Any (IDC) ER+ / PR- / HER2+ people out there?
Comments
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april25, I hope you're feeling better now and the hospital has found a medication. You're having a rocky start but hopefully it will get better on future chemos. It sounds like your SEs started late.
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Thanks Fitz33.
I'm feeling ok since I got rehydrated on Friday. .. it seems I'm still a little low in potassium. .. I'm still figuring out what I can eat by trying the hospital meals.
Unfortunately straight protein won't go down. Dairy and sweet flavors seem ok. Most protein shakes should work.
I still have hair (now 12 days after first chemo). The TCHP seems to have mostly hit my poor GI tract. But I'm sure th hair will go eventually (got a wig waiting).
Such a crazy ride so far...!
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april25, I hope you've been discharged from the hospital and are feel bett
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Fitz33-- I got released right before New Year's Eve... Then I had to get another IV drip at the doctor's office a day after!!! I'm a bit better now that I'm taking in pedialyte to keep the electrolytes up. At least not so dehydrated! But I still have the diarrhea, which is not good as far as being able to start up a new round of chemo. I'm not sure what will happen...
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April25, I am so glad you started up this thread, I have the same profile. I would have piped up sooner but I haven't been around here as much since I finished chemo & radiation ~5 months ago. I also had TCHP also, but mine was adjuvant. They didn't know I was HER2+ until after the lumpectomy (seems the biopsy tissue wasn't representative).
I'm still on Herceptin, with 6 more treatments to go so I can end in April. I can't wait to be done and also to have my port removed! I'm continuing on with Tamoxifen though for 5 years. Btw on Tuesday I'll have my first mammo since all this started. I'm expecting it to be clean but I have to admit I'm a bit nervous.
As far as treatment goes, my experience concurs w/everyone else's, it seems we get the same approach as the triple-positive ladies since our tumors respond to estrogen. However, every now and then I see a paper talking about ER+/PR- tumors, and there do seem to be some differences. I'd like to understand these a little better.
While on TCHP I also had a rough time with the big "D", but it didn't send me to the hospital. It would start up 3-5 days after an infusion and resolve roughly a week before the next chemo infusion, with some help from Imodium. The first few days I would actually have the opposite problem, probably because of the Zofran. Even then, I ate a lot more carbs and a lot less fruit & vegetables than I want to remember. My understanding is that the Perjeta can be a big contributor to the diarrhea. But given the Perjeta success stories it seems it was worth it.
I hope your GI issues improve soon. I'm guessing you're hair is shedding right about now. It's not an easy regimen, but we're all with you.
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CoastalXPat -- I'm glad you could join us! It's interesting to hear about your experiences. And I'm so glad you're on the last lap of treatment! Congrats!
Interesting that you are getting Tamoxifen. I think one of my doctors was recommending 5 years of Femara after chemo, surgery and radiation... (along with a year of Herceptin). I'm not even close to that yet, so I know nothing about the different hormonal/targeted treatments.
Hmmm... I wonder if I should try taking some Zofran? I took some early on, just worried about nausea... but I had very little nausea (just once or twice right after the chemo).
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Did anyone have nail problems? My nails were feeling a bit hot today, but that stopped... just makes me concerned, since I'm only 1 chemo treatment in and I heard it can get much worse as it goes on! Anyone have good suggestions for staving off nail problems? I didn't remember to ice anything during my first chemo, so I think that train has left!
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April, Sorry you've had such a rough go of your first treatment with diarrhea and dehydration! You mentioned nails...my MO recommended using tea tree oil on my nails. I did lose portions of a couple of my nails shortly after chemo ended. I continue to have problems with splitting, peeling and looser nail beds. MO said it could still be from chemo or could be from the Herceptin or both. I only have 2 more Herceptins so I'll be interested to see if the nail problems get better after I'm done. The hot feeling you felt in your nails might be just a chemo side effect but not necessarily mean nail problems. I would get hot fingers the first couple of days after a treatment.
Kendra
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kcat2013 -- Did you try putting tea tree oil on your nails? Do you think it helped? --About how often do you need to do that, do you know?
As far as dehydration goes... I think I'll be better prepared next round. I now know that I should try and drink pedialyte, and also check my blood pressure to make sure it's not too low or my heart-beat too fast (sign of dehydration). And I'll have prescription anti-diarreals plus over-the-counter... At least, I'm hoping all that will make a difference! Of course, sometimes the side-effects are just going to be that bad that I might need to hit the ER/Hospital again... but I hope it won't be so bad next time!!!
