Taxotere, Carboplatin and Herceptin
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Blownaway is right - the journal also helps you remember how things were because it gets easy to forget!
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I chose to have Herceptin weekly instead of every 3 weeks. I just felt like my body would deal better with a smaller dose more frequently, and I had the time for weekly infusions, so I chose that route. Most do every 3 weeks.
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I am linking the Chemotherapy Side Effect Worksheets from the American Cancer Society - it is a PDF, so click on the link, then click on the first header and it should take you to the sheets themselves. I liked the way these were laid out and I printed off a set for each treatment. It helped me track what was consistent and what was new.
http://www.cancer.org/search/index?QueryText=chemotherapy+side+effect+worksheet&Page=1
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I wonder if a weekly lower dose of herceptin instead of every 3 weeks would have prevented my heart problem...No one ever mentioned other options to me. You would think with a beginning LVEF of low normal (56), they would have considered other/lower dosages. I intend to ask onco about any trials for those who can't take herceptin.
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I think the jury is out on that Blownaway, in terms of actual studies - I didn't find any strong evidence saying once weekly would reduce risk of heart damage when I looked into it in 2012. However it just made sense to me, so I requested it, and my onc was cool with it. I also requested my infusion be done over an hour as I know that reduced symptoms for several gals on here - so it just made sense to me...don't load the body with too much all at once. But really, so many do it every 3 weeks for 30 min without heart issues...that one can't really say that is the reason some get heart damage. Wish we knew for sure the reason!
Have you looked into the trials for the vaccine? SpecialK can speak to that.
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dancetrance - I'll add vaccine to my list for the oncologist. Is that referred to as immunotherapy?
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Not sure, probably? SpecialK did the trial, so PM her if she doesn't catch this and reply.
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Thank you so much for your comments. Knowing what I may expect (knowing that everyone is a little different) really helps. Since I'm new to all this, I assume MO means my oncologist? I'm supposedly seeing one of the best oncologists in my area (California Central Coast), but feel like the information I'm getting from him is limited and not always very accurate. For example, he told me I only had a 40% chance I would lose my hair and that's not what I read from the side effects for Taxotere or Carboplatin and not what they told me at the cancer center. I feel like it's too late to change now. Today is my third day post-first treatment and I'm feeling worse today (but still manageable). Without this blog and this information, I wouldn't have known that was to be expected. In all fairness to the cancer center and my doctor, I'm may not be hearing everything correctly either. It's all overwhelming and "is what it is" at the same time.
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hang in there Barbara. I lost my hair starting around day 16-18, somewhere in there. I never post every last strand but pretty much all of it. I still have some eyebrows and eyelashes and see new growth pretty much everywhere now.
I tried to take notes during my appointments and my husband always came if he could. It helped to have someone else hearing the information with me.
This board is helpful. There's probably a board for people starting chemo this month that you could join. That was a huge help to me.
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Barbara1954 I had my treatments on Tuesdays every 3 weeks. Day after my first chemo I was in the gym doing 70 minutes combined of elliptical and treadmill. I didn't start to feel weird till that Saturday but was still functioning. I went wig shopping that day. Some people do get herceptin weekly while doing chemo then switch to every 3 weeks once chemo is done. Not that unusual. I was told I would lose my hair and I did. I too kept a journal with dates. Printed it out each time so I would remember what happened and could tell my MO.
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blownaway - yes the trial is immunotherapy, encouraging your own body to fight off a recurrence. Here is a link. Phase II (which I participated in - GP2 arm) is now closed to recruitment. I read somewhere that they have to report out, which I think will happen by the end of this year, before they can open Phase III. This trial had two vaccine arms, and each had a placebo arm, but they had so much success I would imagine there will be a Phase III. Enrollment criteria, at least for Phase II, was that you had to be within six months of your last "treatment" so, since I finished Herceptin in January of 2012, I had six months form that date to start this trial.
https://clinicaltrials.gov/show/NCT00524277
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Thanks SpecialK for the link.
