Taxotere, Carboplatin and Herceptin
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I understood that it was Claritin not D then I got this reply to my email from him that said D. That's why I was confused. Thanks for the links.
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No problem!
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Neuropathy vs Hand-Foot Question = I am almost 2 weeks into my second cycle of TCH and have severe foot pain. Walking and wearing shoes have been gradually becoming more and more painful to the point where I am thinking of asking my doctor if I can change regimens. I can't imagine trying to live with these symptoms long term. I don't know if it is neuropathy or hand/foot syndrome causing the problem - I do also have pins and needles in my feet and don't notice any peeling or redness. They decreased both my Carbo and Taxotere doses after my first cycle since I started getting symptoms - but they were milder then. Does anyone know how often people change regimens due to side effects? What other regimens are available? I'm triple positive and node positive so chemo isn't optional for me. They originally chose TCH over AC-TH for me to avoid cardiac risk since I have a pre-existing arrhythmia. I'd appreciate hearing if anyone else had problems with severe pain or knows about treatment options! Thanks!!
Rockermom - So sorry to hear how hard your first infusion was. I also started my treatment in April and regularly read the April board. It is full of useful information and support! Everyone on it is very welcoming. I come to this board for TCH specific information - I find the combination of boards especially helpful.
For those suffering from bone pain from Neulasta - my onc tries to use Neupogen rather than Neulasta whenever possible. It has less bone pain but requires more shots. The shots hurt but I suspect not nearly as much as the bone pain from Neulasta. Ten Neupogen = One Neulasta. I get 3 Neupogen each cycle - it may be changed to 2 next cycle (number is based on my blood count each cycle).
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Thanks kirklandgal... the chemo was just fine but the virus wasn't.
Anyway, I'm sorry to everyone else for cluttering up with off topic commentary. I will try to stick to the April chemo topic for all the mish mash. My brain isn't working properly
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rockermom - Don't apologize. You're not "cluttering up" the board! All aspects of the chemo experience are on topic!!
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Rockermom, If I read correctly, you were also having bloody noses...
What I found helped with them was putting a slight amount of aquaphor on both ends of a q-tip and gently coating the inside of each nostril with each end every night before I went to sleep. Don't glob it....a small amound does the job! It won't eliminate the bloody noses entirely, I found when I did this, it kept the inside of my nose protected and I seemed to have fewer bloody noses.
Btw, you are not "cluttering up the thread!
Good luck!
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rockermom66 sounds like you got through this. I found I healed slower once chemo started. Don't worry about "cluttering up" the board. Have you seen my post count! Talk about a post ho.
kirklandgal I had burning feet if I walked too much as well as numbness in my left heel. Actually I think I had pins & needles in my hands but I started Acetyl-L-Carnitine and never got it in my hands again. Mostly some burning if I walked too much ( I mean like hours, plural) and of course the left heel kept getting numb. It's still a little numb. Something I will have to live with but not so bad. I think when I'm 80 it will be a problem because it will effect my balance. I'll worry about that when I'm 80
I do believe Taxol as worse issues with Nueropathy. Both Taxol & taxotere are from the same tree (needles versus bark). My onc was going to lower my dosage if it got worse but I was very mobile so she didn't.0 -
I am post chemo and rads, still doing herceptin/every 3 weeks. I just don't feel the same as I used to before all this started, only 7 months ago. Started chemo Sept 30th. I dont have anywhere near the stamina, strength, my memory is not functioning as well. I run out of energy pretty quickly. I know life is different because of the BC dx, but will we ever get back to the same level of health we had once we are done with treatments?
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Waiting - I am now 10 months post chemo - feeling really great - energy level significantly improved. I still have some other side effects, but my energy level has definitely returned markedly over the past few months. My hemoglobin did not climb above 12 (normal) until 7 months post chemo. Perhaps the same issue could be going on with you.
Our bodies go through so much trauma through all of this - give it more time, and try to gradually build your stamina through exercise.
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Lago: Thanks for your description. I could only think to describe the balls of my feet as "raw" since 1st tx, with two toes sort of numb. Burning is a much better word.
