Taxotere, Carboplatin and Herceptin
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Happy New Year Everyone
I spoke to my MO Nurse today to ask if I could ice my fingers & toes during my TCH chemo coming up. She told me she has Never seen anyone do icing of toes & fingers at their infusion center. I am going to a large hospital in a big city. She did say he does not believe in Ice Caps.
She said if I get any neuropathy they will decrease my chemo dose. She did say I can ice them if I want, but she thought I would be very miserable doing that for so long. How many of you iced your digits during TCH? It seems so common on these boards, but I guess not around my area.
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My center did not sponsor icing themselves but both the nurses and my onc had no objection if I did it myself. I brought bags of frozen peas and began icing 10 minutes before my Taxotere infusion, throughout and for 10 minutes after, so approximately 80 minutes or so. I did not ice during the Carboplatin or Herceptin portion, only Taxotere. Yes, it was uncomfortable, but so is not having nails! I am not a believer that icing has any effect on neuropathy, I did it strictly for my nails to prevent lifting and loss. I did take 30g of L-Glutamine, 1500mg of Acetyl L-Carnitine, and 100mg of B6 to prevent neuropathy. The problem with reducing your dose after you have neuropathy is that it may already be permanent.
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2ndtime - I'm also at a big clinic in a big city & no one iced. I bought cheap soft side coolers at WalMart, added frozen peas in zip lock bags & changed out the peas 1/2 way through. They let me keep the peas in their pharmacy freezer. Be sure to ice down during the entire Taxotere infusion & for 15 min before & 15 min after. With me that was 2 hours since I had them run the Taxotere at 90 minutes. I believe it saved my nails. Thanks to Special K for the tip.
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Special K - our posts crossed. I agree - icing didn't do anything for neuropathy. I did take the Vit B6 & Vit B12 and the Acetyl L-Carnetine. Unfortunately I couldn't choke down the L-Glutamine and only mixed that up a time or two in all those months. It may really have helped - I just couldn't do it.
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I did not ice and no one I ever saw iced and I live in the 2nd largest city in MI....with that on both of my middle toes during the 5th and 6th treatment they turned red at the cuticle...they kinda hurt, but I have neuropathy too so I don't know which it is. I am praying the nails will not fall off and the neuropathy goes away. Just thought I was share my experience. Wishing to the best.
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For the record - I was the only one icing at my center, and everyone in the communal chemo room thought I was completely nuts, lol! I also held ice in my mouth during the Taxotere infusion, so I really did look a bit wacko.
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Special K. LOL. Well I am going to look like a wacko because I will be icing too. I want to prevent any SE that I can. I am going to take the meds you listed. I asked the Nurse about LGlutamine and B Vitamins. she said they were ok. Thx for all the fast replies. I love all the helpfull Ladies on these boards.
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Special K. LOL. Well I am going to look like a wacko because I will be icing too. I want to prevent any SE that I can. I am going to take the meds you listed. I asked the Nurse about LGlutamine and B Vitamins. she said they were ok. Thx for all the fast replies. I love all the helpfull Ladies on these boards.
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I also iced my fingers and toes during the taxotere portion of chemo, and sucked on ice for the last 2 tx's. My routine was similar to SpecialK and minustwo, and I was the only one at my center that I ever saw bring in a cooler! I did not have lifting or loss of any nails. I did, and still do, have a lot of nail splitting, but I think that is due to the Herceptin. On the flip side, there are ladies on these boards who never iced their nails and had no problems. Like so many other SE's, we are all so individual.
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I gotta jump in on the icing. I did not ice and I didn't lose any nails, I did have to cut them back to about half way and be really careful, but didn't have one turn black or lose one. My nurses said that losing nails during Taxotere is not very common at all. Though there are some on this board that have lost them. I personally couldn't have handled icing during chemo. Mouth sores - I only had 2 mouth sores during the whole treatment, and it was during chemo #3. I attribute it to rinsing my mouth - during the first 2 treatments I was diligent with rinsing my mouth several times a day with a salt/soda/xylitol rinse, during #3 I decided that I didn't need to do that, since I hadn't had any mouth sores - well guess what happened!!!! So I rinsed through the rest of treatment and no more mouth sores. I also ate lots of plain yogurt, not so much during #3, and very little sugar, and my chemo nurses said that was probably a big factor in my not getting mouth sores too. Plain, organic yogurt with fruit, flax & chia seeds was one of the few things that tasted good, so I ate it, made smoothies, etc.... all the time, except after #3 :-(
So just my two cents!!!
