TRIPLE POSITIVE GROUP
Comments
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Awesome news, tres!
I have a couple of questions for those of you that have already been through treatment.
1) I finished Taxol on 2/11 and have been on Herceptin-only since. Rads started about 1.5 weeks ago. Lately, I've noticed that I am extremely cold, especially in the evenings. I used to be a person that hated heat and wanted to be cold, but now I am incredibly cold (no fever) even though nothing has changed but me. Did this happen to anyone else after treatment? Could it be a menopause symptom? (No period since before surgery in Oct. Regular periods prior to that.)
2) This one is about hair. When did your hair start to grow back or at least stop falling out? I am having a much more severe reaction than even my docs and nurses are accustomed to from the Herceptin, so it's hard to know what is normal and what is tied to that. I am still losing quite a bit of hair more than a month after stopping Taxol. My eyebrows are almost all gone (I had held onto them throughout). Other body hair made a rapid exit this week and even the stubs on my scalp have thinned. It doesn't really bother me, but I'm wondering when things may reverse course.
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sweetie... herceptin can in some case cause thinning of your hair. It could be that it's just a continuation of fall out from taxol and Herceptin is just enough to continue it. I finished Herceptin 2/21/19 and started Herceptin only on 3/1 my hair started growing back on week 10. Now it's a little over 1/2 in long and I feel like Uncle Fester from the Addams family lol
Today I was out mowing and I went around my DH orange tree and a darned thorny branch grabbed my scarf right off my head. Oh how I hate that tree!! Next time I mow I'll wear my baseball cap I got from Breastfriends!! I was so embarrassed that they stupid tree got me!! I never go further than the front porch with my head uncovered...well it was funny and embarrassing at the same time 8)
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Sweetie, I was on TCHP and started losing my hair within 10 days. Was almost full blown bald on week 4 but kept my eyebrows and eyelashes during chemo. I continued on with H&P and get that every three weeks. About 5 weeks or so after chemo I noticed eyelashes and eyebrows where thinner and continued until at least eyebrows were gone. I understand this is common. I'm now 14 weeks out and they are starting to grow back, my hair started growing again about week 4, but just little nubbies. I now have about 1.5" growth but thinner on top but it is filling in.
Nanette, I decided to go without hats a couple of weeks ago, do I look strange, probably but I'm celebrating my journey, and flipping off cancer.
Take care all.
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knm the steroids are really important. If you tolerate taxol well, they will taper you off of them over time.
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knm--Taxol is often referred to as "chemo light". It's typically tolerated well with fewer SEs than other chemo drugs. I got an IV steroid as one of my pre-meds every time. I asked if they'd ever cut back on it since I wasn't showing any allergic reaction and they said no--I'd keep getting it (along with the Benadryl, Zofran, and Pepcid) every time. FWIW--my body seemed to adapt and after a few treatments I didn't really get the energy/sleeplessness that I did early on. I also didn't have to take it the night before, and never in pill form, but I also wasn't getting another chemo drug.
Sweetie--that is really interesting about being cold. I've told several people over the last few weeks that I feel like I've turned into an old lady this winter. I always liked the cold, tolerated it well, but have just felt cold a lot this past winter--even last night when we were out and it was close to 60 here. I'm long past menopause and never thought it might be drug-related. (I finished Taxol in early August but am still getting Herceptin every three weeks.) Maybe we'll both go back to normal next year? Re: hair, I think that's typical too--that you lose head hair, or at least notice it, earlier than other body hair, although I've also thought it takes longer for something like eyelashes to fall out because we're not pulling/brushing/washing that area? I already had a row of small new eyelashes when mine fell out--my MO said it's like the new lashes push the old ones out. Like they would have come out sooner if you just went up and pulled on them but we don't do that--make sense? And I ditched my baseball caps about 12 weeks PFC. It was a little shorter than I was planning but I had a business trip and decided I didn't want to deal with packing headwear (plus I'd be around adult professionals who wouldn't be freaked out by my hairdo ;-) ). And just FYI, a lot of women notice a couple of rounds of lash/brow loss. My understanding is that normally, we all lose a lash or two here and there, just like we do normally on our heads, but the chemo resets all of them so they're on the same growth cycle. Often around four months PFC your lashes/brows will thin again, although not go completely go away. I think a few of mine came out just this week and damn if I'm not around eight months out.
