TRIPLE POSITIVE GROUP
Comments
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On the eyebrow/eyelash convo - mine had started to thin prior to diagnosis due to age. Brows are also blonde, but lashes are darker. For a few years I penciled brows to fill in and found that tinted brow gel (Anastasia, Bobbi Brown, and Benefit all make good ones in different tints) made them look fine, but my daughter, who has inherited brow thinning from my husband's side, got microblading done and it looked amazing. I did it about 18 months or so ago to provide more shape and so I didn't look brow-less if I didn't have makeup on. I love it, but I warn you - don't let just anyone do yours. The woman who did mine is very picky about who she works on, has a lot of rules that are very important to follow if you want them to last, but is so good that people fly in from all over the country to have her work on them. It was $500 for the initial procedure, then $100 for the 6 month touch-up. She said I shouldn't have them touched up again for 3-4 years. I also tried lash extensions, my daughter also has those so she can essentially go without make-up at all between the lashes and brows, but I was allergic to the hypo-allergenic glue, lol! It is something to consider but requires a lot of up-keep in the form of fills - much like acrylic nails.
Steroids - I only had day of steroids for my first two infusions, and then had a late onset allergic reaction so had them before, during, and after from that point. I could not handle the steroid crash, so I did extend my after ones by cutting them in half, and stepping down from there. It might be worth it to ask if you can taper, or take a smaller dose, or try eliminating it before and after and only have on the day of infusion.
Neulasta - some oncologists wait to see if Neulasta is needed for at least two reasons - some insurance companies won't pay for Neulasta, which is very expensive, until there is a demonstrated need in the form of dropping white blood cell (WBC) counts that put you into the danger zone. The nadir is 7-9 days after the infusion, so it takes a bit of time to tell if you need Neulasta. The other reason is that taxane agents cause bone pain in and of themselves, and NEulasta can cause intense bone pain also. While Claritin can help with this pain from Neulasta, by calming the emeda generated in your bone marrow by the generated production of new blood cells, it doesn't work for everyone, so if the drug is not needed it eliminates something that can add, or cause, an unnecessary side effect.
Taxotere can indeed cause mouth sores, I probably had 15 after my first infusion - I would use the ice chips if you are prone to this (cold sores, fever blisters, canker sores) to prevent them. They are pretty miserable. I used Rx Caphosol to deal with them, and it worked like a charm. 48 hours later all sores were gone. I used ice chips for the remaining five infusion and never had another. Mugard or magic mouthwash also work, but it is a good idea to rinse multiple times a day with a combo of salt, baking soda and water (1 tsp salt, 1 tsp baking soda, 1 qt water), some keep a batch of this with little paper cups near the bathroom sink as a reminder to rinse. I also iced my fingernails and toenails during the Taxotere portion of my infusion. Light penetration and Taxotere are thought to cause onycholysis, or nail lifting and loss. I painted my nails with navy or dark gray polish on the day of infusion, then removed that polish the next day and painted a coat of clear nail hardener which was provided in a little kit from the maker of Taxotere, Sanofi Aventis. I painted a coat a day for seven days, then removed it and started over. The day before the next infusion I painted the nails dark. I had no ridges, or mees lines, but did lose my wedding ring finger nail about 6 months after chemo - it was the only one that lifted and it just wouldn't grow adhered. The whole nail had to be removed and took about 6 months to complete grow out. I also lost a pinky toenail, I don't think that one was adequately iced, but mine are so tiny that the new one grew in almost immediately.
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I had neulasta with every TCHP, but my WBC went up with every round of chemo. By the end, I was really questioning if I needed it but kept forgetting to ask the NP before my infusions (I blame chemo brain) so I kept getting it.
I thought the steroids were the worst part of treatment. I got them as IV premed then took them for two or three more days after chemo. After two rounds, I decided to taper the last two doses over two days instead of every 12 hours as they were prescribed. I don't think it made much difference. God I hope I never have to take dexamethesone again.
Does just Herceptin cause mouth sores? I have still been getting them, though not nearly as many or as bad as during chemo. I had my last Herceptin Mar 11 and my last mouth sore about two weeks ago. Maybe they're unrelated?
My nose is still dripping too. When does that stop?
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SpecialK - thank you for that very valuable information! So helpful!
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SpecialK is wonderful! And I've always thought that whether you had steroids as a pre-med only or a day or two before and after had to do with the type of treatment you were receiving. I only got them in my IV as part of the pre-meds but think that's standard for Taxol only.
Alicesneed--hope yesterday went okay. You should have some goodies arriving soon.
