TRIPLE POSITIVE GROUP
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smichaels - I used Aquaphor up my nose, on hands and feet, under my eyes (taxotere can cause irritation from involuntary tears), and pretty much everywhere.
Many struggle with the first infusion because you have received loading doses, which are larger than the subsequent ones will be. I definitely did better with infusions 2 & 3, then some cumulative fatigue with 4 & 5, then miraculously infusion 6 didn't even have any Big D - yay! If your D becomes too much your MO can prescribe Rx meds like lomotil or loperamide. I found that a BRAT diet helped, but it includes banana, so maybe just bland stuff?
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smichaels - I had the bloody nose at first too. It resolved by Round 3. But I used saline spray daily, and then coconut oil at night. By Round 2, I started with the saline ahead of time to make sure I was nice and moist to start up there. DEFINITELY ask the MO about lomotil. I have that on hand as well. I have REALLY struggled with the D - so much so that for Round 5 (which was last week) they cut my taxotere dose by 20%. So far, fingers crossed, it's helping. I slightly laughed about your hemorrhoids - and raised my hand in solidarity! #bigbabies
Special K - I'm hoping I have your Round 6 experience - I'm SO over the side effects. One more time, one more time......
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SpecialK: I have been doing the l-glutamine and B vitamins and Folate, and actually have alpha-lipoic acid on todays list for husband's bi-weekly grocery/pharmacy run. He is also picking up more Emla so I can get some sleep AND numb up the boob before my mammogram next week
But right now I am in agony (though slept well last night! Hooray!)Everything tasted disgusting when i was doing TCHP. We actually got one of those water carbonaters and that helped. A squirt of juice oreven just straight up it was easier to drink than plain water (and our well has TASTY water)
Someone above asked about HP vs Kadcyla (sorry somehow I JUST saw it and now can't find it!) As I get further from the H my drippy nose has MUCH improved. THe dry mouth on Kadcyla is INCREDIBLE though. Still with constipation, though not nearly as bad as on the TCHP*. And my appetite on the kadcyla is terrible -- worse than even on the TCHP.
* TRIGGER WARNING: Do not read if at all squeamish: On TCHP, very first cycle, they warned me about the diarrhea from perjata. Told me the first few days I would be constipated but not to be aggressive about a bowel regimen for constipation because after the first few days the diarrhea would be really bad.
So long about day six I was in AGONY. Unfortunately when I finally pooped it was a single 5-pound bowling ball of a sh!t. Which left me with not only horrific hemorrhoids but alos with an anal fissure. OUCH!
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wahoo - I kept waiting for the Big D after #6 and was shocked that it didn't happen. If I hadn't been so tired - I had five surgeries prior to chemo and my hemoglobin was pretty tanked from chemo - I would have been dancing in the streets, lol! My wish for everyone is to have no D on their final infusion! Yay for heading into that final one - you will be so happy to be done with that part.
yeslama - it took a while for my neuropathy to dissipate so I am hopeful yours will improve with time - I know it is aggravating. I also took Acetyl L-Carnitine, and I know that there was a study that indicated it worsened neuropathy for diabetics so some oncologists stopped endorsing it, but the study doses were huge! It is something to consider trying but I would just take the recommended amount on the label - my understanding is that the body can't process more than that anyway so it is pointless to take more. Also, I had a fissure - but mine was caused by irritation from the Big D - I had lots of cracking from dryness, on my fingertips and feet, and corners of my eyes. My BFF currently has a fissure - not cancer related - and her primary care specifically recommended Aveeno 24 hour moisturizer and it has been helpful. She had tried Aquaphor and Neosporin, but the Aveeno has been better.
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What are the suggestions on the food intake after the chemo, but still on the Herceptin for the remainder of the year? Are we supposed to follow some of this or is it just while receiving the chemo? A Burger does sound really good tonight! Thanks for that. SpecialK, thanks for the sodeliciousdairyree link. I have been craving sweet too. There seems to be so many rules, so thanks for your comments about eating whatever makes you happy right now. It really helps. Must find a good burger now!