Wishing you all a Blessed New Year!
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That being said, I do need to say that I did get other side effects - I wish I had know about supplements for the neuropathy, because I do have that, but it is worse on the side that I already had some nerve damage from back problems. They will lower your dose if it's too bad, but my MO asked me if I could handle it, and if I had said no, he would have lowered my dose, but as long as I was "ok" with it, he kept it up. He really wanted me to have the highest dose of everything that I could handle to try to make sure that they got all the little guys that could be hiding out somewhere else in my body, and there I am, 3 1/2 years later NED!!! So maybe the residual SE's are tolerable. I also had another little SE that I haven't seen that anyone else on these boards has had, the chemo started to destroy my tear ducts and they were growing closed, so I had to have stents put in all tear ducts until 5 months post final chemo to insure that they did not grow closed and give them time to heal! So if your taxo-tears make it impossible for you to function, drive, read, use the computer, watch tv, even keep your eyes open, see an opthamologist, and one that has worked with a lot of chemo patients!
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Wow Thanks Linda KR for all the info
They told me they would decrease my dose if I got SE's but I thought that is crazy. I want the dose I need to kill this Cancer off!! I had 3 very positive nodes and have 3 kids to live for. I am only 51 so I want to be NED for 20 more years. I wonder how they decide how much of each drug to give you. I read about Robin from GMA getting dose dense chemo and then becoming pre leukemia..geeze...
I asked about getting Perjeta with the Herceptin and she told me no... I read this is a new drug for HER2+ cancer.
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Anyone else who wants to give advice please jump in. I have my 1st dose in 2 weeks and am trying to be totally prepared for it . (((((Hugs ))))) to all of my BC cyber sisters !!!!
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2ndtime I iced fingers, toes, and mouth (sucked on ice cubes) during the Taxotere infusion only (plus 15 min before and after). You don't need to ice during the Carbo or Herceptin as they do not cause nail/mouth issues, to my knowledge. For me, that meant 1.5 hours of icing. It was uncomfortable, but it was over and done with fairly quickly. I took an electric blanket to keep the rest of my body warm - that was awesome. BTW, I didn't ice my mouth all that well the first time and got a few mouth sores. No mouth sores for subsequent treatments when I iced better - totally worth it to me.
BTW, I also did cold caps. I was the only one in my center that did any icing at all. The nurses thought I was coo-coo-la-ru...but it all worked for me, and I just ignored them!
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dance trance
Too funny about the nurses !! I am so glad to hear it worked for you. I will be eating my ice chips during Tax for sure!!!
I am also going to Ice my finger & toes. I figure it will keep my mind occupied while sitting there for hours.
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Just remember you only need to do the icing 15 min before, after, and during Taxotere. No need to torture yourself longer than that! And I couldn't handle icing nonstop during that time - too uncomfortable. Give your fingers and toes a few minutes break now and again when they get too cold - no frostbite allowed! But not such a long break that they warm up completely.
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we should make at shirt with that on it - Dust Bunny Head Sisters.
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mckatherine - lol!
on the dosing question - dosing is calculated by Body Surface Area (BSA) - a height/weight calculation. This is why your height is taken, and you are weighed before each chemo. The dosing can change slightly if your weight fluctuates, but if a reduction is needed due to SE they seem to usually reduce by an even percentage such as 10% or 20%.
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I am one who had to have my dose reduced twice, due to a reaction during tx #3 or #4 (I can't remember), and also ringing in the ears. It is a fine line between giving you enough drug to kill any cancer cells, but do as little permanent damage as possible.
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I also had my dose reduced due to severe acid reflux not controlled by meds and due to increasing ringing in the ears.
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I also had my dose reduced the last 2 treatments due to low platelets, anemia and vomiting that wasn't helped with the anti-nausea medications (leading to dehydration and fainting). Glad its over!!!
