TRIPLE POSITIVE GROUP
Comments
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debian: when did you complete your last chemo?
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My last taxatore and carboplatin were in the beginning of September (2014), and by the end of the month peach fuzz was growing. The last Herceptin was in the beginning of May (2015). Here's a pic of the back of my head right before Thanksgiving.
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debian: your hair grew really fast in just 3 months. I hope mine will grow as fast as yours, You gave me hope 😀.
Thanks a lot
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still mad the hair on my chin is growing faster than head, and a beautiful shade of white and visible of cou
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Wishing you lots of hair, alice!
My aunt, a hairdresser, gave me Nioxin cleasner and scalp therapy conditioner for chemically treated hair. She said she had some customers use it and not lose their hair. I used it from the start of chemo, but alas, I went bald anyway, however I continued to wash my scalp with it weekly and I used it for the first few months till the hair filled in nice. I don't know if it helped it grow, but it felt soothing on my scalp, especially in the beginning when the hair was first falling out.
I also tried to be kind to my hair when it started to sprout so I didn't break off any new growth. I didn't overwash it. I never bothered with a wig, and only wore a hat or scarf for work or shopping. I stopped covering my head as soon as it had some fuzz covering it. People at work told me I looked like a rock star, lol.
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Good morning. Feeling shaky this morning and red faced probably due to steroids they usually do this to me. Will be needing laxative ugh!
Debiann your hair is very pretty. Looks like it came back thick and healthy.
IndyGal I am keeping note but didn't think about rating the issues thanks!
Jerseygirl I asked someone if my chin/neck hairs would stop growing too but was told no, guess I will kept wheezing!
Leaving soon for Neulasta shot. Have a great day everyone
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Hi Girls, so much happening here. Some newbies, sadly. But, this is a great go to group and I wish you all a smooth chemotrip.
I have a question..been on Arimidex/generic Teva for 13 months, SE's tolerable, foogy brain, hurty thumbs and bone loss pretty intense. Now talking about/rec the switch to Tamoxifen for a while, then probably back to AI.
I am hesitant as I prefer the devil you know type thing... and the 1st 3 months on the AI were bad. Anyone ever do such a thing? Any experience with Tamox. I am post meno.
Thank you,
Bridget
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oconnor... I started Arimidex a year ago after having been on Tamoxifen for just short of three years. I had a bad pap smear that showed endometrial cells there that were not supposed to be. Both my onc and my Ob/gyn thought it was tamoxifen related so switched me immediately. On Tamoxifen the major side effect I had were really horrendous, horrific hot flashes. On Arimidex, I have significant joint pain (combatted by taking a low dose of Cymbalta which almost eliminated most symptoms), the same thumb issue which required wearing a brace and getting a steroid shot. I have some bone loss but already had that starting so have been on Prolia for a year. I'll get a density test in December to see if there is improvement. Lots of weird arthritis issues which I never had until I started Arimidex.
My aunt who is 94, was diagnosed with BC about 8 years ago. she is still chugging along. Never had a lumpectomy or anything, but they switch her up between Tamoxifen and Arimdex all the time.
Debiann....I was going to get some surgery to tweak a few issues in the shape of one of my foobs, and had also talked about additional fat grafting/lipo or a slightly larger implant. Then Special K had some surgery done that went south. that was all it took. I decided to be happy with what I have that is working and stick with it a while. Scared me straight. I decided the ones I got rid of that were big were not really too great looking anymore so maybe I was being a little too picky with my new small perky ones. I do plan to go to get my nipples tweaked up with the 3d look by Vinnie Myers in the next year, but that is about it.
Like you, Ive had some people die of weird unexpected things and I have decided not to tempt fate and ask for trouble.
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Where did all the Stage 3 Survivors go? Anyone know where Camilla went?
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Fluffqueen, I'm still undecided, leaning a bit towards be happy with what I got. I see the PS again in September and we'll make the final decision. Besides feeling like I'm tempting fate, I don't know that I want to put my body through the wringer again.
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Lj I am her2 positive with a very small tumor (1.5mm) plus a single focus of microinvasion in my dcis. My her2 is very very strong. (fISH 4.8). I am in Boston and poured over the Dana Farbwr studies on early stage small rumors with no nodal involvement. I had great odds without chemo, but recent research shoes the results with taxol and herceptin are spectacular. So I am doing chemo. My her2 was just too strong not to. I might have made a different choice if I was her2- but I'm not. It's a tough choice. I have had few side effects and work full time. Just some really bad heartburn and some Bone pain.my hair is thinning dramatically, but I cut it short and have no need to wear anything yet and I'm half done with treatment. My period also stopped.