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I am currently using a powder that is used to lower cholesterol but has the side benefit of preventing D. The pills for me only attempted to stop D once it started and that was too late for me. I am much more comfortable now. If the pills don't work ask about the prescription powder. Hang in
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waterdog --- I have cholesterol problems, so that's interesting about the powder! I'll have to ask about it. Thanks!
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April, I didn't start using the tea tree oil until maybe round 5 out of 8. I think it might have helped more if I started using it earlier on.
Being fore-armed with more meds and a plan hopefully will make this next treatment more manageable for you!
Kendra
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I had heard about tea tree oil but I wasn't entirely sure how to use it, is it supposed to go under the nailbed or over it? Well I guess I was lucky because I didn't lose any nails, but I did get "tree rings" on them for each round of chemo. They eventually grew out but I still have problems with weak nails that tear or split easily. I think it's the Herceptin because my nails used to be very strong.
By the way, something else to watch for as far as fingers go is neuropathy. I had a hard time at first figuring out if the discomfort at my fingertips was neuropathy or nail problems. Usually that doesn't show up until a couple of rounds however.
Re. tamoxifen, that was a decision I had to think about and research carefully, the alternative being ovarian suppression plus an AI like Femara. I'm in my late 40's. My periods had started getting irregular before all this and I think the chemo put me right into menopause, but we're not completely sure yet. I discussed it a lot with my oncologist, and in the end it was weighing potential joint pain, the start of reduced bone density, and all the other side effects of shutting off estrogen against an extremely low risk of uterine cancer (for my age group - it seems the risk is higher for women in their 60's or older), and that tamoxifen seems to be slightly less effective against recurrence than AI's (check out the recent NEXT and SOFT trials for more info). My particular Dx played a role in the decision, with my MO saying that if my cancer had been more advanced then we would have been having a different discussion.
I bring this up because I think it's worth discussing w/your Dr whether tamoxifen is a better choice than an AI (with or w/o ovarian suppression), especially if you're under 50.
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CoastalXPat -- Someone said Tea Tree oil had plant estrogens, so might not be good for some. I think there's a debate about plant estrogens being good/bad. I'm not up on things at all, though. You should like you've looked into a lot of the latest research--at least as far as the different chemo treatments and targeted treatments go. I'm still totally in the dark. I guess I should do more homework!
Neuropathy... yeah. I can't quite decide if the slight tingling in my fingertips and toes/feet is neuropathy or the chemo/taxotere affecting my nails. So far I don't SEE any difference in my nails, but I've only had 1 cycle, so not enough time has passed, I think. I'm going for my second cycle tomorrow. Not at all looking forward to it, since I had bad enough side effects to land me in the ER/hospital... It just really did a job on my GI system... and pretty much no meds really made much of a dent aside from getting all the IVs! I think I just feel a bit better now because my body is half-way recovered from the 1st chemo! But we'll see, I guess. == Anyway, I was told that B-complex/b\B6 could help with neuropathy. Someone here mentioned L-Glutamine--and I've been taking a bit of that on my own. I suppose I should run it by my MO, though!!!
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april25, I ran all meds past my MO. In fact, I still do that today. They keep watch of any new citamin, mineral, prescription that I take or discontinue or increase/decrease in strength. How has your second chemo been? I hope this one is easier
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My oncologist delayed my second chemo by two days. Then he reduced the amount of Taxotere. And prescribed powdered glutamine mixed with water 3 X a day. Plus take BioK probiotic once a day.
Came through chemo feeling ok. Had my first solid bm today. But I suspect it was mostly due to my body recovering from the first round.
The test will be around the nadir when the D became a big issue... but the reduced taxotere already feel better. Although it would be less than the loading dose already. No side effects so far.
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I guess I get to join this group. I am ER+ PR- HER2+, found out yesterday. I have surgery, mastectomy, today.
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Lizzie28 -- I hope you sail through your surgery and heal up quickly. My thoughts are with you!
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Hi April—(and everyone else!) looks like we have a similar dx, and possibly treatment plan as well. Last week my breast specialist told me that I would do the neoadjuvant chemo with Perjeta. I have my appointment with the oncologist in a couple of hours, so I guess I will know more later this afternoon. Actually I just logged on with my notepad in hand to see if reading would trigger some questions that I might have for my appointment. Like should I be taking pretreatment steroids…tea tree oils (??) etc.
I hope my brain does not shut down and I can focus on what I am being told!! Anyways, thanks for starting this thread and I will be checking in—(I am already obsessed with reading these boards…it's all I want to do right now.) --Lorie
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loriekg -- Sad that you're among us, but glad for your post! I'm kind of obsessive about checking this board too. There is just too much to know, even for the person who researches every thing.
Your oncologist will take care of your overall treatment.. set you up with chemo sessions and tests and other appointments.