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pjal - getting through chemo however you can is what is important. I know there are folks that can fast and undertake some dietary restrictions during chemo, which is great, but not everyone can tolerate that. As I’ve said previously I had five surgeries prior to starting TCH so I was behind the 8-ball, and I only had enough energy to eat as sensibly as I could with an emphasis on protein the last 7-10 days before the next infusion. If your RBC and hemoglobin have dropped throughout chemo, which is common and normal when receiving chemo, it can take quite a while for them to recover. One of the ways to encourage new blood cells is to continue the ingestion of protein. I would advise continuing to do that until you see your CBC results resume normal ranges, if they are currently low. I don’t think there is necessarily any particular thing to eat post-chemo, but one thing to consider is that you will likely be starting an anti-hormonal during Herceptin, shortly after chemo and/or radiation ends. Many experience some joint pain on these meds, and I personally found that cleaning up my diet helped me not only lose weight gained from the steroids and anti-hormonals, but it also lessened my joint pain. I ate more organic and plant based with lean and clean protein, cut dairy and sugar, along with a few other things. Also exercise helped - the more I moved the better I felt.
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Thanks SpecialK. That's helpful information. My red blood cells are down and once they started going down, I added a lot of protein. I ate a lot of red meat at first, but made me feel a bit nauseas so I have been eating chicken breast several times a day along with cheese and yogurt. The RBC is beginning to come up a bit, but you're right, it is slow. I will begin the anti-hormonal after the chemo. I have heard that there are many SE so anything that I can do to help with that will be a benefit. I have heard to cut sugar, but why cut dairy? Thanks again for the information.
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I am triple positive, Stage 1. Had chemo, then lumpectomy. I had a total pathological response to the chemo. Now I am debating about whether I need to follow up with radiation. My radiation oncologist indicates there is not any data on survival rates for small tumors with no lymph node involvement if radiation is not done. I really had some issues with neuropathy with taxol, and had read some things about radiation possibly contributing to that. I am frankly more scared of neuropathy than a recurrence. I am 72, and before this wasn't even on any medication. Has anyone any comments about their experience skipping radiation? Thanks.
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pjal - I was struggling trying to lose weight gained after treatment and despite brisk five mile walks daily and eating 1500 calories a day of sensible food I lost zero pounds. My former boss started an elimination diet (no corn, soy, sugar, dairy, peanuts, gluten and eggs) to try to improve hand pain and stiffness that was affecting her work and ability to sleep. As a by-product she lost 20 lbs. and could make a fist within a week of starting. So, I decided to try it and lost 22 lbs over six months with no exercise due to three additional surgeries over that time. The theory behind this way of eating is that these foods that many people are allergic or sensitive to can create an inflammatory state that makes it difficult to lose weight, and can cause pain and digestive issues. Most people eliminate these foods for 30 days but add them back one at a time to see if they are a problem. For me, dairy and gluten are problems which makes sense as I was allergic to dairy as an infant, and genetic testing revealed the genetic variant for celiac. Try not to expect side effects from the anti-hormonals, you may not experience any problems that are severe enough to counteract the benefit they provide.
gundersk - I know there are some studies that look at skipping radiation after lumpectomy for those of certain ages, but I don’t know if anyone was triple positive, which is regarded as more aggressive.Here are some links:
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Welcome, Gundersk. We're so sorry you have joined us, but we hope you find this community to be a source of support. Your diagnosis would certainly be a factor in whether or not to skip radiation, as TNBC is more aggressive as SpecialK mentioned. But we certainly understand where you're coming from, and we hope you get some guidance from this community and your medical team.
The Mods
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I tried B6 for neuropathy, but it didn't seem to make a difference tho I might not have stuck with it long enough. I haven't tried alpha-lipoic acid. What doses have you all taken?
Haven't tried L- glutamine either. Accupuncture treatments helped resolve some of my neuropathy, but then stalled for any further progress.
SpecialK, that's interesting about your weight loss experience with the elimination diet. My husband drinks less beer and drops 20 lbs, but dietary changes I make seem to be very slow-going for any weight loss.
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My MO has me taking
Alpha Lipoic Acid - 600mg 2xdaily
B6 - 100mg 1xdaily0 -
Aside from protein, is there anything else I could/should be focusing on getting into my body to increase the blood cell counts? I read beets? I am a lover of borscht, which has beef in it. Is that helpful at all? Just looking for ways to try and eat something more beneficial than chicken noodle soup right now, but my tongue is pretty fried still.
