TRIPLE POSITIVE GROUP
Comments
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Hapa - thanks. I have not started chemo yet (next week sometime) but I just got the doctor's orders and there is a steroid in there. Someone else had recommended trying to avoid them so I was curious. I have my nurse phone call this morning so I'm going to ask about it. Looks like you have the same DX as me - can you share why you did radiation and how that was? And how you are doing now? Thank you!
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The premeds (steroid, Benadryl, anti-nausea, antacid) worked well for me. Some treatment centers wean you off or cut back dosage if you haven't had an allergic response but mine did not. I know some people have sleep issues, but I took Zofran for a few days after each treatment, not because I was nauseated but because it makes you drowsy. I didn't have a hard time sleeping. (FWIW--I kinda liked the bump in energy from the steroid. :-) )
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wahoomama - often the steroids are prescribed before, during, and after. They are given mainly to prevent allergic reaction. My MO only initially gave steroids during and after, until I had an allergic reaction about half way through and then he added them in before as well. I am one who actually liked them - I am not a great sleeper, don't require much sleep, so staying awake doesn't bother me. I liked the energy boost because it allowed me to pay bills, grocery shop, cook ahead, clean, catch up on laundry, get clean sheets on the bed, and get ready for the few days after each round that I would not feel up to par. That way I felt no pressure to do anything if I didn't feel like it. I also had several surgeries before starting chemo, so I was a bit behind the 8-ball energy-wise, so any help was appreciated. I was naughty and divided my last day dose in two and took the half-dose over two days to avoid the "falling off the cliff" feeling when you abruptly stop the steroids. I eased off. Did I tell my MO I did this? Nope. Some MO have a similar viewpoint on Neulasta or Neupogen to boost white cells during chemo. They may wait to see if your WBC tanks and then give the booster rather than giving it prophylactically. The boosters come with their own set of side effects for some, so waiting to see if you need them can be beneficial.
On the subject of things to do to prepare - I got a nice wig similar to my own hairstyle and took it to my hairdresser for some customization, a couple of scarves from the link below, cut my long hair and had a hairpiece made to wear under ball caps and fedoras from a company linked below. The hairpiece was made after I mailed the hair to the shop, and they mailed the hairpiece back to me made form my own hair. It was the single best thing I purchased. I used regular bandanas in the house, but when I left the house I wore either the hairpiece or my wig - I was just someone who didn't feel comfortable going out in a scarf or bald - but, to each their own - you do whatever you feel comfortable with. My husband got me a lamp extension so I didn't have to reach as far to turn the bedside lamp on/off, linked below. I removed the acrylic from my nails so I could better care for them and try to avoid lifting. I iced hands and feet with bags of frozen peas brought in a cooler from home to help with neuropathy, but more for nail lifting. I took a 100mg B6 capsule daily and also used 30g of L-Glutamine (3 doses of 10g each, dissolved in a cold, non-acidic drink), and also Acetyl L-Carnitine to prevent neuropathy. Always check with your MO about supplements, some will not approve any, some will approve some. I painted my very short nails with a coat of clear hardener, and then a dark opaque color the night before chemo. With taxanes the light penetration is thought to possibly exacerbate lifting. I removed that polish the next day after infusion and painted on a coat of hardener each day for seven days. I then removed all, and started over with that weekly process until it was time for the next infusion. With the icing I did not have discolored or ridged nails, or lifting, except for one nail, which I had injured. I did use Aquaphor - everywhere. I slept with it on hands and feet with cotton gloves and socks to try to keep my skin moisturized, with extra at the corners of my nails. I put it on my face, especially around the corners of my eyes and my nose. Taxotere can cause involuntary tears, which are salty and caused irritation for me. Soft moisturizing wipes were also my friend, all those parts get dry... I did take Claritin (loratadine 10mg) before Neulasta to prevent bone pain. The injection occurs 24 hours after infusion, either in the form of an injection at the center, or the On-Body type (I suspect this will be used, if possible, to avoid coming in to receive an injection) to keep WBC at a level to avoid opportunistic infection - especially important now. It is important to take the Claritin BEFORE the injection, if you take it afterward it is less effective. I took it for several days after Neulasta, and it is important because taxanes also cause bone pain for some, so anything you can do to prevent it is good. I never had issues a couple of Tylenol and a warm bath couldn't eradicate. I used printed side effect charts from the American Cancer Society, linked below, to chart what was going on after each infusion. It kept me from having to remember, and I found that each infusion was slightly different. I brought them with me and could discuss and pinpoint any issues with my MO so we were all on the same page. I know there are some cell phone apps that people can also use. If you want help some use Meal Train to organize meals brought for your family, linked below. I did not find that I needed any help with this, I was well enough to stock my house with groceries and cook, and could cook ahead and freeze meals for my family by myself. Some people will ask what