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Alicesneed, I’m also on TCH, round 5 is this Friday. I didn’t get Neulasta with my first infusion, MO said they’d wait until labs showed I needed it. I’ve had it every infusion since then. If you do get it, taking Claritin and Tylenol does help a lot with the bone pain SE.
I also got mouth sores. Minor in rounds 1 and 2, much worse in round 3. Based on advice from these forums, for r4, I sucked on ice chips during the entire taxotere infusion, and I have not had a problem with the mouth sores this time. So I’ll be doing the ice for my last 2 rounds. It was well worth it for me.
My steroids are 16mg per day (8 morning, 8 evening) all 3 days. I definitely get a jittery buzz (and get lots of housework done!) and crash a bit the next day, but it hasn’t been horrible. I just plan for the first day off steroids to not have to do anything.
Good luck, wishing you uneventful treatments with minimal SEs!
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I received Neulasta shot every time I had chemo--it was always the next day. When I went in for my 5th chemo they couldn't do chemo as my numbers were too low. I'd hate to think of what they would have been had I not had the neulasta shot. My chemo was Taxotere and Carboplatin.
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What is microbladding?
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Thanks Kathy03 - will definitely do ice chips next 5 rounds and keep swishing my mouth. Looks like I need to keep nail strengthened on too! So much to remember. MO nurse did call back and said they will draw labs Monday then give Neulasta if needed. I already started Claritin - I think I’ll keep it going until then
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cowgirl - microblading is an eyebrow tattoo technique that creates hair-like lines that look morerealistic compared to a solid application of color.
Here is my natural brow post-chemo, I have some hairs but they are blonde. The second photo is with microblading. These photos were the before and after the procedure.
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alicesneed I know the steroids are awful...but as someone who had anaphylaxis during her first taxol...followed by a second, allergic, hypertensive reaction when they tried to taper me off...they are well worth it! Hugs!
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Thanks for the before and after, SpecialK. What great results!
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cowgirl - thanks! I have been happy that I did it and was fortunate to have my daughter's result reassure me that this person would do a great job!
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Thanks Trejoli2! Just riding it out and learning as I go. Your feedback is helpful.
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Alicesneed, I had TCHP and received nuelasta at my very first infusion and continued it each session thereafter. Good luck.
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I think I'll just keep drawing mine on, doesn't really take more than 2 minutes.
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Hi dear triple positive ladies,
In the thread "Breaking news from sources other than breastcancer.org", lumpie posted a link to the Living Beyond Breast Cancer 2019 Conference on Metastatic Breast Cancer: Thriving Together held in Philadelphia, PA April 5-7. There is a very interesting presentation on "The effect of physical activity on breast cancer and outcomes" by a guy who is doing research on breast cancer and exercise at MSK. They are investigating the response to exercise by cancer subtype at the molecular level, to explain some contradictory results, and to understand which patients will benefit from exercise, and how much they should exercise.
If I am reading this correctly, our triple positive breast cancer (despite of the guy having responded incorrectly a question from the public), is responsive to exercise. Whereas some types of hormone positive, HER2- cancers, and most types of triple negative breast cancer are actually resistant to exercise, and see no benefit from exercise.
@SpecialK, have you seen that video? Can someone explain to me what molecular subtype us triple positives are? My understanding is that we would fall under Luminal B, and in the presentation this guy gave our cell lines would be the BT474 type.
This presentation was really fascinating
Cheers to all
LaughingGull
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laughinggull - I can't find a link to the specific presentation - is this Lee Jones from MSK? My understanding is that he has an exercise lab at MSK and is looking at the impact of exercise, and specifically cardiovascular improvement and effect on recurrence and DFS/OS. As far as molecular subtype - a small number of Her2+ are Luminal A, more are Luminal B, and the remainder, like me are Her2+ (ERBB). I had Mammaprint testing that gave me molecular subtype info, but most triple positives don't have genomic testing done so will not necessarily know their molecular subtype for sure. As far as exercise and the effect on recurrence - most of what I have seen has to do with lowering the amount of estrogen by modulating the amount of existing body fat. I have seen the percentages thrown around willy nilly about risk reduction, but my interpretation is that applies at higher percentages for those with excess body fat. If you are thin at diagnosis, or have lost weight, I am not sure how much benefit for estrogen reduction there is through exercise. Wouldn't apply to TN patients because estrogen is not a factor. Of course, exercise is always good, but I am not sure if it can be quantified beyond generalizations.
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Hi SpecialK,
The presentation is in the link I sent, the video by Lee Jones from MSK. Yes, what you are saying makes sense and is consistent with his tests, and the blanket 40% reduction in recurrence chances for all subtypes doesn't. I was rather thin at diagnosis (although with more body fat than when I was younger) and already exercising a lot, so probably exercise wont lower my recurrence but who knows. At least it helps my moods
Thanks!
