TRIPLE POSITIVE GROUP
Comments
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LG - I have been taking calcium supplements once a day whenever I remember (so about 30-50% of days) and just incorporating calcium-containing things in my diet. I drink my coffee with more soymilk, I eat my oatmeal with soymilk, I use fortified nutmilk instead of coconut milk whenever possible (so like in baking but not in curries). I use blackstrap molasses instead of sugar or honey where I can, I get the tofu that is processed with calcium and if I get non-dairy yogurt I make sure it has calcium as well (most of it does not). Oh, and the OJ with added calcium as a base for my smoothies, which I rarely drink. By no means is any of this on any kind of schedule or routine; it's just small substitutions wherever they can be made. I mean, I only really drink OJ in smoothies and I only drink those maybe twice a month. I am a trail runner but have picked up some road running just out of convenience (I don't have to drive anywhere so I can do it in the mornings in the winter) and I think that might have helped with the bone density in my hips. My spine has seen less improvement; I have been doing very intermittent resistance training with resistance bands. I had been using resistance machines in the gym before it closed for COVID and will do so again when it reopens. I feel like it has been not much of an effort and yet have gotten a very good return. My MO is adamant that I don't need any treatment for osteoporosis regardless because my 10-year fracture risk is low. You can calculate your fracture risk here.
Good luck to everyone trying to get Neratnib. I wish I could have had Kadcyla, as I had residual disease and the benefit of it seems pretty great, but it is what it is so I'll just have to keep my fingers crossed.
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Suggestion for remembering to take your supplements - put it somewhere you always have a routine - on the kitchen table, by the coffee pot, near your tooth brush. Whatever works for you. I take mine as part of my get dressed in the morning routine. If I'm rushing out to golf, I at least put the bottle on the bathroom counter so I will remember when I get back.
I am absolutely amazed how treatment regimes have changed in just 4 years!
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Haha- I finally gave in and got a “pill dispenser” so I could make sure I got my meds/supplements everyday. I joke I’m 35 going on 85, but it has really helped me keep up on everything!!
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Thanks hapa. I have doing more or less the same, but in the last five months very consistently. More cheese, more yogurt, more kiwis, almonds, chia seeds, dried figs, canned sardines...all things calcium. I also got the pill dispenser. For me, it works and it's the only thing that works.
And you are right, hapa, that the real deal for us with residual disease was Kadcyla. Like you, I wish I had been able to get it. I blame my (then-beloved) oncologist, for not being on top of the latest developments, beyond the established standard of care. He should/could have switched me, before I reached the tail end of the H-P course, but instead he dragged his feet until it was too late. Hopefully Herceptin + Perjeta + Neratinib will work for us.
Fab4mom, good that your MO will attend the SABS conferences. But these results have been out since October, and they confirm prior results taken at the 5y mark. Your MO shouldn't need to attend that conference to get the story straight and make up his/her mind one way or another. Not saying this makes sense for you, since you are already getting Kadcyla. But it just pisses me off when doctors are slow to keep up, then procrastinate further when you ask for an informed opinion about developments they ignore. Sorry for the venting.
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Reading these posts about Doctors not keeping up on treatments makes my 7 hour drive to Mayo seem like a wise choice. They come provide the treatment plan for my breast clinic and oncologist who is only 2 1/2 hours away. I did surgery at Mayo because #1 I love my breast surgeon and #2 I assume the Doctors here are a cut above to be employed here. So far so good.
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I had to go ahead and get a pill box too, even though alot of my daily meds are just supplements or pepcid. I just couldn't keep it straight sometimes if I took my pills or not. I also feel like I'm going on 85, but it's been so helpful. I fill it each Sunday morning and I'm good to go all week. Also helps me keep on top of my tamoxifen so I don't run out.
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Hello everyone, new to the forum. I was diagnosed with 1.8cm TP with SN negative BC in Nov 2020. I had a lumpectomy and am going to start chemo plus herceptin hopefully soon. The confusion started with two oncologists indicating two different chemo regiments: TCH or TH. I will receive full year of herceptin, radiation and hormone blocker meds for 10 years. The oncologist recommending TCH indicates she prefers this for me because I'm 43 and the size was on the larger side of “small". Does anyone have experience or any info that could help me. All of this is stressful and info overload but this another level of stress. Thank you
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Hi!
In recent years, oncologists have been willing to prescribe Taxol + Herceptin for small HER2+ tumors. I did TH, (along with Adriamycin + Cytoxan), and I found it to be a very doable chemo regimen. I did my TH for twelve straight weeks, and found it to be easier than A + C. My chemo brain went away, and my worst side effect was diarrhea, which I managed with Imodium. TH is also associated with peripheral neuropathy. I had a little neuropathy in my fingertips.