Greta my face is red on the weekends too from the steroids.
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Hey ladies,
Met with the first oncologist today. I liked her a lot (but won't let that influence my opinion of the second, whom I'll meet next Wednesday). I'm looking at TCH--six rounds of TC+H and then Herceptin for a year, no radiation because my nodes were clear and I had a mastectomy. She's planning to do baseline labs (CBC + full metabolic panel) and an echo. She also mentioned Neulasta, which I think I'll probably do, given that I teach mostly university freshmen and they're like petri dishes!
She's amenable to complementary medicine as long as she can see the ingredients. She nixed my green powder and protein powder, but everything else is a go, including my multi, magnesium, vitamin D, and melatonin. She said I can ice my hands and feet if I want to; for some reason the Taxotere/nail thing is freaking me out a bit, and I'm not very excited at the prospect of neuropathy. She suggested B6.
Any advice?
Also: welcome to the other newbies. Sorry we have to be here, but we're here together.
Happy weekend, all.
-kate
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Hi Kate!
Some ladies take L-Glutamine to prevent neuropathy. Special K knows about the dosing and all. I, personally, did not take L-Glutamine. I got some mild neuropathy (tingly toes and fingers) while doing Taxol-Herceptin-Perjeta, but it went away once I finished chemo.
Ha ha ha -- yes, students are germy, no? When I was doing chemo, my favorite was the student who kept visiting my office to update me about his mono. Really, I thought, just email me about it!
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Kate,
I cold capped through 12wks of taxol/ her spring and did very well, lost almost no hair in fact I've had two hair cuts since finishing chemo in April... It grew that fast! I didn't ice anything but my head and had no nail or hand or foot issues such as neuropathy or blackening
I took l- glutamine daily along with B6 D and biotin
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I am wondering how many Triple+ decide against chemo? I am 58, mytumor was 9mm, high grade(3), Her2FISH 2.2, I had a bilateral mastectomy as I am BRCA1 and there was no node involvement. Any opinions?
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Kb - I would wager not many, this type of cancer is too aggressive and dangerous to skip systemic treatment - mainly the targeted monoclonal antibody drugs, which are thought to work better with chemotherapeutic agents.
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Hi to everyone. So I took a bottle of Mag Citrate yesterday at 4 and it's 12pm today and this is ridiculous ! Oh my gosh I would never have taken it if I had known this! The mild constipation was much better than this is! Oh wow does is go away! No control! I have found that I need to take my antihistamine and Advil for pain with the neulasta shot. It's not real painful but I can tell the difference without the meds. Beside the side effect of this mag citrate I was feeling pretty well. Some fatigue and fuzzy but ok.
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greta - you now have the Big D?
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And that's why I took Metamucil.
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Sorry to hear about the D gretagirl. My mag citrate is a 500mg cap which is equivalent to a tablespoon (15ml) of the liquid. It i . Fine balancing act. If I get too overzealous I add calcium carbonate. I got hit hard by dose 4 of TCH. By day 2 I try to switch or add simethicone to help with the indigestion.
My first dx was ++ her2- and opted no chemo. With TP, I know H was in the cards even before final path was back. Had surgery scheduled before seeing MO due to dysfunctional uterine bleeding x 6 months. 4 yrs of T and being a DES daughter sent me to crazytown. Was surprised by the screening mammogram that went bad. (Thought the cysts were acting up again.) KB listen to your MO and ask questions. Get more than 1 opinion. I had initially said no chemo back in the day but with the help o all here it is doable, take 1 step at a time.
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Gretagirl. I would get constipation from the steroids that would turn into the big D from the chemo literally in the same day. Day 3 I'd wake up with C in the morning and end with D at night.
I found that starting with stool softners the day of chemo, before there were any sympotoms, helped me to avoid the C and lessened the severity of the D.
I also went on prilosec for the duration of chemo for the burning, cramping and other issues I had.
Feel better.soon!
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Well some "things" have finally subsided! Now I will search for that happy medium but I hope to never take that stuff again oh wow! Now I also know I lean toward the "drier side" so to speak. Have to switch to Aleve for the Neulasta pain Advil not cutting it. Still take my Claritin day three from shot. Had a scare with my German Shepard today vet thought she may have been bloated and would need surgery I fell apart! She is my baby I cried my eyes out. She is good turned out to be athritis but I have to get her on something soon. So I am headed to bed it's been a long day and I am wiped out. Have a great Sunday ladies and as always thanks for sharing and just being here to let me sound off!
