Taxotere, Carboplatin and Herceptin
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Yep lovewins - i was shocked when he offered them - i asked him about it before I talked to my MO to make sure he would give me a prescription - I knew that insurance would pay for it but was curious about the cost. That is when he told me that he had never had anyone ask for them during chemo and he would love to hear a first hand experience and then told me he would compliment them to me - they sell it right there
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linda - I answered you on the other thread
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SpecialK - I saw and thank you!
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Linda: Wow I can't believe free Latisse. My ophthalmologist & my MO both approved the use of Latisse but my insurance did NOT pay for it. It was $160 for a tiny bottle so I only used it at night instead of twice a day. I used it on my lashes and my brows - although neither doc had any experience w/brows. It worked for both. Lashes & brows got a little sparse but I never lost all the hair.
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I know minustwo - that is why I am a bit disappointed in not be able to do it. My PS is a pretty young guy with a hip office. He specializes in breast augmentation and recontruction but he also does alot of other cosmetic surgery for the fortune 500 retirees in Sarasota county. Most of his breast recontructions are on much older women than me - 70's so I am the hip youngster to him at 57 I always come in with something funny like tassles where my nips should be or a flipeze hat on my head. Monday when the nurse marked my areas for the injection for the fill - they looked like eyes - she left the room and left the marking pen out - I got it and created a smiley face on my belly. He and she walk back in - undraped me and lost it.
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both taxotere and carbo can cause neuropathy. I had so much trouble with my eyes during treatment, that I can understand why no Latisse! Plus I didn't ever lose all my brows or lashes.
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Yep Linda - that is why my MO said he wouldn't suggest it as a good idea - he didn't think that it would have any negative effect on my chemo but was concerned that I might have more eye and tear duct issues because of it.
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Linda, I had to have my carbo reduced twice because of neuropathy. The idea is they want to give you enough to be effective against the cancer without causing permanent damage. It can be a fine line. Free Lattisse! wow, I think we all want that! I never could have used it during tx though because my eyes teared so much. In fact they teared for a full year PFC
BTW you sound like you have a great sense of humor
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bren58 - I have always been the practical joker in my family and I laugh now alot to stop from crying. I do try to find the humor in all that is happening to me because some of it is so ridiculous that it is funny ! But I more enjoy bringing a smile or laugh to someone else who may be having a bad day too - like yesterday i wore my wig to chemo - it is almost the same color as my hair and very close to the last style of my hair. So I told the PA that I was having an opposite Se to the chemo and that my hair was actually getting a little thicker - she was like Really? wow that would be a first!!. Then I said "yes Mam - I will be the first to have many things happen to me and I tip my hat to you that are taking such good care of me!!" and that is when I flipped the wig up LOL. She laughed so loud and said I can't believe you got me with that - turned to my daughter who was with me and said - Your mom is a pain in the ass LOL
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I am not sure if it was on this thread or not, but someone recommended something (vitamin) to help with neuropathy. The very last chemo round (last Friday) and the bottoms of my feet are numb and my finger tips are tender to the touch. Any suggestions?
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i just started con a methylated folate supplement, Metanx, prescribed by my fibro doctor, supposed to help with neuropathy, depression, pain, well see... Of course insurance doesn't pay, but check it out.... http://www.metanx.com. n
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ddgm - I took 30g of L-Glutamine, 1500mg of Acetyl L-Carnitine and a 100mg cap of B6 during chemo, with my onc's permission. My understanding is that less of the Acetyl L-Carnitine is absorbable, and there have been some studies that show it is not effective and can be dangerous at high doses, so using it may now be questionable. My neuropathy resolved between infusions for the first half of chemo, but did not after that. I continued with this supplementation and the neuropathy did completely resolve within a few months PFC. The only residual problem I have is that I can't wear heels for any length of time without discomfort, but that may be more strongly linked to Femara.
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Hi ddgm - based on SpecialK's suggestion to me - I am doing the B-6, the Lglutamine and the nurses recommended b12 also. All done with MO's ok.
Thanks linda - I will look that up.
