Anyone on just Taxotere and Cytoxan?
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Adnerb - The store where I purchased my wig at the hospital specializes in hair loss. They sell a three-part scalp treatment program by a company called Rene Furterer. My sister wanted to support me in some way when I had my hair buzzed there (I wouldn't let her shave her head when she offered), so she purchased the treatment system for me. It's designed to be used when your hair is falling out continuing while it's gone. Once the hair begins to come in, they have another treatment they recommend but I'll learn more about that one in the months to come. Anyway, you might want to Google "Rene Furterer" dry scalp treatment. The products are amazing and I think would really help you. If you want more details, send me a PM and I can let you know more.
Mary - I've said a prayer for you. I feel like all is going to be fine. Please let us know. Stay strong!
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Adnerb - The store where I purchased my wig at the hospital specializes in hair loss. They sell a three-part scalp treatment program by a company called Rene Furterer. My sister wanted to support me in some way when I had my hair buzzed there (I wouldn't let her shave her head when she offered), so she purchased the treatment system for me. It's designed to be used when your hair is falling out continuing while it's gone. Once the hair begins to come in, they have another treatment they recommend but I'll learn more about that one in the months to come. Anyway, you might want to Google "Rene Furterer" dry scalp treatment. The products are amazing and I think would really help you. If you want more details, send me a PM and I can let you know more.
Mary - I've said a prayer for you. I feel like all is going to be fine. Please let us know. Stay strong!
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Hi Mary-Prayers coming your way - let us know.Love,Valerie0
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Ladies - I'm writing to give you all encouragement. I did 4 xTC and suffered through MANY side effects. There were times when I did not believe I could make it through....I couldn't see past my nose in all my misery. I am now 9 wks post final chemo and feel really, really good. Energy is back, working out again, spirit is up AND hair is growing in more and more each week. I am so grateful for each day that I feel good and healthy. You all will get there too. Stay strong and patient.
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Thanks, Revricki, for your words of encouragement.
I have more hair questions: My husband gave me a buzz cut two weeks after the first round. By that time it had already thinned, but since I had a lot of hair to start with, it still looked like I had normal thickness. And then of course more started falling out. Today, after the fourth round, I look pretty bald. But if you look closely, I am not completely bald. There are a few thousand hairs scattered evenly on my head. I'm hoping these are the stubborn hairs that wouldn't come out. I'd hate to think that they are new hairs!!! I still have 2 rounds left. So I don't expect to find new hairs a month or so after the last round.
Am I right in thinking this way?!
Thanks, all.
Brenda
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Sugar, thanks for your suggestion. That might help after chemo. My ONC wanted me to stop using Ovation. He thought that might be the culprit. So I don't really want to try another hair repair system until a month after last round. For me that will be in March. But thanks again for your input. I really do appreciate it.0
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Hi Ladies -- Just wanted to report in about my 6th and FINAL T/C treatment. It was a doozy ...
They always start by hanging a huge bag of fluid, then they give me a bag of benedryl and Aloxi w/ IV push. Next comes a bag of Decadron. When that's done I get the taxotere. As soon as they took the bag of taxotere down but before they started the cytoxan, I started coughing and then sneezing. 2 seconds later I was red-faced, sweating, heart racing, throat and face swelling. They descended on me w/ 50 mg benedryl, oxygen, blood pressure cuff, oxygen monitor. They have me a nebulizer to open me up. The doc sat behind me for the duration with stethoscope on my lungs. About 5 or 10 mins later my pressure was down, my throat was opening and everything was receding. It was damn scary to have a reaction like this to a treatment I'd already had 5 times ... I was stunned.
They hung another bag of fluid and when I looked and felt recovered they started the cytoxan. But, since I'd sort of plateaued and was still itchy and a bit swollen, they took it down. I think I got about 1/3rd of a dose of cytoxan. They gave me a shot of solumedrol (more steroids), watched me until the final bag of fluid was in and released me.
So, I guess that's 5 and 3/4ths of a treatment instead the full 6. Enough for me, and apparently enough for my oncologist.
