Taxotere, Carboplatin and Herceptin
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Not - I had close margins in multiple places (< 1 mm) despite having a mastectomy. I was told my chance of local recurrence without radiation was over 15% and that rads was indicated.
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Rickysgirl.... I did fine until #4 and I'm trying to find out how to prevent it next time, so I can tell you what I figured out so far, but it's just my opinion from listening to others.
First, it is cumulative so the SEs usually get worse as we go. SO, we need to be prepared for that with support people or phone #'s "just in case". I was alone when I got very sick from #4 and I freaked out and called 911, which turned out to be a good thing because at the hospital they hydrated me IV with anti-nausea meds, and I felt SO much better in just a few hours.
Hydration is a big thing according to others at the center I go to. If it gets tough, which is different for everyone (some have it tough from the begiinning, and some breeze right through it without SEs) they said to get hydration before the chemo and the day after.
In the beginning I was drinking a lot more. It gets harder to drink enough, for me anyway. Drinking a LOT of water is very important.
Then, I just found out from the wonderful women in here many oncs will lower your chemo if you can't handle the SEs. I'm going to ask for that tomorrow!
I'm not sure what role steroids plays because that was the first thing the onc said he'd lower. I gained over 20 pounds! So, I'm probably getting too much steroids.
Keep asking questions to your onc, the nurses, other women at the clinic and in here. They don't tell you these things because they don't want to scare you, but knowing ahead of time is very helpful to me! It would've saved me a trip to the ER.
{{{{{{HUGS}}}}}} Gina
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BTW you don't have to just drink water. Liquids without caffeine or salt count. It could be soup, juice etc.
Steroids are supposed to help with some SE. I was only allowed to take them right before and day/nigth of chemo (I think). They actually kept me from retaining fluid. As soon as I stopped I turned into Violet. I loved the steroids.
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Two quesstions...
How do you get into the chat rooms? I don't see a link to click on.
And did anyone not get reconstruction and their mastectomy hurts after 7 or so months? It's cut right down to the bone in the middle and skin sparing on the sides. Are there exercises or massages I'm supposed to be doing? Or is there a discussion group for that in here?
Muchas gracias Senioritas!
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not - keep in mind that in order to gain each pound and have it stay, you have to eat 3500 calories in excess of what you would normally eat and then not burn it off. The weight you have gained is most likely fluid, which will come off when you stop receiving chemo. It is doubtful that you have gained 20 pounds of actual "weight" as you would have to be eating practically non-stop to do so, like more than 5,000 calories a day. If you stop the seroids you may actually gain more if you swell from the Taxotere.
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I am now 11 days out from my first treatment. I feel so normal- it's really nice! For the most part I have had 1 day of being really tired, then, nearly a whole week after chemo I got terrible bone/ joint pain. The Dr gave me an anti-inflammatory shot that helped a ton. I also lost my taste already- that part really sucks! Now I am just sitting around waiting for my hair to fall out I guess, but so far no signs of it happening.
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Damiana I had an appointment at the wig place to cut my hair off on day 16. The morning of day 15 nothing. I called to cancel my appointment and they said keep it. Sure enough later in the day it started. Very weird.0
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Ahhh that is crazy! I have been fine with everything else so far and I am really hoping that I am okay with the hair thing as well.
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I was OK with the hair thing… granted I did look like crap without hair. Did not have a nice shaped head. I looked great in scarves so I was OK with it. Only issue was matching the scarf every day to the outfit.
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Yea, I have thought about what a pain in the butt that will be. My mom made a bunch of scarves for me but I might have to buy new clothes just to match my scarves! Lol!
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What are the amounts of drugs you guys are getting? I think they're going up each time. I started very low and now it seems very high.
On Chemo #3 or 4 I got:
Docetaxel 129 mg
Carboplatin 746 mg
Herceptin 123 mg
That sounds really high to me, since I started at Taxotere 75mg, Carboplatin 6mg and Herceptin 4mg
I have no idea how much steroids I get.