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I took 100 mg B-6, 1000 mcg B-12 (which converts to 1 mg), & 1000 Acetyl L-Carnetine. I finished Taxotere/Carbo August 2013 and still have neuropathy in feet & hands. I haven't give up yet, but I really believe the neuropathy will be permanent. It started getting bad after tx#4 but the MO felt I should take the drugs as strong as possible since I'm not hormone positive and have no other recourses. I have continued with all 3 supplements with the approval of my neurologist but will look up the Acetyl L-Carnetine issue. Thanks Special
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minus - here are some studies and articles:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430690/
Here is one that showed less optimal results, but the dose was pretty big:http://www.ncbi.nlm.nih.gov/pubmed/23733756
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Linda you are so funny! Tassies where your nips were is hilarious!
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Interesting - the Mods just posted a new research paper that discusses Acetyl L Carnetine and other Neuropathy issues.
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minus - makes me wonder if ASCO is making that recommendation based on the study I linked. Crazy timing though, right?
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Hi, all!
I just wanted to pipe up here because I've been using Latisse for the past four years or so. I asked my MO if I could continue on with it during chemo, and he told me that it was no problem but that I should stop immediately if I noticed any eye irritation.
I've now completed 4 of 6 rounds of TCH and have been using Latisse throughout on both my eyelashes and my eyebrows. They have both thinned slightly, but not so much that anyone other than me would notice. No eye issues whatsoever.
If you do decide to use it, I HIGHLY recommend that you ditch the awful brushes that come with the kit and opt instead for a reusable angled cosmetic eyeliner brush (you can pick these up at Sephora or Target). The eyeliner brush is much thinner and more precise than the bushy brushes that come with the product, which makes it easier to avoid dripping any of the stuff anywhere near your tear ducts, and you can wash the eyeliner brush after each use to keep it bacteria-free (I usually dip mine in rubbing alcohol and then wash with a mild liquid soap before letting it dry overnight).
If you do your eyebrows and your eyelashes, put a total of three drops in the cap of the Latisse to spread around those four areas. Do NOT brush the Latisse directly onto your lashes; just dip the brush into the liquid and pretend you're lining your top eyelid with eyeliner. You don't need to do the bottom lashes - it's more dangerous and you're more likely to get some of the stuff in your eyes if you do. As for your eyebrows, dip the brush in the liquid and give each brow a good, vigorous swipe or two, making sure you get the product down to the skin as opposed to just leaving it on the top of your eyebrow hair!
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Thank you everyone for the suggestions on supplements. I will run those by my MO.
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Hi Everyone, Im starting chemo tomorrow, Im very nervous. I was reading some of your comments. I was wondering what Latisse means? I'll be getting TCH. I'm HER2 Positive. Had a double mastectomy in March. with reconstruction. Any advice on how to prepare? I'm so afraid of all the side affects. I don't know if i read it on tis thread or not, but someone said That they only Had TC?? thanks
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d - Latisse is a eyelash growing medication that is available by prescription. If someone only had TC then they were not Her2+, and that is a common regimen for them. On side effects, you have to take them as they come but remain in contact with your oncologist for mitigation of your symptoms. Listen to the instructions you are given and make sure you can get ahold of the onc office if you need them. Are you planning to ice your fingers and toes?
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I just took the pills They tell you to take before chemo, the day of chemo and the day after, Those are steroids as I understand! I'm not a fan of all the meds. Thats why I'm very scared of the chemo! Im takingDexamethasone 4MG.
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d - standard dosing of steroids. They will help you both with allergic reaction and nausea - they give all of the meds because they help, so don't worry too much about that.
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Dilli - I was a super natural, anti drug type of person before all this happened. But now I am SO thankful for the medications that have allowed me to BEAT the cancer and live a full, active and happy life. It is a bit of a mind-switch in the beginning, I understand that. But you are not dealing with a splinter in your finger or a minor infection - this is a very serious disease and it is important to 'throw at it' everything we can to destroy it.
I am five years out now. The memories of treatment (which was difficult but not unbearable) have faded so much, I can't believe it.