I also ordered a new blender since my old magic bullet bit the bullet, lol. Any healthy smoothie recipes to share? The closest I've come is mixing protein powder with almond milk, haha.
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Thanks Morrigan for the dosing info!
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bliss - I know, right? It was so frustrating because I felt like I was doing everything right and NOTHING was happening! I had previously been able to lose if I walked daily and did a Mediterranean diet thing. I had gained 15 lbs in the year since diagnosis, and my weight at diagnosis was a bit above normal, maybe 5-7 lbs. My DH used to lose easily - although he was a distance runner for many years and weight wasn't a worry for him. He was diagnosed with hypothyroid about 3 years ago, and now knows my frustration! He also lost on the elimination diet, and it is nice because there really isn't portion control, you can eat quite a bit - it is more about what you eat and the proportions of foods. I took the B6 during TCH and continued for several years afterward, still resume it periodically. I took 30g of L-Glutamine during treatment and continued until the canister of the powder ran out - my neuropathy (toes, bottoms of feet, fingertips and tongue) resolved about 90 days after I finished chemo proper and was still on Herceptin. Is your neuropathy residual from the end of chemo for you in 2015? My mom had a lot of it from treatment for a degenerative neuromuscular disease. Some from the disease itself and some from the methotrexate she was given to treat it, ironically also a breast cancer chemo, the "M" in CMF.
smichaels - I do a shake of one scoop of vegan protein powder with ice, frozen strawberries, and unsweetened almond milk - that gives me 22g of protein, a good snack of almond butter on an apple is another 12g, a cup of roasted shredded chicken breast with some sautéed veggies over a cup of quinoa is about 45-50g. I had not read specifically about beets, but just did a quick Google check and it seems they do, but the best formulation is beetroot? Eggs are helpful, I usually ate them scrambled as that was most palatable and put a little cheese on top. Now I add vegan cheese and a little salsa. The most frequently consumed food throughout chemo - my go-to - was potatoes. Mashed potatoes were a fave, as was a loaded baked potato. I just added up the grams of protein in a loaded baked potato and it is about 25g - yay! Lol!
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Hi SpecialK. Yes, it is residual neuropathy from 2015. Not as bad as it once was, but bugs me mostly at night. May be too late to do anything about it now with supplements.
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Hi again group, Thought I would pop in to say hallo because it has been a long time and I can see some familiar names here. I did my 3 year check up this winter and I am still all clear. Thought I would let the newbies know since posts like this gave me a lot of hope when I was spending all my days and some nights on this very helpful website with all you great ladies. I am still hating the hormons I am taking but all and all I am doing ok. A lot changed after my treatment and I found it difficult with concentration, memory etc for a long time. I had a stressful job before and have changed a lot around myself. Exercise is still something I need to do more..:) Thank you all for being there when things were horrible. It was so helpful. I think some regiments have changed since my treatment. Kadcyla was not yet part of the treatment in 2016 so things are moving forward. I still haven't done a reconstruction but do not feel it is bothering me much and will for sure wait until this awful pandemic is over which might take a very long time.
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SuperK, thanks so VERY much for the articles. They confirmed what both you and my Radiology Oncologist indicated. The studies did not tease out data for we Her+++ ladies. So, I will continue to read and weigh my options. He did give me his support to not do radiation, but couldn't officially recommend it due to lack of data. My gut says to pass, and that is what I will likely do. I wish I would have found you guys earlier in my treatment as this is an amazing forum, better than anything else I have seen.
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Kattis!
It's awesome to hear from you and to hear that you're doing well. I'm not crazy about hormonal therapy either; it's hard to lose weight while on it. But, I've made it through five years of Aromasin, so there's only two years left! ((Hugs))
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Kattis - I remember you from when I joined and I'm glad you're doing well! Do you know how long you'll be on the anti-hormonals? I'm scheduled for five years (for now) and I've got...3.5 years to go, approximately.
Speaking of anti-hormonals, my MO wants to stop my zoladex injections and see if my ovaries are dead. I'm assuming they are because I was having a major increase in migraines before my diagnosis which I am told is a sign of peri-menopause. I didn't do the zoladex shots during chemo because I wanted my ovaries to die. But anyway, I am wondering if I should expect any changes going off the zoladex aside from just not having the shots? Or is it all rather uneventful assuming my ovaries don't to sputter back to life?