they can do for you - I received a lot of button front pajamas, some books, flowers, etc., but I know some people appreciated receiving help with transportation and gift cards for take-out. If you don't already have it a gift of Netflix would be helpful if someone asks what you would like. I had a hard time reading a book, but found that magazines were doable - short articles were easier than an ongoing story. Weirdly, I binged The Sopranos - not exactly uplifting, but it was engrossing enough to hold my attention. I also played solitaire online until I won, then played several games of MahJongg until I won - I felt this helped with focus. I did this even on my worst days as a matter of principle. I watched baby animal videos too, and also checked DamnYouAutoCorrect - it always made me laugh, although some may find it inappropriate. Some also like to join Caring Bridge to keep friends/family up to date on how things are going. I didn't do this and my husband usually kept people updated. I preferred to text with friends - that way I could do so when it suited rather than talking on the phone. It was ok if I called friends, but I didn't get calls from them as much, as they were afraid of waking or disturbing me. This worked out well, and don't be afraid to state your preferences. I think it can be difficult to say the same thing over and over reassuring people you are ok. I also Skyped with my in-laws who didn't live near, and my son who was away at college in another state, which was nice since they could see me and see that I was ok. Facetime would do the same thing if you have it. I found that each round of chemo was different. First one I felt terrible, likely due to the proximity from the last surgery and also because of the loading doses. I had a wicked headache, compounded by sensitivity to Zofran, I get a headache from it - which is common - and it does not work for me. I was given three at home meds for nausea, to use in succession. If the first one didn't work, immediately move to the second, etc. My second line med was Compazine and it worked beautifully. The third line was Ativan, but I never needed it. I started with these meds the night of chemo infusion, it is easier to prevent nausea rather than treat it once it happens - like with pain, you never want to chase nausea - it is much harder to treat if you wait for it to happen. I took these meds for about the same amount of time as the steroids - roughly 48 hours, then was able to stop until the next round. My second and third rounds were pretty mild, no real problems other than some GI distress, and the solution was to stay home - never resorted to meds as it was not a severe problem. This lasted for about the first week to ten days, then the second ten days before the next round were pretty normal - I went out to lunch, ran errands, etc. In the current situation I am guessing that won't be happening for anyone, which is really unfortunate because it helps to feel normal. Rounds four and five were harder, I was more fatigued, and was experiencing neuropathy by then. I expected round six to be bad, but it wasn't at all, I did not have any GI issues - maybe I had adapted, who knows?
Scarves - https://4women.com/shop/
Hairpiece - https://chemodiva.com/
Lamp extension - https://www.homedepot.com/p/HDX-15-ft-16-2-Indoor-Switch-Extension-Cord-White-KAB-1P-KAB-18/300726073
Chemotherapy Side Effects Worksheet - https://www.cancer.org/content/dam/cancer-org/cancer-control/en/booklets-flyers/phm-tracking-tools.pdf
Meal Train - https://www.mealtrain.com/
Caring Bridge - https://www.caringbridge.org/
ACK!! I seem to have written a small book!!! Hope this is helpful.
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wahoomama - I did radiation because I had multicentric tumors, still had residual cancer after neoadjuvant chemo, and still had three positive lymph nodes. Plus, I was under 45 which apparently ups your risk as well (being under 40 apparently ups it more). I go back and forth over whether that was the right decision, it seemed like it would be redundant if you already had BMX and ALND, I mean, wtf were they irradiating at that point? But when I have doubts I go back to this article, which shows that locoregional recurrence post mastectomy is actually a lot higher than I would have thought. Let me just warn you that the mortality numbers in this study are frightening, but of course these records go back a really long way so they aren't particularly current, especially for Her2+ women:
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60488-8/fulltext#fig2
Those numbers are in line with what my RO told me, which was that my risk would go from 20-22% to 3-6% for locoregional recurrence. I also saw an article that said about 1 in 4 RL recurrences resulted in mets. But then my risk of mets is supposedly higher than my risk of RL recurrence anyway, so I'm not sure it was worth the minor improvement in my chances.
As for how it was: I hated rads. I mean, it really zapped my energy. I worked out all the way through chemo and felt like it wasn't that bad, but rads really did me in. I had to go on leave from my job and all I did was eat, sleep, and go to my appointments. I don't know why it was so exhausting for me. It also kind of ruined my reconstruction, which was pre-pec implants, and that is the biggest reason for my rads regret. Revisions and fat grafting haven't done much to fix it. Not sure if I'm going to do any more about it. If you're planning diep or no recon, then obviously this wouldn't be a concern for you. The rads burns were not that big of a deal, the long term SEs of additional scar tissue are what I didn't like about it.
Re: steroids, when I was on them I ate like a fat person (which I am most definitely not). There were times when I'd leave work to get fast food twice before lunch. I went through the Taco Bell drive through two hours apart one morning and the cashier had such a wtf look on her face my second trip through.