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2ndtime - I got both Heparin & Perjeta with each of the 6 Taxotere & Carboplatin infusions. Since the FDA released Perjeta early for neo-adjuvent treatment in October because of the fantastic trial results, I'm wondering why your MO said no? I got it even before that when it was usually only a Stage IV drug because of a recurrence much like yours - DCIS to IDC in 2 years. Maybe the size of your tumor? Maybe where you are in the US?
That said - one of the potential SEs of Perjeta is neuropathy, and it hasn't been around long enough for any concrete numbers. I was scheduled for both Herceptin & Perjeta every 3 weeks for a year, but may cut the Perjeta since my neuropathy is already pretty bad.
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2nd time - I was diagnosed in November, and my BS sent me to the MO right away, even though I was totally operable with a lumpectomy immediately, because she knew that Perjeta was approved for early stage cancer for neo-adjuvant (pre-surgery) only. MO recommended TCH + Perjeta when I saw her. Then, MO attended the San Antonio Breast Cancer Symposium and when she got back, told me that she was changing her recommendation to TCH only (no Perjeta). I decided to go ahead with neo-adjuvant chemo, partly to get it over with, partly because I actually like the idea that with MRI/mammogram they will monitor how the chemo is working. But the original reason I was going to do neo-adjuvant (to get Perjeta) actually disappeared. My MO said that the results presented at San Antonio this year for TCH only were so good that she didn't think adding Perjeta was worth the risk of other SEs. The good news for all of us on this thread is that MO was really excited about the TCH only results presented this year in San Antonio.
I have another hair question . . . I was going to cut off my hair today at the wig store where they will make me a "halo." But, my daughters (age 6 & 9) say they would really like to come with me. Actually my 6 year old is dying to take hold of the scissors and cut some of my hair off herself
. They have school so the first I could bring them with me will be Sat. AM - for me, Day 17. I've started shedding - took a shower today & definitely more hair than normal is shedding. But not handfuls and not very noticeable for others. Just wondering if I'll be able to hold on till Sat (48 hrs). The wig store needs to be able to make small ponytails and cut them off. 0 -
I was just diagnosed in November-Triple positive, stage 2, both breast-total of 4 tumors. I too am on this regiment plus perjeta. My BS sent me straight to MO and this is my first line up of treatments. Started Dec 20-so have had one of 6 treatments so far. First week was a little rough-mostly D, some nausea, bad face break out...but have meds now and this week, I feel really good. I am hoping the first week is the worst and the rest of the cycle will be better. When I asked for ice at the infusion center-they told me they do not recommend it and would only give me water. I am using Sallys hard as nails to try to prevent damage.
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Oranjemama - I think you will be able to hold on. But you have to not touch/wash/fuss with your hair until then. I had an important business meeting that I didn't want to wear my wig to - and I just stayed away from it and it hung on. And I got through the meeting (and nobody noticed anything) and that night I buzzed it all off. It's only 2 more days. I don't think big clumps will fall out or anything like that, as long as you just leave it alone.
Good to get your kids involved. Makes it less scary for them.
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Oranje...Thank you for sharing the wonderful news about TCH your MO gave you. That really encouraged my spirit. I too did not mess with my hair to make it last longer. I never shave and I have maybe 5% of my hair...it sticks out in the back of my hats. God Bless.
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Thx to everyone for sharing with me. I will be getting the TCH only will see how I do. I am worried about neuropathy. So I think I am ok with NO Perjeta.
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2ndtime4me, may i ask why your mo says NO to perjeta??? thanks
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Ladies, I am 2 months out..post chemo, sometime i felt a little ache on my left knee n sometime on my left hip. its not painfull at all. i can feel sometime not all the time....here n there. i just started to feel this ache like 2 weeks ago. can this ache from herceptin?Thanks ladies!
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I had a lot of muscle aches and stiffness while on Herceptin-only. I would sit for a while (like watching a movie on tv) and then, when I got up, I would actually hobble for the first few steps till I got going. I didn't give it much thought until one of my (adult) kids happened to see it and was fairly horrified. It resolved on its own when Herceptin ended. But now, after a year on AI's, I do feel a more mild version of it. Not terrible, but I move a little more slowly than I did before all this. (I am five years older now, so who knows how much that plays a part...)
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