Barbara - I had an onco who felt it wasn't his job to teach cancer 101 to his patients. If not for this site, I really would have been in the dark. I have since changed oncos. These ladies helped me get through some really tough times with their suggestions for combatting s/e's.
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Barbara, ...My mo ( Medical Oncolgist) told me to expect hair loss around the second week after treatment and sure enough, I found some places were thinning out. I had already gotten a very short cut before starting chemo and at the point tht I saw my first bald spot I got clippers and shaved the rest off by myself.
I had planned frozen bags of peas during Taxotere, but I got Herceptin and Perjeta first each time and I had a bad reaction to Perjeta the first time and just felt too bad that first time to pull out the peas. After that first reaction I was given Tylenol and Benedryl before any treatment began. Ativan was also available if I asked. I asked and for the remainder of my chemo treatments I slept most of the time! My husband took me to chemo and worked from an area in the hospital set up for family.....he had a desk and internet. I could text him at any time, but I just slept! I'm continuing on Herceptin until August.
It looks like I escaped nail loss on my hands....but not my feet! My toenails have just come off, 31/2 months after finishing chemo. There were new beginning toenails already there. Good news? My hair is coming back in a brand new color ( I had been helping keep the grey away for a lot of years) and I'm planning to leave it.....just hoping this new color mix lasts!
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frozen peas would have been an attempt to minimize nail damage! That might not be clear
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Fionascottie…so do you take the frozen peas out of the bag? I'm visualizing pouring them into little bowls and dipping your fingers in them? Or do you just put the bags on top of your hands?
Barbara…I had my first chemo the day before you did. I too felt fine the first two days, then the next three days got a full dose of the side effects
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loriekg - The peas stay in the bags - I laid bags of peas across the front of my feet, but because I was also trying to hold ice in my mouth during Taxotere, I put the two bags of peas for my hands on a towel or sweatshirt in my lap and dug my nails in like claws. That way I could occasionally use my right hand to pick up my cup and get an ice cube for my mouth. I put my bags of peas back in the cooler, and returned them to the freezer after each tx, then threw them away once chemo was done. I did not continue icing during Herceptin alone.
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SpecialK - Just to compare notes.....My ring fingernails on both hands suffered some damage but never fell off. All of my nails are very thin so I keep them short so that they don't crack and snag on anything; I had tried keeping gel polish on them as protection but it wouldn't stay on, I guess because of the thinness. I had significant hand and foot syndrome but only on my feet. The toenails were fine but the bottoms of my feet burned very badly. Although my last chemo was Thanksgiving, I just lost my bottom lashes AGAIN (using Latisse on uppers) but I'm noticing that some of the upper lashes are looking like they are getting ready to let go and some eyebrow hairs are starting to gradually fall out AGAIN. Chemo is just the gift that keeps on giving.0 -
blownaway - The nail issues can continue for a while, and Herceptin only can also have an effect - I know you have stopped, but when was your last one? It may improve but take the length of time for the whole nail to grow from the very back - which was at least six months for the nail I had cut off. I did find that keeping them short and polishing with hardener was beneficial, so that I didn't catch them on things. Once the wedding ring fingernail grew out to the fingertip I went back to gel on top - no issues. Sorry about the hand/foot - all that inflammation may be affecting the nails, until some time passes. The lashes can cycle - they are used to falling out, under normal circumstances, one at a time. When they all fall out at once they sometimes cycle a couple of times until they resume a normal rhythm. I think the people who have had that experience report that the re-growth is pretty fast - hope so!
