ER-, PR-, Her2+ Roll call
Comments
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Thanks for explaining that Melbo! I see you have the same regimen as is recommended to me. How are you feeling now? I see you started in August of 2020. Would you like to elaborate on side affects? Did you work? I am a secretary to superintendent for a school district and would like to work pt or intermittently, but won't know if that's possible until I go through a couple cycles and know my good days and bad days.. Do you think it is doable to work?
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Melbo--I'm not sure how these posts work, but I replied to yours and I think it ended up on the first page instead of just after your post.. I'm new to this and still figuring out how to manage!
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I didn’t work during chemo, but I could have if I needed to and I know several people who had TCHP and worked at the same time. I participated in the July 2020 Chemo Club on these boards and there were several of us on that forum who had TCHP and we were pretty active discussing our side effects. I highly recommend checking out that board or some of the others to see the range of experience. I also recommend participating in a February 2021 chemo board because it really helps to be able to reach out to people going through the same experience you are going through
I tolerated it pretty well. I never want to repeat the experience, but I know I could do it again if I had to. The most consistent side effects I had were fatigue, flu-like icky feelings, nausea, and diarrhea. All of my side effects responded to medication though, so it was all tolerable. I know at least a couple of people on TCHP had to drop the P (Perjeta) because of diarrhea, but I could control mine with Imodium.
At this point I feel mostly fine. My hair is starting to come back in. My eyebrows fell out a couple of weeks ago, but they are starting to come back in again. My finger and toenails are kind of a hot mess now, but they don’t hurt so I ignore how they look.
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Melbo-Thank you for the response. I will certainly join the February 2021 board and check out the other one. Sounds like your symptoms were pretty standard, not fun in the least tho. I know we all will react differently to the treatment so there's no way to know for sure what will affect me. You mentioned your eyebrows fell out a couple weeks ago after you are off chemo.. I was thinking all hair fell out during treatment.. Again, all different. I do appreciate your time in posting!
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I had my mastectomy (DCIS throughout) and they discovered a less than a cm invasive HER2++. I had chemo Taxol and Herceptin after the mastectomy. We decided the Perjeta was unnecessary, given the minimal advantage it would provide for me.
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muffet — all of my hair, except eyebrows and eyelashes fell out by the time of my third chemo. My eyebrows didn’t fall out until about 6-7 weeks after finishing chemo, which seems to be pretty common timing. I never fully lost my eyelashes, but they got super sparse and scraggly around the same time my eyebrows fell out.
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I know this board isn’t super active, but I figured I would start here since we’re all HR- and aren’t taking some of the other medications that the HR+ folks have to take.
Anyone have side effects from just the Herceptin/Perjeta? I had an infusion on Friday and I’ve been mildly dizzy, light headed, tired, and nauseous every day since then. I thought it would get better after a couple of days, but today has been worse than the others. Not nearly as bad as chemo of course and I’m functional and able to do stuff, but it’s annoying.
I’m also starting to wonder if my chemo-pause is going to translate to full menopause even though I’m only 42. I haven’t had a full on hot flash, but I’ve had many instances where I’ve gone from comfortable to way too warm in a short period of time.
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Melbo - don't you mean we are all HER2+ ?? This is really pretty active with 71 pages.
Sorry you're having issues with the H&P. I actually dropped the Perjeta after the TCHP since it gave me horrible diarrhea.
I've seen answers to this in the last 24 hours on another thread. Maybe to you? In any case, several of us agreed you should slow down the infusions. Don't let them push you into 30 minutes. When I was on Herceptin alone I insisted on AT LEAST an hour. Someone else said 90 minutes. And someone posted that you have to have an order from your MO so the infusion nurses will do it.
If I can find the other thread, I'll link it here.
Edited to say - it was a Kadcyla thread - but I believe the principle is the same.
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HR was supposed to be hormone negative. I’ve seen it used in other threads, but it confused me too. I saw the thing about slowing the infusion of Kadclya, but I didn’t think it would make a difference with H&P.
Luckily the diarrhea is still controlled with Imodium and is generally better now that I’m done with chemo.0 -
Oh yeah, slowing down made a huge difference to how I felt.
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Oh Melbo - sorry I mis-read. HR can be hormone receptive, referring to ER and PR. I usually don't use that because so many people have mixed ER & PR results.
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Melbo, I'm finishing up just H&P now (last one tomorrow!). I still had minor side effects - nothing like on the TC - but still some diarrhea (but not as bad), mouth sores (but not as bad), joint stiffness (seems to have slowly increased since starting chemo), and minor fatigue. Maybe you happened to pick up a bug and it's just a coincidence on the timing and next HP infusion won't be as bad.
I was 45 when I started chemo almost a year ago (last TC was in July) and I have not gotten my period again yet. Had some hot flashes periodically, but nothing for a few months now. I'll be happy not to deal with periods anymore.
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Hi all,
I was diagnosed with ER-, PR-, HER2+ about 21 days ago. My treatment is going to be AC, following TH (+/-P based on how my body reacts). I was talking to Melbo on another thread and she mentioned most people she has seen here are on TCHP. Anyone have had or is having AC for this type?
Thanks
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Aram - I started with TCHP. After the full course of 6 infusions, my tumor still did not have a pCR (complete response), So after surgery with clear margins, my MO still wanted to do four rounds of AC to mop up anything else that might be lurking. I made it through 3 before calling a halt. Then I did 5 weeks of rads and Herceptin only every three weeksfor the rest of the year.. So far I've been NED for 7 years.
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Hi MinusTwo, I am very happy about your NED, I hope one day I get to say that. Do you remember how the two compared in terms of side effects? Was AC much harsher than TC?