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I was diagnosed 1/25/2019 with triple positive bc. Between the bone scan, CT scans, EKG, Echo, blood tests and port placement I feel like life has been a whirlwind.
I started AC 3/1 and feel like things are beginning to settle down and I'm in a new routine. The feeling of surreal I've felt since January is starting to lift and the realization of this crappy new reality has begun to set in. I try not to let it get me down. As bad as chemo is, I know it's going to help me and I will get through this. So far the fatigue has been my worse side effect. I just don't have the stamina I did before chemo. My 1st treatment felt like I had the flu. Aches, pains, nausea and chills. My 2nd was much better. I was just wiped out and slept all of day 3. I've read treatment 3 can be awful but I'm hoping that isn't the case.
My youngest daughter surprised me with a visit yesterday. She goes to college 6 hrs away. I had been out looking for a covering to wear under my wig and when I got home she and her boyfriend were sitting in the living room. I started crying and it took a while to stop. We all want to be here for our children and share in their milestones without worrying about our illness putting a damper on it. She graduates in May and come hell or high water, I am going to look the part of a very healthy mom:-)
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Hi DawnS - I understand your fatigue, are you getting steroids with your IV's? My first round of chemo, I was feeling goooood. I went out on a shopping spree to end all sprees. (bought Furniture) then after #2 I crashed hard. At my insistence, I had my steroids extended, which helped some. Best of luck!
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rljes thank you. I did receive steroids. I had a bad reaction to them. They made me quite anxious and jittery. MO said it happens to a small amount of people and wouldn't last more than a day. I took CBD oil when I got home and it helped tremendously. I've heard others getting a great amount accomplished on chemo day. Unfortunately I just didn't have that happen. Compared to all the other side effects I could have had I consider myself lucky:-)
Best to you!
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Dawn please check out using the CBD with chemo. I read an article a while back that it could interfere with chemo. But I'm happy for you that you found it helpful against the steroids SE 8)
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Dawn - the fact that your daughter made the trip to check up on you says to me that she just wants to see a happy, proud Mom at her graduation. Talk to Ingerp. As I recall she had a college graduation or a wedding in the middle of her treatment.
I only did Taxol, but I'm certain others can give you more specific advice about what will be happening and how you'll be feeling then.
I suspect none of us would say cancer happened at the ideal time in our lives - I was scheduled to fly from Phoenix to Portland, Maine to be with my daughter while she had some surgery. Talking to my team, we were able to get my rads done and I had my port placement right after I got back.
If you post your profile and make each section public, folks on this thread can give you more specific advice. This is a roller coaster ride and it's longer for those of us who are Triple P but Herceptin has made a huge difference in our long-term outcomes. It's OK to be weepy sometimes and it's safe to talk about it here.
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Taco what a memory you have!! Dawn your post reminded me of last year. I was able to postpone chemo until I got back from my youngest's college graduation--started three days after I got back. I even managed to hang onto my hair for my own college reunion a few weeks later. How long will you be out of treatment when it's time for the graduation?
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nanette I am meeting with MO tomorrow and I'll ask about the CBD oil. It was the 1st time I used it and it really did help. I haven't needed it since.
taco your post is comforting to me. Thank you. I've read many posts on this site that help me put things into perspective. Herceptin really seems to be a game changer. Amazingly only 20 yrs ago our outcome would have been bleak. There was a movie made about the Dr who developed Herceptin. Harry Connick Jr played the part.
Ingerp I think I'll be done with my 3rd round of Taxol by my daughter's graduation. From what I've read the SEs are not nearly as bad as AC's. I've completed 2 rounds of the red devil.
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Hi Dawn, yes taxol is more tolerable than AC. I had both and the only SE I had with taxol was severe itching on my palms and soles of my feet. It was really bad, pre meds didn't work so I had to be taken off it while receiving the third dose.
Everybody is different. Best of luck
Knmtwins, so sorry you have to deal with cancer yet again, I hope you knock it off like you did the first time. All the best
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dawnS1962...you go girl!!