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Just an FYI on scarves. Cotton is best. Silky ones are too slippery. Rayon ones can be slippery too. I found I liked the big ones. If they were square I would fold them in a triangle then put the wide end at my forehead with the point going down my back. Then take the 2 ends and tie them in back. I like the long look. It took the place of hair.
I really liked the scarves from this place: linky. I would wash & dry in the machine and they still retained their color. I found the darker ones with low contrast colors and larger patterns worked best for me. The Koi were my favs.
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You are confusing how the drugs are dosed. They are based upon body surface area:
Tax: 75 mg/m2
Carbo: 6 AUC (area under the curve)
Herceptin: 6 mg/kg if 3x wk, 2mg/kg if weekly
They do a mathematical formula based upon your body surface area to figure out exactly how many milligrams of each drug you personally should have. Each person will get a slightly different amount of drug based upon their height and weight. However the basic protocol of amount/body surface area would not be different from pt to pt unless the doctor has modified/reduced the dosage as is done at times. I hope that helps. I can get you the actual formula to convert each one if you like - I figured all my dosages out b/c I wanted to know exactly what was going into my body. Your actual dosages are not that different from mine, so we probably have similar body surface area.
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Does everyone get the fingernail problems? I noticed the other day a few "fine lines" in a few of my nails, but that's it. Also, about hair. Mine, of course is gone, and I have had no need to shave my legs or pits, and the fine hairs that were on my arms are minimal. I haven't lost any brows or lashes? Do some people NOT lose these, or are they just slower to lose than other hair? My SE's usually kick in 2 or 3 days after chemo, last for 5 days, and then...........nothing. I haven't had any other problems, except for a minimal fever I seem to run at night, which is brought down with one dose of Tylenol. It subsides usually after a few nights. This time, it ran for 4 or 5, now my temp has been running at 97.4 or 5. Any thoughts or info on all this? Thanks so much.
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Damiana, I was always slightly off the profile of most. So my hair did not start falling out until after my second tx . In fact I was in the hospital while it was falling out so I couldn't get it cut until I got home. But in one afternoon, I got this huge pile of hair out. My scalp hurt till I got it shaved and my wig fitted. I wore a lot of scarves, and my favorite head covers were the fitted hats, like beaubeau,and hats with heart, that are made up and you just plop on. I had a black and white large print one I could wear with a lot, and a teal one I wore a lot too. Also got a couple of the soft knit ones, I wore inside the house or for sleeping if I got cold. Look at your hospital pharmacy or gift shop, sometimes they carry some and really aren't any more expensive than anywhere else, and besides, you're already there. My hair right now still short, I still wear them. Much love
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rickysgirl - are you icing your nails? Not everyone has nail related SEs. The lines you are seeing will most likely correspond to the number of tx - one line for each tx. These are called Mees Lines, and are an indication of "poisoning" which is why they usually equal the number of tx. I did not lose my eyebrows, they just thinned. I did not lose all my eyelashes but what I did lose was slower than my hair. I had to shave my legs all through chemo, just not as often.
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No, SpecialK, not icing. I didn't learn about that until after my 2nd treatment and I'm getting ready to go for my third. I must have missed that on here until recently. For some reason, I have gotten a little better about the hair loss. It's kind of tough for me, but then I remembered I still had brows and lashes to go. I just wondered if it might be possible that I'll make it through this with those still intact. I think, in the grand scheme of things, my Se's haven't really been all that bad. The first time was the horrible hangover feeling, and my onc said no more steroids, and I didn't have it after the 2nd. Then the 2nd time was the unbearable hiney and vajayjay skin burn, along with really bad abd cramps, but that cleared up in about 4 days. I have never had N/V, I had the big D after the first but not since, and my taste came back almost as quickly as I lost it. I'm really hoping I get a "pass" on the brows and lashes.
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hiney and vajajaaa!!!! hahahaaaaaa lol
Thank You for the laugh Rickysgirl!
Sorry! I hope you're feeling better! ;-)
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Rickygirl I never lost all my eyelashes or eyebrows while on chemo. They got knocked out 5 weeks PFC when the new hairs started to grow in. I was never totally without eyebrows. Yes I lost all the other hair. Get ready for a free Brazilian. Nose hair goes too. The nail lifting is rare but what your experiencing does happen. I never got the lines.