LaughingGull
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Hi All,
Alicesneed - I was given Nuelasta on day one of chemo (without asking), and continued with it all 6 treatments.
My eyeashes keep falling out. they are short little sparse stubbles- My most disappointment. My once heavy eyebrows are sparse, no hair under my armpits, and only the hair on the front of my legs came back. #stupid cancer
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Agree with #stupid cancer - never lost leg hair through chemo - still had to shave which added insult to injury as the hair everywhere else was gone for the most part, and first thing to grow back was a mustache. Um...what?
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I kept all my dark hair during chemo - just from my knees down.
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SpecialK,
I also saw the growth of some unwanted facial hair after chemo. The weird thing? The hair only appeared on the right side of my face, or "the cancer side" as I call it. Yuck.
But I have been blessed with smooth legs -- never have to shave those suckers again!
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I don't think I've seen any discussion on this so thought I would ask the question. I was diagnosed with osteoporosis last May and started taking Fosomax. Then in August was DX with BC and started with TCHP. After the initial 6 Infusions I will continuewith HP for another 11 treatments and also started taking anastrozole. My understanding is the chemo and anastrozole can cause bone loss so I was happy I was on Fosomax and was looking forward to my next dexascan to see if I had any further bone loss. I just found out that they changed the guidelines for dexascans from every year to every other year so my insurance won’t pay for it until next year. I don’t want to wait so I’m covering the cost myself. I had a pretty significant loss of bone when I was first diagnosed and therefore want to ensure that the Fosomax is working.
Have others run into this situation or has your insurance covered the cost? Just curious, I personally think this is an important test for those of use who have full blown osteoporosis and are taking meds that cause further loss.
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I was also told that the general recommendation is DEXA scan every two years, that is what the MO told me. However, my PCP said that, since I had ovary removal and now aromatase inhibitors due to the breast cancer, and I had mild osteopenia already before, she wants me to get a DEXA scan every year. She says the two-year DEXA scan makes sense for the general population but not for breast cancer patients on hormone treatment. We didnt make it to the 1-year mark, though, so I am not sure if the insurance will authorize it.
Did your MO recommend it? Did your PCP? Can they help you make the case to the insurance company and press them to pay for it? You shouldn't have to pay for this out of pocket!
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My general practitioner thinks that the two-year Dexascan is more likely to show changes in bone density than a yearly Dexascan (longer time-frame). So, even though Aromasin gave me full-blown osteoporosis (which was addressed by Fosamax and is now being addressed by Prolia), I'm good with the two-year Dexascan (which I should be getting soon).
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The two-year guideline for DEXA scans, adopted by most insurance carriers, is based on the WHO recommendation. I had pre-existing stable osteopenia at diagnosis, had a DEXA on the same day as mammo/US that led to diagnosis so I had a very good reference point prior to chemo and anti-hormonal treatment. I had pretty drastic acceleration of bone loss by six months into letrozole, so I started Prolia. I had taken Actonel and Boniva previously when first diagnosed with osteopenia (after hyst/ooph at 45 when firmly pre-meno) but I could not tolerate oral meds due to a previous surgery for reconstruction of my gastro-esophageal junction. In my experience, if your oncologist orders a DEXA, insurance is more likely to pay no matter what the interval since your last one. Not so much if it is ordered by a primary care provider or OB/GYN. I had one a year after a normal interval one because I had sudden onset hip pain and my MO was looking for avascular necrosis, which is a rare SE of Prolia. I didn't have it - turns out I am just old and had trochanteric bursitis, fluid in my hip joint, and stress tears of the gluteus medius muscle...but, hey, it beats bone mets or crumbling infrastructure. For those who need a DEXA sooner rather than later - have your oncologist order, you may get more traction with your insurance company.
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Thanks SpecialK
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rljes, my lashes fell out four times - very frustrating. This time they have lasted longer than before so I'm hopeful. My last Taxol was the end of February.
Ingerp, that really sucks about your leg hair. Mine fell out but it was the first to came back.
SpecialK, your eyebrows look great!
I use Benefit's Gimme Brow and mine look better than ever
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anyone think it’s worth trying one of the lash/brow growing serums while still doing chemo? I have 2 more treatments left, and still have lashes and brows. No much hair anywhere else, but at least I have that
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paloma1211, I had to be the bearer of bad news but I had my eyebrows and eyelashes until 2 to 3 weeks after chemo. I didn’t try any of the creams, I’ve just never had luck with those types of products. I will say I’m now 4 1/2 months past chemo and have got good growth back. Whatever you decide, good luck
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