Kirkland: Sounds like we tracking somewhat the same path.
2nd tx tomorrow & they aren't changing the mix. Unfortunately neuropathy is a side effect of taxo, carbo AND Perjeta. I have L-Carnatine but it didn't match up with my BRAT diet. I'll try harder to get it down this time. Also added B-6 and B-12 and L-Glutamine, but stopped them too because of the big "D" (not to mention the infusion center wanted me to stop everything even tho MO said OK) Someone suggested to ice the feet for neuropathy during the 90 minute taxo, so I'm going to attach icy sports bags to my feet with ace bandages. And thanks to a tip from Special K I'll be putting my fingers in frozen peas for that same 90 minutes for my nails.
This site has such a wonderful wealth of information & caring. Thanks everyone.
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I will be starting tx soon.....for all the tips like the frozen stuff...do you all just take a cooler with you ?
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I transport in a cooler but my center also has a freezer where I can put the things until I start the taxotere - 3rd on the menu for the day.
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I took a cooler, and a large bag with a blanket, small pillow, ipad, magazines, snacks, etc. We always looked like we were moving in!
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Lol....ok tx for info.....have no clue what to "pack" lol
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MinusTwo If burning is involved then it's nerves. Sounds like nueropathy to me. Shingles is also nerves and burns… got that too 3 months PFC for 5 weeks. That sucked more than chemo.
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Chick - talk to your center. They're all different. I took everything but the kitchen sink the first time. How my son laughed! My center has drinks (sodas,water,etc.), snacks, popcorn served twice a day, a microwave w/ soup mix & hot chocolate, menus for restaurants that deliver, and best of all - hot blankets. This time I'll take MP3 player, a sweater, a cap for my bald head, books & magazines and a PBJ sandwich.
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Lago - any other suggestions to counteract this? I really don't want permanent damage - but who does.
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MinusTwo - Yes, it sounds like what you are experiencing is similar. I think the word "raw" that you use is a great description of how my feet are feeling right now. I"m taking a B Complex vitamin and extra B6. I was taking Glutamine at the beginning but my liver function tests became abnormal after the very first infusion so I stopped it because I read you shouldn't take Glutamine if there's anything wrong with your liver. If you find something that works to help your symptoms, let me know!
Lago - I haven't tried the Acetyl-L-Carnitine. What is the dosage? Thanks for the advice!
Chicka - I also look like I'm moving in. I have two coolers - one on wheels that I keep bags of ice for my hands and some ice for my mouth (although I haven't been chewing much ice since my hands are occupied!) and the other cooler is for me to put my feet in and fill with ice (it's a coleman party stacker). I have to bring lots of ice and keep everything cold in my coolers until the Taxotere since my infusion center doesn't have a freezer and only has a minimal amount of ice available. Unfortunately, the icing doesn't seemed to have helped prevent neuropathy for me but it's definitely worth trying - sounds like it works for a lot of people! Good luck!
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MinusTwo I just took the Acetyl-L-Carnitine, different than L-glutemine. I do think that icing would help. I know I iced my tongue to prevent mouth sores. It worked but I also noticed my taste changes were very minimal.
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Thank you everyone, I feel silly but what else is new
cgesq, I am definitely going to grab some Aquaphor the next time I get to the store. I used a little vaseline last night and that helped but I like to see what works best. As long as my nose doesn't get too crunchy I can deal with it.I found out that my oncologist will determine the morning of chemo if I will have it or not depending on how my incisions are rehealing.
I really hope I don't have to drag it out longer but it is what it is. I'm having the port put in 2 hours before my chemo appt too, it'll be a fun day. I have until Tuesday morning to heal.. send me the healing juju therapy everyone!
I already asked if I could get the Herceptin if I can't get the chemo but my nurse said no, bummer!0 -
Rockermom,
Ask your Dr. for emla creme for the port. Its a numbing agent that you put on an hour before your chemo appt. Your Dr. should give you a prescription for it. You would usually put in on at home, and then put saran wrap over it so it doesn't stain your clothing. Also, DON"T put it on with your fingers, or your fingers will get numb!! Just put a glob on over the port area, and cover it with the saran wrap.