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I took Aleve for Nuelasta too. Just a few days though
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Motrin and alive did not work for neulista, finally day before chemo, chemo day, and next 3-4 days the Claritin worked, see what is best for you. As for C and D in the same day, I think, we have all had that at some point. Now the neuropathy and hair issues are my two contentions. Feel better gals
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Hi ladies! Joining the group!
My second round of TCHP is the day after tomorrow. Hoping for no NEW SEs this time around. I'm planning to chew on some ice through the infusion to try to keep my mouth from getting so tender and sore this time.
Best of luck to all!
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TizzyLish I ate ice and drank cold water the whole time I was receiving treatment. With that and keeping the ice packs on my finger and toe nails I was pretty cold but it was with it.
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Quick question: I'm starting TCH in a couple of weeks (TC every 3 weeks for 6 cycles, Herceptin every week), and I wonder about icing hands/feet/mouth. I just do this while they're doing the Taxotere infusion, right? Or should I also do it with Herceptin and Carboplatin?
Has anyone had good luck with frozen peas, as in, do they stay frozen enough the whole time?
Another question: has anyone taken l-glutamine to prevent or reduce neuropathy? If so, how much and when?
Another question: if I'm receiving Neulasta (which I probably will), when do I take the Claritin?
Thanks in advance for your answers. I really appreciate the help and education.
I think I'm going to do chemo on Tuesdays; that way, I'll have energy from the steroids on Mondays and Wednesdays, which are my teaching days. . . . Fingers crossed that I'm done with TC before winter break!
-kate
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kate - I did all of that - I iced with frozen peas (brought them in a cooler) and used a bag for each foot, laid across my toes, and held two bags on a towel on my lap and dug my fingers into the bags. I did that so I could use my right hand to get ice chips (brought from home in an insulated tumbler) to hold in my mouth. I started icing about 10 minutes prior to the start of Taxotere and continued to ice about 10 minutes past. You only need to ice during the Taxotere portion - I was infused in TCH order, so Taxotere started right after the pre-meds were finished. There are some ice mitts you can get but if you are worried about whether the peas will stay cold enough you could always bring extra peas on ice and swap out in the middle of infusion. I did take L-Glutamine, 30g a day in three 10g servings. I used powdered L-Glutamine, available at most health food stores, Whole Foods, or GNC, or online. It needs to be dissolved in cold non-acidic liquid, acidic or hot liquids will denature it. Don't mix it with food as it will taste chalky, I used tea or cold non-acidic fruit juice. For Neulasta related bone pain I took 10mg of Claritin (or generic loratadine) and it should be taken an hour prior to the injection at the minimum. You can even start it the night before. Take it for at least several days at 24 hour intervals. I used the one that dissolves on the tongue and carried it in my purse in case I forgot to take it at home and didn't have any water with me. It did make a difference for me to take it prior to the injection, the one time I took it 30 minutes after I had the most bone pain, that was infusion #3. Claritin is thought to reduce the edema that forms in the marrow as a result of the rapid expansion in the process of making new white cells. Good luck and ask any more questions you have now and as you go along - that is why we are here!
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Started taxotere, carboplatin and herceptin thursday. Felt good until Sunday now weak, nauseous even with the meds, headache off and on. Dark circles under my eyes and look terrible. I feel shaky and can't be up for long. Staying close to the couch. Food is unappealing I have to force down what I can. Does this let up? I really thought I would go to work and be fine now I'm wondering if I can do this at all and it is the first dose of 6! Feeling scared.
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Mmay, sorry treatment is being unkind to you. It wasn't nice to me either. While I know many are able to work, I was pretty much stuck to the couch from days 4-1O and it got worse each round. Ask your MO about going back to the infusion center for extra fluids, it really helps. I turned them down rounds 1&2 thinking I could drink enough on my own, but ended up in the ER round 3. The doctor explained that although I was drinking plently, it wasn't being absorbed by my cells (or something like that). Plus all the water I was drinking was flushing the sodium out of my body. Bottom line I was dehydrated and needed IV fluids after every round. I would go back around day 4. The infusion really picked me up. I probably should have asked to go back day 6 too.
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