Taxotere + Carboplatin + Herceptin is a tried and true regimen for HER2+, but it does pack more of a wallop. That's why there's typically a 1-2 week break between each dose. TCH can cause gastrointestinal distress (nausea, heartburn, diarrhea, constipation, etc.). Also, there's a very very very small percentage of women who do TCH and suffer from permanent hair loss.
I did AC + TH because my tumor was big (5 cm.+), I had a compromised node, and my oncologist said that is was replicating like kudzu. That's an aggressive regimen, but I had an aggressive cancer. I was 46 when I was diagnosed, and I'm not sorry I did six months of chemo.
((Hugs))
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pbtriple - there are a few members who post on this thread regularly who had node negative tumors under 2cm and received Taxol and Herceptin only. Generally it is a regimen that is now given adjuvently (post-surgically) although a number of years ago almost all regimens were adjuvent. Here is a link to the Dana Farber study of this regimen and also the 7 year follow up. For patients who fit the subset for applicability this is very effective and has the potential for fewer side effects because it is a single chemotherapeutic agent. Hope this is helpful and if you look at the signature lines below member posts you may see someone on this thread who has done TH only - might be worth a private message to them, and there is also a thread about Taxol that I will link as well - the link will start you on the last page of the thread, so you can always read back.
https://www.nejm.org/doi/full/10.1056/nejmoa140628...
https://pubmed.ncbi.nlm.nih.gov/30939096/
https://community.breastcancer.org/forum/69/topics...
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Thank you specialK and ElaineThere!
Any tips on how to prevent neuropathy? I have read using ice packs on hands and feet during chemo helps but wasn’t sure if that compromises the chemo from reaching the hands and feet.
Thank you again. As scary as this is, it’s nice to know there are others who u set stand what I’m going through
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ice chips for mouth sores, ice mitts and gloves (or ice packs) for your hands and feet. B6 and Alpha Lipoic Acid and/or Glutamine for Neuropathy but, run everything by your MO ro make sure they are OK with what you're taking.
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Hi everyone,
I posted this question in the December chemo group as I get my first infusion tomorrow but you all might have a better answer. My infusion is scheduled for 30 minutes (TCH). I'm wondering if that was an error as from what I've read, it generally takes 3 hours. No complaints if it really is only 30 minutes but I like going in to new things as prepared as possible.
Thanks for any responses and advice you may have for me.
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Yup, it will take several hours, especially as it is your first time. You'll get pumped full of pre-meds as well as the Taxol and Herceptin. Plan accordingly. Bring a book or a device for entertainment. I used to work in the chemo room on a laptop, but I also had a friend visit during the infusions, which was fun. Benadryl is typically given before Taxol, so some patients just sleep through it all. Good luck!
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PB: Mets to hands and feet are nearly unheard of, so oncologists are generally ok with icing. The scalp icing I personally would be more worried about. I didn't do either because I was always FREEZING in the infusion suite and found the whole experience unpleasant enough.
MsMurphy: I am guessing that something was lost in translation. The first infusion especially they run everything slowly and have extra long observation between each. I had TCHP so the whole thing was a whole day once you add in getting accessed and waiting for labs to come back and all. Take a bag packed with a warm shawl (and ask for heated blankets! Better still -- find out where the blanket warmer is!), all kinds of snacks and drinks because you might prefer your own to what they offer, a lightweight variety of stuff to do when you are kind of out of it (you will learn what you can and want to do. I got a bunch of stuff like adult coloring books and downloaded books, but ended up at most watching Great British Bake Offs and napping) Wear super comfy clothes too. I also like slip-off shoes so it was easy to put them back on when I wanted to pace or had to go pee (it is a lot of fluid they pump into you). OH! I also found that the flushes (if you have a port) and the anti-nausea meds gave me a horrible taste in my mouth, so I brought lemon drops, which were great. Jolly Ranchers or gum or whatever you like that has a nice strong flavor.
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Thank you so much Elaine and Yeslama for the quick and very good responses. I have my chemo bag packed and ready as I had a suspicion that was an error.
One more question for my triple positive sisters. Do any of you have endometriosis? I have taken my BC continously for about 10-15 years as no periods equal relatively little pain compared to the chronic daily pain I had before. I haven't been told to stop it yet but I'm nervous about being on it and scared of going off it. Last thing I need is pain on top of whatever side effects I have from the chemo. I plan to grill my onco tomorrow on this but was curious how others may have dealt with it.
Love to you all.
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I suspect you won't have to worry about periods for a while (at least not with TCHP! not sure about THP). But absolutely ask your oncologist about them.
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Thank you YeslamaDragon and Morrigan_2575.
MsMurphy- best for your first infusion tomorrow. I should be starting mine in a couple of weeks. If you have any tips for the chemo bag, would be appreciated. I haven’t had my chemo intro meeting yet so feel very unaware. We seem to have similar Dx. Did your MO discuss TH as an option for you vs TCH. Both were recommended for me and I’m leaning towards TCH
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Hi pbtrible! I do feel like I'm going into chemo a bit blindly too despite meeting the oncologist twice. It's so overwhelming to grasp it all.The originally plan was for me to do just TH weekly for a month and then herceptin for a year but by the time they finally removed the tumor (mastectomy followed by lumpectomy as it was missed the first time around), it was larger than initially thought so my oncologist changed me to TCH for 6 cycles. Fingers crossed everything goes well and I'll keep you updated.