FYI I stated to have toenail bed issues after tx 2. Pain in fingernail beds after TX3. You might be OK. Icing didn't work for me.
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It's o.k., not. We gotta laugh where we can get it, right? I'm fine now and certainly hope youa re, too.
We'll see what next time brings. It's kinda like that proverbial box of chocolates.......you never know what your gonna get.0 -
Thanks for understanding Rickysgirl
I haven't heard the word hiney since I was a teenager 40 years ago! My boyfreind was German and he said it so funny it I would make him say it over and over just to laugh. And, I agree, we never know what we're going to get. That's where Pema Choron's book "When Things Fall Apart" really helped me learn to let go and accept uncertainty.
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Has anyone tried benonite clay to draw the toxins out of your skin? Or any other detox treatment?
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Yesterday was day 14 and my hair was coming out in clumps so I had it shaved. I was very surprised that with all the hair that came out, I had no actual bald spots- it is all stubbly. The scalp pain has stopped but it is still very itchy. I guess that will stop when all my stubble comes out. And BURRRRR! it is really chilly without hair! I have a wig and some scarves and hats but I am still very nervous about actually going somewhere. I have a meeting today that I can't avoid and it is really giving me some anxiety. I will get through it but still- bah!
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Damiana, I kept my stubble, but that's all there was for a long time its started growing back 3 months PFC, but I was on Herceptin til a couple weeks ago, that slows things down. And the itchiness goes away after a shower or two. But the actual pain, before shaving my head, I really didn't expect that. Just weird.
Just SMILE and rock your hats or scarves! much love0 -
Damiana, I kept my stubble, but that's all there was for a long time its started growing back 3 months PFC, but I was on Herceptin til a couple weeks ago, that slows things down. And the itchiness goes away after a shower or two. But the actual pain, before shaving my head, I really didn't expect that. Just weird.
Just SMILE and rock your hats or scarves! much love0 -
Damiana, I kept my stubble, but that's all there was for a long time its started growing back 3 months PFC, but I was on Herceptin til a couple weeks ago, that slows things down. And the itchiness goes away after a shower or two. But the actual pain, before shaving my head, I really didn't expect that. Just weird.
Just SMILE and rock your hats or scarves! much love0 -
Damiana, I kept my stubble, but that's all there was for a long time its started growing back 3 months PFC, but I was on Herceptin til a couple weeks ago, that slows things down. And the itchiness goes away after a shower or two. But the actual pain, before shaving my head, I really didn't expect that. Just weird.
Just SMILE and rock your hats or scarves! much love0 -
Damiana, I kept my stubble, but that's all there was for a long time its started growing back 3 months PFC, but I was on Herceptin til a couple weeks ago, that slows things down. And the itchiness goes away after a shower or two. But the actual pain, before shaving my head, I really didn't expect that. Just weird.
Just SMILE and rock your hats or scarves! much love0 -
damiana just walk in with confidence and forgetaboutit. Seriously if people see you smiling and acting like yourself they too will feel more comfortable… and if you're in your wig most people won't say a thing. Make sure your make up is on correctly. If your face looks healthy the hair doesn't matter.
I know when I wore my long scarves strangers would tell me the loved my "look." They had no idea that I was bald and going through cancer treatment. I wore big earrings when I wore the scarves.
I live in a high-rise so I couldn't really hide. No one said anything to me granted they figured it out. I had shiny straight hair that I wore in a long bob. Now I keep it short. Just easier. BTW people love the short too. When I started to go topless is when people started to comment on my hair and how good the short looks on me.
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Damiana, I kept my stubble, but that's all there was for a long time its started growing back 3 months PFC, but I was on Herceptin til a couple weeks ago, that slows things down. And the itchiness goes away after a shower or two. But the actual pain, before shaving my head, I really didn't expect that. Just weird.
Just SMILE and rock your hats or scarves! much love0