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All, my wife had the surgery 4 months ago, once in a while she still feels "pain" on the surgery side, not severe, not often. We mentioned this to the NP last week and were told to not be concerned. Wonder if anyone has similar experiences. Actually the pain is more obvious right after infusions (TCHP before and HP only now)
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Hi everyone,
Those suffering under chemo...take it easy, one step at a time, week by week. To the person who just got the AC #2: only two more to go. You will be over it and onto the next thing before you know it.
Pain on surgery side...I had mastectomy plus node dissection and have random pains here and there, almost one year after surgery...they cut nerves and all, it takes time to recover. But I would definitely insist that the oncology or surgeon take a look just in case.
On my side, I report that I went to an NCI cancer center and had a consultation with the director of breast medical oncology there, who quickly and calmly recommended Nerlynx (Neratinib) if I am willing to try it. He confirmed that the potential benefit is uncertain but could be significant, and that he thinks it's worth trying for someone in good shape with high risk of recurrence. And that if he was the patient, he would try it. Doesn't see a reason why the insurance won't pay for it. So I am divorcing my current oncologist (sad and difficult decision for me) and changing my care to this place, where I will try Nerlynx, and if I cannot handle it after a couple of months, I can always stop.
With the occasion of this consultation, I gathered the notes from my current MO, which I received on Saturday. I couldn't sleep all night. I couldn't recognize myself in the picture of me painted by my MO in the notes. He is describing someone who is nuts and is rudely "demanding" something completely crazy. He also misrepresented the result of a consultation I had at MSK, which was about Kadcyla, but he wrote it was about Nerlynx. I understand these notes are in part a CYA exercise, and therefore subject to some posturing, but still, this was disturbing to read. Last time I talked to him, I did push him into a corner with my questions (he was not able to answer them and contradicted himself a few times), and he is probably not used to being forcefully challenged by a woman. This has been traumatic and have shed tears about it. Hopefully this is over.
Thank you for the support everybody.
LaughingGull, who nevertheless persisted
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Dawn--you're probably aware of your typical cycle following treatment. I got Taxol on Fridays, felt good the rest of that day and Saturday, started to slump a little on Sunday and Monday, and was doing pretty well again by Tuesday. You may want to adjust the timing of your infusion to maximize the probability of feeling good on the actual graduation day.
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LaughingGull - How awful to find notes about you from your MO. I choose not to take Nerlynx, best of luck, hope minimum SE's. Would like to hear how it goes with you once you start.
LillyCh, like LaughingGull said, the nerves had been cut. Its been 1 1/2 years since my mastectomy, and I still feel like I have a golf ball under my armpit and nerve pain where they removed lymph nodes. My BS said it was because I am so thin in my chest. Hope you feel better.
Dawn, I read an article about CBD oil and Tamoxifen (They both compete for the same - oh crap chemo brain, can't think of the word) I took CBD oil for most of my chemo treatments. I can't say it made much of a difference. I told my RN during infusion I was taking it and she didn't say anything about it.
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LaughingGull - it was nice to hear from you. I'm glad you found a better MO. Sorry you had such a bad experience with your old one. My guess is that he is a general MO, not a breast oncologist? Because it sounds like he was not up to speed on the latest and greatest in breast cancer care. I agree with what your new MO said about nerlynx. I feel like if something might help and won't hurt, then there's no reason not to take it. Of course the "won't hurt" part remains to be seen, but I keep saying I'll give it a shot and if it's horrible, I'll quit taking it.
Oh yes - I wanted to add that I also have pain on the cancer side which makes it hard to lay on my side at night. For the longest time, I had this feeling that things were kind of stuck together on that side, I don't know any other way to describe it, but that feeling eventually went away except when I was in the shower, then went away completely. I still have no idea what that was about. Then for a while I had pain across two ribs where my drain line had been, but that eventually went away too. I think the pain is just the thick scar tissue not stretching/moving/behaving as it should. I also had weird shooting pains for a few months, and some soreness on the bottom, and then on the medial side of the breast which went away. No pain whatsoever on the prophylactic side, which I thought was odd. My BMX was in August, I'm getting implant revision in May and hoping I'll come out with less pain but who knows. At the moment, I either suck it up or just don't lay on that side. I have pretty good pain tolerance, it seems. It's odd that one would have more breast pain with the HP infusions, I have never heard that before.