Given that they are just putting the port in before your appointment, ask the surgical center to cover it with emla creme.
BTW, I love your avatar and screen name! Rock on!!!
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ChickaD, my icing strategy was as follows:
For my hands, I bought cheapo gloves from the dollar store and cut off the finger portion from below the knuckle. I brought a cooler from home and filled it with ice from the infusion center. I also brought latex gloves, (or any form fitting gloves) and put them on, then put the cheapo gloves over them, with my latex covered fingers sticking out of the gloves. Then, during the taxotere portion, I had the tips of my fingers immersed in the cooler with ice.
For my toes, I brought zip lock baggies and filled them with ice chips. I put on very thin socks, and used tape from the infusion center to secure the zip lock baggies to the ends of my feet, covering my toe nails.
I also chewed on ice chips, to prevent or reduce the # of mouth sores. I got really sick of ice chips, so I froze gatorade in an ice tray, and sucked on that. During my last 2 treatments, I brought frozen strawberries and chewed on those. You will need a friend with you to help feed you, because your hands will be immersed in ice.
You need to do the icing starting 15 min before the taxotere portion, till 15 min after! I have to admit I wasn't always vigilent about the 15 min after part, because by then, you are freezing!!!
Also, word to the wise.....use the bathroom right before you start this!!
This is a HUGE pain in the butt, but my I had no problems with my nails at all, and had very few mouth sores. At first, the nurses in my infusion center thought I was crazy, coming in with all my stuff. But, they became believers when I had no problems!!!
Good luck!!
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I did taxol, but the icing tips are the same. I iced my hands and feet for 3 months and really think it helped me. No nail issues, and only slight issues with numbness on my left toes which I think is due to me getting less vigilant with the foot icing towards the end.
But check with your chemo center - sanofi aventis provides special frozen gloves and shoes to the chemo centers for patient use for free. My chemo center had them. You then put on disposable gloves and feet (for hygiene) and then slip on the chemo center ones. That was the easiest, and I decided that if the company that makes the chemo provides the gloves then that's a good reason for using them!0 -
RockerMom: Ask the surgeon to leave the needle in when you have the port placed. I did that for my first one and didn't need Emla that time since I was already numb from the surgery. Definitely using Emla tomorrow for # 2.
Cgesq: Thanks for the tips. I'm using frozen peas for my hands. My infusion center never heard of this treatment either and they're laughing their heads off. Who cares if I keep my nails.
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Ok, I have all this awesome Emla and port advice.. they will ask me if I want a job again I'm sure!
Thanks so much you guys!I still haven't heard anything about a Neulasta shot.. My first chemo they said no. Why do some people get it and some don't?
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Surprisingly enough my port was accessed for Herceptin alone today and I didn't even feel the poke. They never use numbing cream so that was a surprise.
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Rockermom - I just had a port put in last week. It took about 6 hours after surgery for the anesthetic to wear off, so you shouldn't feel anything in that area when they access it two hours after surgery. To be sure, tell the surgeon you want to make sure it will be numb still for your first tx. Maybe he can inject a bit more anesthetic when he finishes?
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Latte, my port appt is at around 8am and my chemo is scheduled for 10 I think. I'm sure I will still be loopy and anesthesthetized but I'll tell them anyway I'm sure
Crossing my fingers I have chemo as scheduled, trying to heal my incisions yet again..0 -
rockermom66 I would be surprised if they took the needle out. I had my chemo the day after port surgery. (Surgeon wanted it the same day but there wasn't a chair available). He actually left the needle in for the next day. My port surgeon was such a sweet man.
As far as nuelasta. Some oncs wait to see if you need it. Some insurances won't even cover it if you haven't proved you need it. The shot is around $3K-$4K! I'm sure if it was $5 you'd get it.
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Wow my head is spinning...so much info to remember...thanks for all the tips ♥
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