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hapa - LOL on the Taco Bell drive thru story! I love it
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@Hapa - That's interesting about the Rads impact. Mostly everyone I've talked to said Rads was much easier to handle than Chemo.
We really do all handle things differently. I have plenty of energy on Chemo, save 4-5 low days but, I have no idea how the next step will treat me.
The one thing I've never worried about is the surgery (I've had surgery before I know how I tolerate it) so I'm waiting for it to be the worst because irony loves me 😁😁😁😁😁😁
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Sure, what exactly would you like to know? I had neoadjuvant chemo last year from August to November, and did many things on my own to try and help with side effects for this and other treatments. I had a single mastectomy in December, and am doing radiation treatments currently. Is there specific information you're looking for?
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hapa your Taco Bell story is hilarious
I also had radiation because of residual cancer in both breast and nodes after chemo. Radiation was easy for me. All during radiation, I was working full time and exercising regularly, I was out and about, I traveled, I attended parties. I was maybe 80% normal (post-cancer "normal", not pre-cancer normal); I waited and waited for the radiation fatigue to hit me but it never did. During cheme I would say I was 50% normal (again, post-cancer "normal")
Steroids helped me get through the first couple of days post-chemo so I was fine with them.
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Hapa and LaughingGull - thanks for all that info! Port goes in on Wednesday and I start chemo on Friday.
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Wahoomama the g.i. side effects from Perjeta were too much for me, mostly the horrible nonstop diarrhea that no amount of meds or IV hydration helped. Diarrhea is a common side perjeta side effect, and some people are able to get ahead of it with imodium, but not me. I toughed it out for 4 cycles, but I was miserable, and it was actually my MO that pulled the plug on it because I was so badly dehydrated and afraid to eat. My last 2 chemo cycles were vastly easier without it! But again, chemo is different for everyone (and chemo was really rough on me in general).
I was a fan of the steroids! They did eventually give me an extra 15 lbs of bloat, but they didn't give me insomnia too badly if I took took my evening dose by 4 pm. They gave me a good appetite and gave me energy during the 3 days I took them (day before, of, and after infusion), and I wouldn't chemo crash til the first day off them.
The reason radiation was recommended was my positive lymph node status and large main tumor, which I believe would've warranted radiation even if I had a pCR, but I had residual cancer at surgery (including 2 nodes) which sealed the deal. For me, radiation has been the easiest part by FAR. I'm at dose 20 of 30 (25 on chest wall & lymph nodes + 5 "boosts" focused just on scar line), and I'm pink/tan like a sunburn, a little tender and itchy, but it's not bad, and hardly any fatigue, nothing like chemo! I did pink up right away and was nervous it would be hard on me, but the things that really seem to be helping are taking turmeric daily (highly anti inflammatory), topical use of vinegar (in the shower, then rinsed- it helps turn sunburns to tans and has done similar with my chest) and manuka honey mixed in with lotion.
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Wahoomama - I loved the steriods. I asked for more - I got so much accomplished. But my metabolism is diff than most. 2nd round of chemo I went on a shopping spree and bought new Den furniture. Cleaned out my front ditch. Loved it. Down hill after that, but nice while it lasted.
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HeartShapedBox - thank you! This is great information.
Rljes - I would LOVE to know why you chose no reconstruction. I'm considering that also, but would love some real life input on that decision!
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My next-door neighbor is triple positive and made it through 4 doses of TCHP before her oncologist shut it down because of neuropathy in her hands and feet. She just had her surgery and is waiting for her pathology report. She is worried about going back on Herceptin alone because TCHP already lowered her ejection fraction. She is also BRAC2+. Has anyone heard of HER2+ patients getting a lower dose of Herceptin before?
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Elaine Therese - Usually if the LVEF drops, they'll stop Herceptin. Usually you can restart without problems when your LVEF comes back up, but some women stop and start more than once. I have not heard of lowering the dose. Someone on here stopped and started a couple times, Jstarling maybe? But she finished if I remember correctly.
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ET - Blownaway I think also stopped and started and due to a previously diagnosed cardiac condition was put on an ace inhibitor and beta blocker. I have seen some people here take those meds during Herceptin somewhat preventively if their LVEF drops early. That might allow continued Herceptin, especially since the TC had to be dropped.I would recommend your neighbor find a cardiologist who is familiar with Herceptin induced low LVEF.
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ElaineThere, I had several (4) fits and starts with Herceptin. My infraction rate would go way down and in about a month it would be back enough for another infusion. I did finally get the full eighteen doses with no apparent effects on my heart. I don’t feel any different and am able to walk the same as ever! So don’t give up hope
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Hi Ladies,
Been gone for awhile to mentally get back to a good state. I am there.
Since my last post so much has gone on.