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hapa,
I took a "Zoladex vacation" last year and I didn't notice any changes. In any case, when my MO tested my estradiol levels, I was still premenopausal. So, it was back on the Zoladex for me!
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SpecialK - Thank you for all of the information It is very helpful!
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Yeslama -
it was me that asked about the Herceptin/Perjeta vs. Kadcyla. Thanks for the answer! It's so interesting how people's responses are different. My TCHP has resulted in horrible diarrhea. I had heard that Perjeta might cause that, but my MO thinks it's the Taxotere. They reduced my dose for Round 5 and it was much better. So I'm not sure it's the Perjeta. For me, I have a little the first 2 days, then I usually have 2 or 3 days where I don't poop at all. Then a day or two where it's normal or mild constipation. Then the diarrhea has been hitting. Some days it's once and manageable. Others, it's pretty virulent. I have my last round of TCHP on the 24th and then surgery, then continued biologic treatment until I hit one year. Not sure which one they will recommend, until we have the pathology from the surgery. They are saying Herceptin plus possibly Perjeta, but who knows. I just want the side effects reduced or gone. I know what you mean about everything liquid tasting terrible. I have a horrible taste in my mouth, especially at night. I can't get enough liquid some days because nothing tastes good in my mouth. My appetite is good and food tastes fine. But not liquid. I have the horrible dry mouth the first week, and then that seems to abate.
Kris
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wahoomama- I had horrible diarrhea on TCHP for quite a few of the rounds. The last two rounds I had to go in for fluids the week following my infusion and was given a prescription for lomotil, which did help. I am now on round 2 of HP and have not had anywhere near the problems I had on TCHP. I was expecting to still have diarrhea, but honestly it’s be very mild and I haven’t even needed Imodium for management. I also had the horrible taste in my mouth (everything tasted like metal is the best way to describe it) and it would go away right before the next round...where it would then start back up again. Happy to report that almost 2 months out from my final TCHP round everything tastes normal again!
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ajminn - Thank you! That's all very reassuring. And yes - that disgusting taste is the worst! It bothers me most at night. I'm trying to get in fluids and I just don't even want anything in my mouth by then. I so think the Taxotere is causing me the most issues, so I will be glad to see the last of that.
Did you have your surgery yet? We have almost identical DX - you are about 2 months ahead of me. Mine is scheduled for August. I assume I will need a small amount of radiation because I also had one positive lymph node pre-chemo. I had chemo first. Also - are you on an aromatase inhibitor? They haven't said anything to me about it. I'm 54 and post-menopause, so I'm not sure if I will need one or now.
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wahoomama- I had surgery as a first step in this messy process...backwards from most triple positives! My biopsies were only finding DCIS, but the surgeon just felt that since my lump was very large and palpable, there was an invasive component was lurking somewhere. She was right- I had 3mm in 1/3 sentinel nodes come back triple positive, but they were never able to find the invasive part mixed in with my DCIS. That node sent me into chemo, rads (1/2 way through now), and hormone suppression and blockers (starting at the end of this month as I end rads). It’s been a wild ride since diagnosis in December to say the least! I’m pre menopausal at 34, but my MO said the ovary suppression along with the daily blockers have shown to have slightly more successful outcomes for pre menopausal women
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@ajminn - they're doing Lupron and AI?
I expected that but, my MO wants to go with Tamoxifen until I'm done with Kadcyla
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Kaltis - great to have you check in. I gave up the AI's at about 30 months but I'm much older than you. For me it was the right choice. Stay well.
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Morrigan- yep I get the monthly shot (zoladex) and the AI daily pill (aromasin). My MO says I can move to the every 3 month shot version once we see how the monthly goes. I’m not looking forward to it. I’ve googled too much about SEs (just like I’ve done with every treatment I’ve gotten)...I’m hoping I handle them well. I’m supposed to stay on them for 10 years.
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Hapa, I changed from Zoladex to Exemestan about a year ago and not sure if it works better but my body aches has sure subsides. Zoladex made me feel a 100 years old. I am suppose to be on the hormons for 10 years said my doctor but most have 5 years as a minimum. I guess due the size of the tumor and the fact it didn't shrink completely with treatment maybe he prefer me to stay on longer than normal.
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