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I’m 8+ weeks post chemo (TCHP), 1 month post op mastectomy and started letrozole 10 days ago. I’m having one of those days where I’m not feeling very good. I’m able to function, but am deal with a variety of nagging side effects, so it’s nothing serious. I don’t start HP until after the first of the year. Is this my new normal?
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Do I understand that your infusions stopped completely after 6 cycles of TCHP?
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Yes. No more treatments until January when I start herceptin and perjeta. They wanted me to feel better before surgery, so I had 5 weeks Is that not normal?
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Nsbrown54...I finished my 6 round of tch (MO took the prejeta out after 3 rounds) on October 29. I asked my MO if we could hold off the herceptin until after my surgery and she was ok with it. I have my first infusion on Dec 21 which will be almost 8 weeks since my last one. I have seen studies that show 6 rounds of herceptin is as beneficial as 1 year. I plan to take the studies to my appointment on Monday.
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Interesting. I continued my every 3 week HP infusions until after my surgical pathology came back and showed I didn't have PCR< then the Perjata was dropped (I still don't entirely understand why?) and I continued getting Herceptin every 3 weeks until radiation was done, then started Kadcyla. So I never had a break in infusions.
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nsbrown - the convergence of post-chemo and surgery, and the start of anti-hormonal therapy, are surely contributing to you not feeling as good as you would like, or having days when fatigue gets in front of you, but time should help. Some people take a little while to adjust to anti-hormonal therapy, and it also takes some time for anesthetic to work its way out of your system, generally a week for every hour under anesthesia. Recovery from chemo, as evidenced by the return of your CBC values to normal, can takes a few months at a minimum. Do you know what your hemoglobin level is? If it is low - which is normal at this point - it can contribute to fatigue. On the targeted therapy front, most do continue with targeted therapy on schedule without any delays, but your docs are doing what is right for your individual situation.
iamloved - are you sure it was not a 6 month course rather than a 6 round course? The really short FINHER study was only 9 weeks, but I don't think you will find a US MO who would shorten to that voluntarily, but it is potentially decent news for anyone who has to discontinue for cardio-toxity reasons.
https://pubmed.ncbi.nlm.nih.gov/27875516/
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@YesIamaDragon - I didn't get a break either I finished TCHP 5/20, had HP 6/10, surgery on 6/19 started Kadcyla on 7/6.
I started Tamoxifen and Radiation in August. It's been pretty much go go go. My MO had me doing Kadcyla, Rads and Hormone Therapy all at the same time. I see other Docs holding off Kadcyla and Hormone Treatment until after Radiation.
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Thank you for the response SpecialK. My hemoglobin, potassium and magnesium are all low, but have been improving. I seem to forget the obvious, that my blood counts contribute to my fatigue. I assumed it was the letrozole. During chemo, especially the last 3 treatments, I required extra fluids, extra magnesium and potassium, and a blood transfusion
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pbtripplepositive - sorry I didn't see your post until today. I did just TH. Four years ago it was treatment of choice for small tumors and no lymph node involvement. I'd be happy to text more if that's what you decided to do. You are a LOT younger than I am and THC is a more aggressive treatment plan which may be why one of your MO recommended it.
No one in my center iced. I had painful neuropathy starting about infusion 6 and stopped after 8 with MO's support. She said if I had lymph node involvement she would have pushed me harder to continue the full 12 weeks of Taxol. Early on, my biggest problem was regulating the constipation/diaherra cycle but actually got that under control too.
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Onco decided I should stick with HP instead of switching to Kadcyla because there’s “no demonstrated benefit” in people with my characteristics (technical pCR with residual DCIS)—I know this is how science works, but it annoys me so much. No demonstrated benefit bc they haven’t done the trial...but one could certainly ASSUME a benefit based on the Katharine trial! I know, I know, that’s not how this works, but it’s so frustrating (and sometimes scary) to hear news of these amazing new therapies that are still in the nascent stages of research and from which I will not be able to benefit. I mean, it’s also wonderful for the future of the field and for future women...but I just want ALL THE DRUGS RIGHT NOW!
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Anna - if you had PCR then your risk of recurrence is so low that Kadcyla isn't going to do much, if anything at all. IIRC your risk of recurrence is maybe 5%. You can't get it down to zero.
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Anna,
I missed out on Nerlynx because it came out too late for me. I didn't mind; many on Nerlynx get diarrhea (though it can be controlled). By the time Nerlynx rolled around, I was OK with being done with active treatment and was more focused on getting through hormonal therapy.
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