You really do not know how the medication will affect your body - you will read about all types of side effects (SE's) on here, but only a few will affect you. For example, I did not have any nausea, taste changes, nail problems, or eyelash loss. I did have other things, but I could manage. So try not to take everything that each person writes and personalize it - it will quickly become terrifying and overwhelming. Just take one day at a time - see how your body reacts and then come to this thread with your questions and concerns and the wonderful women here will help you. (And call your onc for anything serious, of course.)
With four children to look after, I would encourage you to take a long-term view. Focus on the fact that everything you are doing now is to beat the cancer, give you a long, healthy life, and allow you to dance at your kids' weddings and be a grandma to their babies, and die in many many years as an old old lady. That is the image that I kept in mind when I was going through it, and it helped a lot to get past the temporary discomforts.
Realize that the steroids you are taking may interfere with your sleep. You may be up for a few hours the next few nights. Do not be alarmed - just have your IPAD or good book nearby and relax until you feel drowsy. In a few days, they will leave your system and you will sleep fine again.
The actual day of chemo is pretty uneventful. You just basically sit there. Do you have a port? If so, be sure to put your Emla cream on an hour (or two) ahead of time to numb the area. Other than that, bring a book, ipad, snack, water bottle (you need to drink a LOT of water to flush the drugs from your system), maybe a blanket (sometimes you get a little cold in there) and plan to relax, doze, take it easy, and you will be home again before you know it.
Sending love and support to you - I know how scary it is the first time, but you WILL be ok. PM me if you have any questions or if there is anything I can do to help.
Love - Amy
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dilli- I'm getting round 2 on weds. These ladies have been incredibly helpful to me!
Tomorrow will probably be pretty boring, just long. I'm getting tch + p, so it's a long long day. But it's not painful, and you're probably not going to feel any different tomorrow night than you do today. It's weird. They're putting all these drugs into your body, but they don't seem to do much for a couple days.
My txs are on weds. I felt SO normal until Saturday. On sat it was just tiredness and very very mild achy body from the neulasta shot. I started feeling better Sunday and was normal Monday.
My worst se was taste changes and diarrhea. The d wasn't even all that bad, it was just dehydrating. That's bad. Water water water. I also went in twice for just saline in the port. Made a huge difference. I also get wicked headaches from zofran, but find compazine ineffective for me, so I now take 2 excedrin migraine (with my mo's blessing) when I take zofran. Worked like a charm. No headache, no nausea at all.
I wish I had a magic cure for the taste changes, but I'm still struggling there, and trying everything I can. Mugard seems most effective for me. Biotene helps the mouth dryness but it tastes really awful to me.
I did also get the god-awful stomach bug going around my kids' school, and that set me back for an additional 3 days, but if it wasn't for that, I really feel like this is manageable. I feel AWESOME today, and have felt like this for a week. If you look back in the thread, you can see where I hit rock bottom, but the next day is when I made med adjustments, got a saline iv and a single dose of steroids. Everything turned around after that (except the taste issues). You'll have more good days than bad, even with se's.
The good news is, the vast majority if the se's can be managed, and the treatment will be done sooner than later, it just doesn't feel that way when you're staring down the start of 18 weeks of hell. I'm finding hell hasn't been as bad as I thought. I'll be thinking of you tomorrow!
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love how they only recommend prescription drugs... >ugh< not found anything to help my nueropathy yet
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my Onc now says I will need a twice yearly shot to improve my bone density - shouldn't i be tested first to see if i need it?? anyone else been told this?
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Is your onc talking about Prolia? You should not have it if you don't need it, and yes, the way to determine that is through a bone density test. It is also quite expensive and your insurance will most likely not cover it without a test-based need.
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Thanks to all you ladies, You guys are awesome and know so much! I know very little. I don't know about the icing of the hands and toes. What is that? Ill ask the nurse today. But I did here about the Ice cap. Anyone had the Ice cap. I did hear it is brutal. You have to keep it on the whole time. they put a frozen one every 20 min. I'm not sure if that is correct or not. Anyone know more about it? Amy you are so right everyone is different and we al have different reaction. I know I'm Making myself so worked about about it. I have to still come to terms of how serious this is. And How lucky I am that it could have been worse. But I can't help being scared. You ladies are great! SpecialK you seem to know so much! Thank you and good luck to everyone!!! XoXo
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