They found some "lumps" by my left implant that showed up as "not normal " so off I go to start all the testing again. Thankfully it is scar tissue. Right now I am currently seeing a neurosurgeon back pain. Hope it is just a previous surgery acting up.
My husband has decided he no longer is attracted to me and can't see himself staying with someone who will always have the potential for medical problems. Nice huh... so we are separated.
While separated I have met someone who is 19 years younger but we get along great. So..
Been seeing a Cancer Therapist and a regular therapist. Who knew they had cancer therapist? I didn't. Things are going great for once. I feel happy. I don't feel like the end is near. My children have been a huge support.
I am ready to stay involved. Lol
How is everyone holding up?
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shela I am so sorry to hear about your marital woes but you sound like you're mentally in a good place. Good for you!! All is good <if quiet> here in Central Virginia. I'm grateful that I can still "see" my kids thanks to modern technology. I think I'm about to be told my annual mammo that was scheduled later this month is going to be postponed. I was *really* looking forward to having that behind me. I was also supposed to get a bone scan, and check in with my MO and RO. I was supposed to leave for a trip to visit my CA kids right after all of that, but of course I've had to cancel. We're having a lovely spring--unfortunate that so many people are stuck inside. I'm hoping we get through the next few weeks and then start to see things turn around. In the meantime, I am thankful for electricity, and telephones, and well-stocked wine shelves, and the internet. Stay safe, everyone.
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shela - so sorry you had to go through this with your spouse but happy that you have found someone else to share time with and that you are doing better mentally.
That mental game is hard but if you can get on top of it, the sun is shining!
I hope you all have a great weekend
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Shela,
Glad to hear that you're feeling so positive after all you've been through. Cancer is the gift that keeps on giving! Here's to even better days ahead.
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Ingerp - Just had to note that you are from Charlottesville - the BEST place on earth! UVA grad here - it's my happy place.
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<Wahoomama—don’t tell anybody!! ;-) No really—I went to UVAa billion years ago but my husband’s job brought us back about 25 years ago. It’s been a lovely place to raise a family.>
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Ingerp - we were probably there the same "million" years ago! Glad you have loved it. It holds a special place in my heart.
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Happy Easter ❤🐇
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Happy Easter to all you amazing women!
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shelabela - Happy Easter to you too! Good to see you, sorry about your life drama, but glad things are working out with someone who values you for the awesome person you are!
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Hi there,
I’m in this site not for myself but for my mother.
My mum has been diagnosed with triple positive breast cancer. Positive nodes showed up on the Cat scan both under the arm and in the stomach!!!!
The doctor has stated that she doesn’t think this is metastatic because it wouldn’t normally take this pathway.
Does anybody know what she meant by this? I assumed she meant that breast cancer goes to bones first usually???
My mums bone scan came back clear.
I’m feeling so sorry for her just now. She’s 80 and very scared by this tummy lymph node thing.
My mum is getting 12 weeks of paclitaxol with Perjeta and Herceptin. They are also giving her a bisphosphate every six months too.
i don’t know how many nodes are involved in armpit. We will find out after operation. Her lump was 2cm.
I’m worried they’re going to come back and say she is metastatic.
Doll
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Doll - they can't know if the nodes that lit up on the CT are breast cancer metastasis unless they do a biopsy. That would be a really odd way for it to spread. The nodes could be any number of things, an infection even. If your mom is concerned about them, which is understandable, she should get a second opinion from another doctor.
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Thank you Hapa,
That’s pretty much what our oncologist said. She said that the six week scan would tell them more. I think if the nodes in the armpit go, but don’t go from stomach, then that is suggesting that they are not cancer???? I THINK that was what she said. It was some sort of process of elimination that would help her make her decision.
We start chemo in a week. I’m so glad to be back on this board and have the support and knowledge that is around here.
I’m the UK and we tend to never ask for second opinions. But I think mum really likes her oncologist. So I guess that’s good.
Can anybody tell me the sort of success that can be achieved with both perjeta and herceptin.
Has anybody done Herceptin without a port?
Doll
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Welcome Dolly. I'm sorry you and your mom are going through this, especially now.
I'm on TCHP (4/6 completed) and my MO told me 99% of patients respond to this treatment it's just a matter of how much.
Over the weekend I was reading stories on a Breast Cancer Survivor FB page I belong to. I came across a young woman (30s or early 40s) diagnosed with Stage IV BC, she had several lumps in her breast, 3 lesions in her liver and a couple of lymph nodes IIRC. She was on TCHP, after treatment #2, two of the lesions in her liver were gone and the 3rd had shrunk drastically. By the end of her treatment she was NEDS which is pretty amazing all things considered.
I'm not saying this is something we can all expect she seemed to respond really well to TCHP and, has been on HP for the last 3 years while remaining NEDS. However, it does give me hope that HP will do the job.
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