The chemo folks will tell you if you need to do things before you get there. Some people get steroids to take before. Some get some in the drips after you arrive. They will make sure you get taken care of and will explain the process..
Tea tree oil... some people use it. Others say it has plant estrogens and is somewhat poisonous. For nails... people are icing them during the taxotere ... and maybe some before and after. Others are just using nail fortifiers... I haven't tried icing. I'll probably at least do the nail strengtheners...
Best wishes for a smooth and successful treatment!!!!
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Made it through surgery and all went well. Sentinal node biopsy (2) looked good and so no more taken. Surgeon said no surprises and margins looked clear. Just awaiting official pathology report and have appointment with oncologist next week. I am feeling much better than I expected post-surgery. Now is time for me to educate myself on the different drug choices for the two targeting therapies and the chemotherapy. -
lizzie28 -- fantastic news! I hope your path report is also as good.
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Welcome to the newbies. I had my annual MRI and it came out clear so I'm very happy about that. It will be 4 years since surgery for me the end of April and 5 years in September since diagnosis. I feel good and want all of you to feel the same. It's not easy to get through chemo and some women have it easier than others but just know it will end. April25, I hope yours is better now and they find the right mix for you for side effects. I didn't have nail problems other than dryness because I could see my nail ridges so much clearer but you can probably get some good advice by searching for nail problems since a lot of women had lifting and other things. For me, I started on a trial so I coudln't do or take anything w/o my MO's okay. I still don't eat a few things that were prohibited in the trial but maybe all chemo patients can't have certain things.
I'm still considered high risk but I can live with that, a mammo and an MRI 6 months apart yearly. They keep a close watch.
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Thanks for sharing your good news and encouragement, Fitz33!! It helps so much sharing stories with others in the same boat, and even better hearing from those that have reached the shore!!! --Lorie
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I'm feeling quite good nine days post surgery. Had my drain removed two days ago and all looks good. Now I am going to focus on good health and fitness leading up to treatments. -
April, Lizzie, glad to hear you're doing better. I should have mentioned one other thing that helped me get through all the digestive issues, which was acupuncture. That said, I think it's best to go to someone if you have some sort of recommendation or referral because the licensing can be inconsistent. In the university where I get my treatment (U of Colorado), they have a department of "integrative medicine," which includes three acupuncturists. I figure they had all been vetted by the university so that made me feel more comfortable. On top of that, my MO gave me a referral, and my insurance covered the treatments (I have a high-option PPO).
The acupuncture really helped me. I remember I was real mess before they started treating me, and I noticed a tremendous difference. I am so grateful for how they were able to help me.
Best of luck to everyone going through treatment -
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Oooh... acupuncture can help with digestive issues??? I'd love to try it. Never have... but I've always heard that it's helped others with really a wide range of issues. I'll have to ask my MO about it.
I switched insurance plans since it's Open Enrollment -- and there's no longer a problem with pre-existing conditions (THANK GOODNESS!!!! I would be so screwed otherwise!), so now I have a really good PPO, too, instead of my all-inclusive HMO (KP) that I'd had for years previously. With cancer, I figured it made sense to switch, since getting a good MO and surgeon, etc., is a bit more important than just making sure general health concerns are maintained. --So I think I have a chance of getting acupuncture covered, at least in part. And there are some good acupuncture guys out there (in Los Angeles). Thanks for the idea, CoastalXPat!
Fitz33 -- Congrats on the 4 year cancer-free milestone! That's always a great thing to hear. Great that you didn't have nail problems, too. Sometimes it's hard to tell if something is common or not since people usually talk about the SEs when they have them, not if they don't...! Good to know not everyone has nails loosening, although I guess if they do, we just have to deal with it...
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Hi April, BCO has a link about acupuncture here:
http://www.breastcancer.org/treatment/comp_med/typ...
And here's a journal article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC266686...
I agree strongly with what BCO says, that you should go to a provider who has experience treating breast cancer patients going through chemo. You want to be sure you get someone who really knows what they're doing.
That said, along with digestive issues, I felt it also helped with mouth sores. I got a bad case first round, but the therapist worked on a point that stimulates saliva production, and that in turn can help to protect your mouth (she said mouth sores are actually harder to treat, but during rounds 2-4 I barely got any. She also recommended sucking on mints or other hard candy to generate saliva). Another thing it helped me with, but it took a few tries, was soothing the sore throat/cough that people seem to get w/Herceptin. And lastly,apparently they can also help w/neuropathy, but I can't say from personal experience whether or not there was clear improvement, it's more of a long term thing.
And one other bit, they say the best time to get acupuncture is the day or the morning before your infusion.
Best of luck!
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