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hapa,
Yes he is a general MO. But I have been so happy with him, and trusted him with my life. So sad I had to change. He was just very stubborn about considering any further treatment that was not the absolute standard followed by 100% of MOs. And became very defensive and dismissive when I challenged him. Made me wonder how many women have had their medical concerns dismissed, or worse, because they pissed some guy off.
On the pain, I have had all those symptoms too. The feeling of having everything stuck together lingered for a long time. I still have it if I don't do serious stretches for a few days. Physical therapy and stretching did wonders.
LaughingGull
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I have pain too. An ache on the right side of my breast, and a sharp shooting pain that comes and goes in the nipple area, right at the incision site. Saw MO today and she examined it, was not concerned at all but said increasing fluid intake may help.
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LaughingGull:
I've been there, not with my MO, but other people. I think a doctor should be able to field questions and discuss things with patients without getting defensive, and I think they should be able to say "I don't know," without feeling any internal shame. I can ask some difficult questions and I don't expect my doctor to have all of
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Princess,
I remember every date ... the diagnosis date, the BMX date, the exchange date ... all of them.
I count everyday as an anniversary of being cancer free.
Vicky
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LaughingGull, rljes, hapa and kat22, thank you all so much for sharing the experiences.
My wife had the lumpectomy, she basically had no issue with the surgery and recovered very well and soon. That was why we were a little confused and concerned if the pain is surgery related. I had a "theory"
for pain right after TCHP or HP infusions: I thought the medications were fighting with the tumor. But apparently it could not apply for the case after surgery as the residual tumor was gone. The NP examined last week as well and she was not concerned, either. We are going to check it again with the MO in 2 weeks.As for Kadcyla and Nerlynx, we had a chance to see another MO (I googled, she is one of the "27 Top Breast Cancer Oncologists", I am not sure if that means a lot
) for second opinion two weeks ago and she would not recommend either of them to my wife. One of the reasons is, the residual tumor was tiny, in low grade and indolent.Thanks again.
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I saw MO this morning. He said my tumor definitely hasn't grown and he thinks it has gotten smaller. He also said it's moveable which I guess is good.
I asked him about using CBD oil and he said it was fine. Feeling a little less anxious now about my next infusion which is Friday.
Hope everyone is having a good day 😁
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Great news, Dawn! Yes, moveable is better than not moveable.
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Coachvicky, totally with you on celebrating all the dates. Each one of them is a milestone and a reminder of how bravely we fought.
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knmtwins - will PM you - have been having a little difficulty the last couple of weeks getting on top of my life - am a little scattered and was out of town. Taxol is not as high a dose as Taxotere, so may be better tolerated, but does have more association with neuropathy.
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Tresjoli2 - congrats on the good results!
LaughingGull - I am glad you found a doctor who is responsive to your questions and needs.
I have questions about post treatment follow up. My MO said that after my year of treatment which ended in December and bloodwork in January, that the next bloodwork would be in a year. Is that normal? I am a bit concerned because I just had a recheck on other breast and they want to check it again in 6 months, so you'd think they would want to do bloodwork then too. Also he put me on iron for anemia 2 months ago. He basically said to go to my GP if I had concerns but he would order iron level if I wanted.
Another question is about timing of reconstruction. I have a date in May for DIEP, but am worried if I am rushing it. The TE doesn't bother me, but because it has metal in it I can't do an MRI if I needed it, so I kind of want it out. On the other hand, the long surgery and recovery is intimidating and I wonder if I should wait. Any words of wisdom?
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Definitely not normal for me, at least. I saw my oncologist every 3 months for about 2 years, and then every 4 months and then evert 6 months. I am almost 10 years out and he has agreed to see me every 6 months instead of 1 year. He said he would be happy to see me every 6 months. I have been off of arimidex for about a year and a half and he is willing to see me. Just love him.
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