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Hard to say Aram. First - remember we all react differently. Also, when I started the AC - I was still trying to recover from 5 months of TCHP chemo, and then ALND surgery just one month before. I had already lost 60 lbs that I didn't need to loose and my blood work was looking wonky. Rather than a transfusion, I just opted to skip the AC fourth infusion.
It may have been easier if I'd started with AC. But you can't take adriamycin & herceptin at the same time since both can have possible heart complications. Also I understand you need taxotere or taxol to 'jump start' the herceptin, and my MO wanted to get that going right away.
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MinusTwo, I am sorry it was that hard on you. My main concern is the same that I might get too week for TC after AC and Surgery. I am a petite person to begin with, I have brought it up with the oncologist and he said your size doesn't matter. I have gone through pages and pages on this site and I see almost all only HER2+ have gone through TC first. I am wondering if it is a Canada US thing or is just my oncologist
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Hi Aram, I had 4 rounds of AC and followed by 11 rounds of Taxol + 4 HP, it was not too bad. The initial Taxol caused serious mouth ulcers (it went away in 5 days) so my oncologist reduced Taxol by 25%. I am petite as well but the drugs are given based on our weights. AC is more difficult to tolerate but they will give you all the medication to manage the side effects. I achieved PCR after these so it’s worth the journey.
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Hi Evergreenman, our treatment plan is very similar then. I am really happy you had pcr, as that is what we are all hoping when putting the poison in our blood.
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How are You?
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Hi everyone, my wife just got diagnosed with ER-/PR-/Her2+. Waiting for referral to get started on the treatment, hopefully sooner than later! Been doing a lot of reading and still lots more to do. Looks like it will be a long road ahead and I will get started on preparing things for her.
We have lots of stairs in our house. Has anyone encountered issues going up/down stairs? Our bedroom is on the 3rd floor, kitchen is on the 2nd floor, and we do have an office on the first floor where we can convert it to a bed.0 -
pchyen, Sorry you and your wife had to join us. Since you're probably looking for any good news you can find, hormone negative/HER2+ cancers are generally aggressive and aggressive cancers generally respond favorably to chemo. Additionally, while being HER2+ was a death sentence decades ago, now we benefit greatly from targeted treatments.
How old is your wife? Does she have pre-existing conditions that would make stair-climbing hard in normal circumstances? If not, I can't imagine it will be a problem for her during chemo. I continued to exercise throughout treatment. There were a few days after each cycle that I didn't do much, but for the most part, I continued on with life as best I could. Chemo isn't fun, but it's not like it was 30-40 years ago where you were so sick you wanted to die.
We are a bit of a minority in the breast cancer world--only about 4% of breast cancers are ER-/PR-/HER2+. It's very overwhelming when you are first diagnosed because you really don't know what's ahead. Soon you'll have a plan and it does get better. Wishing the best for your wife!
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I think stairs are going to depend on a couple of issues, but for the most part they shouldn’t be a huge problem, except possibly the first few days after surgery. Unfortunately it’s just hard to tell though since every person tolerates treatment differently.
Does every floor have a bathroom? If they put her on Perjeta, which is fairly common for HER2 once it gets to a certain stage, then diarrhea could become a huge problem. I tolerate it okay and control it with Imodium, but a lot of women don’t tolerate it well and end up stopping it.
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thank you Beesy & Melbo. Bone scan is clear, CT scan tomorrow but with the HER2+ and lymph node involvement I am pretty sure chemo first, then surgery and then more chemo?
Wife is 40, and is type-1 diabetic since she was 16. Will need to make sure we keep an eye on neuropathy during treatment as type-1 diabetics are prone to it (though she doesn't have it as she is managing her sugar well).
Been doing a lot of reading in this thread and getting a lot of valuable information.
We have bathrooms on all 3 floors so that is not an issue. I am more concerned about her going up and down stairs. Luckily I am working from home and can keep an eye on her at all times.
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generally it’s chemo (either TC (taxotere + carboplatin or AC+T are common) along with the targeted therapies of herceptin (or a bio similar) and possibly Perjeta), then surgery, then just herceptin (or a bio similar) and Perjeta to finish up a year of treatment. If she doesn’t get a complete response to traditional chemo they will likely recommend a more targeted chemo called kadclya.
It seems overwhelming and awful at first, but you adapt, and before long it seems mostly normal. I had TCHP for my first round of treatment and while I would never wish the experience on anyone, it was all tolerable and not as bad as I thought it would be.
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Neuropathy from chemo is fairly common, and if a person has nerve damage from another problem, the problems are multiplied. She might be wise to check with her diabetes specialist on upping her strategies before chemo.
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thank you Melbo & MCBaker for the responses. Will get the wife to follow up with her diabetic doctor before treatments to see what options we have. Wife doesn’t have neuropathy since she is managing her diabetes well.
Another question, biopsy report indicated low mitotic activity. Does it mean anything? Trying to find something positive0 -
Yes, means that the cells are dividing slowly, I think. If you look at my signature, you will see grade three. I think that means the same thing.
I would think that good control during good times does not mean good control when the body is going through the massive physiological and emotional stress of chemo for cancer.
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pchyen - I had 6 rounds of TCHP prior to surgery. I would watch out for the stairs. By the 5th round my legs were not reliable. Although I drove myself alone to all my treatments, I did get a cane since my legs just gave out by an elevator one day. Not a fall - they just sort of folded.
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Pchyen - I think you'll find this useful. There is also one with tips for surgery. And I joined a contemporaneous chemo group (March Chemo or Spring 21 chemo) because everyone was going through similar things in real time. Does your wife not use a computer? I think she'd find lots of support here.
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