MO did not want me on it. He said it may cause life altering diarrhea, and the benefit are questionable for this type of cancer.
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i already found it. They may want to run a study to see if that reputation is deserved, then. Here is the article which indicates hormone positive has better results with it. "Positive opinion on the marketing authorisation for Nerlynx (neratinib) Outcome of re-examination" I'm willing to try it, so long as they stop it if there are problems. I have been repeatedly asked about diarrhea, so maybe they think that is the factor that makes the difference.
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McBaker - you might want to read through this forum on Nerlynx.
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I'm hormone negative and her2-positive. My MO flatly stated he did not want to put me on any additional medications unless there was an issue. Is it standard protocol now to start on Nerlynx if you're early stage and have finished with herceptin and perjeta?
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They checked liver function last time I had blood drawn. They have repeatedly asked about diarrhea. He made the point that I was diagnosed very early. Beyond that, I know nothing. I suspect that there is a clinical trial to determine what factors could increase success with this group. Such as early diagnosis, consistently following the protocol, controlling the diarrhea will keep the med in the body long enough for it to do what it is supposed to do.
I don't have any grandbabies yet.
I read it all, MinusTwo
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McBaker - You'll have to let us know how it goes. I thought the requirements were Herceptin AND Perteta before Nerlynx. I know there is also a time limit past original treatment, and I'm too far out to have Nerlynx as an available option.
That said - I lost 60 lbs with diarrhea due to chemo and really couldn't afford to lose even 10. So I probably would not have tried it in any case.
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I could lose 60 and be somewhat thin, but the saggy skin would be troublesome.
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I'm 5'8" tall. In my whole life since 8th grade I've never worn less than a size 12. When I started chemo I was wearing 14/16. When I finished I was wearing 4/6 and truly looked anorexic. I'll do pretty much anything to avoid more "Big D".
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What is going on is that I have another form of neuropathy, congenital and probably hereditary. The chemo neuropathy is hitting me hard. I had neuro testing a week ago, had already had it done three years ago. If after Taxol and Herceptin, the cancer were to return, more chemo could permanently put me in a wheelchair, and possibly profoundly deaf. It is not likely to happen, given my early diagnosis, but it is in the realm of possibility. That is the reason for considering Nerlynx. And weight loss would be a positive, as I could be more physically active, and keep the loss off. So, yes, if I wanted to avoid the decision of more chemo, I would do Nerlynx.
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McBaker - sorry to hear about the neuropathy. I do understand. I have CIPN, with permanently dead feet and fingers that occasionally are better or worse. Sounds like you're making a good choice.
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McBaker, neuropathy was a big concern for me too. You may want to check out this article. It wasn't pleasant to freeze my hands and feet during infusions, but it worked for me.
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Erkipper
I had a metastatic recurrence to the lungs while under herceptin & perjeta. They’ve started me on Kadcyla and I had my 2nd cycle last week. Kadcyla is herceptin combined with a taxane. It works better than herceptin and a taxane seperately because the molecules are linked together, so the herceptin can “deliver” the chemo directly to the tumor, so it tends to work more efficiently, and with less side effects.
I’ve heard from pharmacists and nurses that Kadcyla is generally very well tolerated. I’ve also heard some ladies have been on ot for a while. For every 3 weeks, I feel bad about 3 days. After that I feel fine
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dya- did your lab show a spread of cancer? I'm just trying to wrap my head around If you're receiving herceptin and perjeta how were you aware the cancer had spread?
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I had a chest cat scan and they found spots on my lungs, about a month or so before I was done with my year of H&P. At the time it was inconclusive so they monitored.
Control scan that occurred about 2 months later and the spots had grown. One of them was biopsied and positive for cancer. That's how they found out it spread.
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Dya that’s so frustrating. My diagnosis is pretty much the same as yours although I don’t know how many affected lymph nodes yet as I haven’t had surgery. I’m currently in the neo-adjuvant chemo part. It’s so disappointing that despite throwing everything at it and with targeted therapies such as herceptin and perjeta thiscancer still finds a way to evade and come back. However I’ve heard that Kadcyla is very effective and women are living decades in stage IV who are HER2 positive.
Out of interest did you have a pathologically complete response to chemo? In line with the Katherine trial my MO and I have decided that I’ll have Kadcyla instead of herceptin if I don’t get the pCR. Has anyone else done this yet?
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Erkipper--I am so sorry you have to go through this. I don't have personal experience with Kadcyla, but I've heard very good things about it. Were you also treated with Perjeta? I'm right at 3 1/2 years and it's so frustrating. Even my doc told me if it's gonna show back up, now is the time and yet no scans unless I have symptoms except for my mammograms and yearly breast MRI which I'm getting today in about an hour. Please know that we're all here for you and I hope treatment goes well. I too heard Kadcyla is well tolerated.
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dya- I just has my 2nd cycle Tuesday, also every 3 weeks. Felt awful yesterday feeling pretty good today. I had no symptoms on my 1st cycle but Ill take it. So much better than the chemo I had 3 years ago. Out for days after each cylce and lost my hair. My doc told me how the Kadcyla worked which sounds awesome I just try my best to stay positive. On a good note the MRI I had on my brain Monday shows the 4 lesion I had back in December have all reduced in size from the Gamma knife and no more new lesions have appeared.
Fidgit- I was treated with herceptin, perjeta and 2 more nasty chemos, sorry I dont remember the names and dont have my info in front of me. The no scans unless there are symptoms is what I dont understand. If this type of cancer is so aggressive then I think scans should be done at least yearly. If not for my seizures back in December I would have never known it has spread to my brain and my lymph nodes. I had just had my 3 month visit 2 weeks before my seizures and all my labs came back normal and I went every 3 months like I was told. Im very angry but I thank God Im still here and im being treated and so far everything is working the way I had hope at least the brain part. I should get a CT scan after my 3rd cycle of Kadcyla and hope its good new then too!!!
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Good luck Erkipper! It’s the same where I’m being treated in Australia- no scans unless you have symptoms. In fact when they do the initial staging scans on diagnosis they don’t even do a brain scan then. I’ve been getting some headaches which I suspected was the chemo but they sent me for a CT brain scan last week. My MO said that her threshold for symptoms is low.Fidget my doctor said the danger period for recurrence is 2-3 yrs so hopefully you’re out of the danger zone now!0
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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. Doing the happy dance!0 -
Pip - GREAT news. Congrats. Celebrating with you!!!
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Thank you Minustwo! You've been there right from the get go. It means a lot to me.
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I hear all of you. I finished my herceptin and perjeta on January 25th of 2019. I tolerated the treatment very well but now it's visits every 3 months with Labs. I'm pleased with no scans yet on the other hand it's like what if something happens? I guess that's what we live with, huh?
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Jo, it is. There's pre and post cancer life, but a lot of ladies on this forum say you manage the anxiety better with time, and that's been my experience. Enjoy the heck out of all that's good and hang in there
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Pip-i don't dwell on it. I live my life exactly the way I did before cancer. I was very healthy before bc and remain healthy. Since finishing H@P I have read from many women blaming NOT finding reoccurence soon enough because of NOT having scans. The what ifs are there but life goes on. Thank You for your feedback. I agree with you.
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Simmi - no I did not have pcr... I had fairly good response w/ herceptin and taxotere, but they switched me on CEF after 3 taxotere and I had a recurrence, so I got emergency surgery.
Glad Kadcyla is treating you well Erkipper. It’s treating me well too. My respiratory symptoms due to my lung mets have diminished; no more wheezing and less chest pain when I take deep breath. Guess it’s working. It’ll be a matter of how long I guess
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