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SpecialK - My last Herceptin would have been around beginning of December. My hair grew in blackish with lots of gray - it was brown. It stayed at the 1/2" mark for a long time but just recently, it's grown to the 3/4" mark. I'm thinking about having a "ditch the wig ceremony" on April 1st which is the day last year that I had to tell friends/family about the B/C since I got word the day before from my doctor. Sure hope the growth speeds up between now and then - I look awful with short hair. I intend to color it by then also. So vain.....0 -
blownaway - I colored my tiny hair as soon as it was long enough that my hairdresser was not just painting my head. I had to wait a bit longer before she would highlight it - I don't think it is vain so much as a need to return to some semblance of normalcy! I had never seen my full head of hair without color since I started to go gray - I was pretty shocked at how much there was - more than 50%. My last TCH was in June but I don't think I colored it until late fall, then didn't add highlights for another few months. I cannot pull off super short hair - it was never cute until it got past my ears, lol!
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I think I'm in the process of losing my left index fingernail, with a few others potentially not far behind. I'm 6.5 weeks PFC and have had one Herceptin-only infusion. Chemo, the gift that keeps on giving...
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my hair is about 2-3inches....it is super curly(I had naturally curly hair before but always wore it straight). It looks like a mini Afro! So yesterday I tried to blow dry it and straighten it to see if I could do anything with it(I am so sick of wearing a wig!!) But it was a no go, it looked awful!! Hmmm, I guess I will need to stick with the wig for a while longer. I need to get it at least past my ear!! Anyone try a halo?? If so, how long does your hair need to be
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I had a halo but I only used it under hats when I had no hair at all. It was OK but I was one who preferred Buffs.
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Loriekg, Are you having the TCH treatments every three weeks? Herceptin every week? I had my first TCH treatment last Friday and then Herceptin only tomorrow. Yesterday I started to feel better after the first treatment and today I felt pretty normal except for some lingering body aches and not much of an appetite for food (oh, and don't forget the mouth sores
. I think something will taste good and after I take a bite say, "no, that wasn't it!" I'm not nauseous anymore (but I'm still taking the Zofran just so I don't get nauseous. Oh gosh, the nails??? I guess I read that a while ago and then forgot. Geez. Frozen peas, huh? While you're getting the infusion? I feel like I'm as ready AS I CAN BE be for loosing my hair. My daughter is an esthetician and gave me some permanent makeup eyebrows a few weeks ago in case I lose them. I guess we can't do that after we start treatment, however.0 -
I've never even been close to having a halo
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Barbara - ice the nails during the Taxotere portion only. I had mouth sores on the first infusion, then held ice in my mouth for the subsequent ones (during Taxotere also) and didn't have any more.
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Barbara1954—yes, I am having my TCHP every three weeks, but that's it, I don't get the Herceptin every week. I started feeling somewhat "back to normal" by Wednesday (six days later).
Do you have actual sores in your mouth? Like canker sores? My mouth feels very different and the texture of food is not appealing at all. But no sores. My lips feel like I rubbed a jalapeno over them (a mild jalapeno—don't mean to exaggerate *ha) I've been keeping carmex on them.
I know…I felt the same way upon learning about the nails. WHAT NEXT?! I'm ready for the hair part—in that I've bought my wig. And I keep telling myself how nice it will be not to spend the time in the mornings on my hair. And always having a good hair day. But I haven't cut my hair short or anything (JUST IN CASE I'm one of the rare cases) but my MO told me that with the Taxotere, it would be inevitable.
SpecialK—ok, I will be set with my pea bags next time! Now for the ice in the mouth—is just sucking on ice chips sufficient? What if I just ate ice cream constantly during that infusion?! Just kidding…
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loriekg - I usually brought crushed ice (from the dispenser on my refrigerator) in a Tervis Tumbler insulated cup with a lid. I just tipped the cup and got a mouthful of ice and kept it in my mouth until it melted, then got more. I also brought iced tea or juice so if I didn't use all the ice by the end of Taxotere I just poured the tea/juice over what remained so I could continue hydrating. Some people, and centers, actually use popsicles, so your ice cream idea is not far off, lol!
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I used ice chips (provided at my center). My MO recommended I do it after I did get a cancer sore the first time on my tongue. Never had another mouth sore after that. Sadly icing my fingers didn't work for me.
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