Now I'm high on benedryl and steroids, feeling 99% recovered from the reaction. It was the taxotere, which has been behind the various skin, sinus and tear duct reactions I've been having since tx #2.
I was the 2nd person to "have a reaction" today in a 20 minute period. They really were besieged but they move incredibly fast. this has never happened before while I was there.
So, now I will have 3+ weeks of crap, skin rashes and finally overwhelming fatigue ... it'll be good to watch as that nasty stuff falls away.Next month I go back to "talk about hormones" (read Tamoxifen) ... I'm glad I get a break between now and then.
Hang in there everyone! It's all do-able, certainly not fun, but all of you will make it through.
Lottie
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Lottie - wow...sounds like you had quite a time. Sorry to hear. Perhaps the side effects will be minimal this time. Let's just think you had all the side effects during infusion!! Hang in there and now you are done.
I have a friend who's been on Tamoxifen for the past four years and she has one more to go. She's been taking it since she was 42. She says it's not so bad so hopefully it'll be okay for you, too. Unfortunately being hormone negative, it won't do a thing for me so I won't get to take it afterward. Hopefully some day there will be something available for hormone negative BC.
Sherri
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Thanks Sherri. Triple negative BC like yours is definitely a completely different animal. That was the breast cancer that Robin Roberts from Good Morning America had a few years ago. I know there's lots of information about it online and I wish you the best in your treatment and recovery.
It's nice to think that side effects may be minimal and I'll keep my fingers crossed. Something tells me I'll be in for a few nasty weeks, but, just a few and then I'm on the road to some healing.
Best,
Lottie.
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G-d Lottie That sounds scary and AWFUL!!!! But it was the last one (out with a bang I guess). I am off to #5 tomorrow and one more in 3 weeks - ugh. Sick to death of it-oh well-here is to hopefully lesser se s - ! Valerie0
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Brenda, I have had TC x 4 and also go my hair buzzed after the first tx. I am two weeks post 4th DX and I never lost all my hair. Of course, it is all the way to the scalp, but it is still there. I do have some bald spots, but I think it would have been interesting if I had not buzzed my hair and left it an inch or two long. I still have my eye lashes and brows, arm and leg hair. It has all thinned and as pretty much quiet growing. Good luck to you.
Lottie, sorry to hear you had such a bad time of your tx. I have heard of women having instant reactions, luckily I tolerated it just fine.
valerie, good luck tomorrow. Hope you have very mild SEs. I will keep you in my prayers.
Sherri, I hope you are doing fine today.
Thanks revricki for the update. I finished two weeks ago and it is good to hear that I will just start feeling better and better.
Mary, keeping you in my thoughts, hope all goes well.
Juannelle
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Lottie-
Oh, my how scary for you. I was under the mistaken impression that they are able to tweak things as you go along and while the fatigue gets worse, some of the side effects get better from treatment. How naive as tomorrow is my first treatment. Your experience will be another thing for me to ponder at 4 am tomorrow morning. Sleeping is harder this week as I am getting cranked up. So sorry it happened to you. It is comforting to know that they were so quick to react in such a scary situation. I am hoping mine will be as simple and pain free as possible.
Barbara
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Good luck bbd-where are u getting tx/ I go to mgh and I go tomorrow! Here's to you-hope it all goes well -Valerie0
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Valeriekd-
I am at Newton Wellesley. Here's to an "easy" day for both of us.
All the best-
Barbara
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Barbara - good luck with your treatment tomorrow. I've had two of four so far. At my hospital they've put my finger and toenails on ice during the Taxotere infusion. If they don't automatically do that, you might want to consider asking them to get you some ice. I think it helps so the nails don't go wonky.
Sherri
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Barbara: Just remember that each person reacts differently to treatment. You are a thumb print. I thought that TC was going to be a breeze because AC was relatively easy for me. Boy, was I wrong! I know women who sailed through TC. You could be one of them!
Valerie: Tomorrow might be a better round for you. Who knows? I had extreme diarrhea after the first 3 rounds. This last round was a lot better, thanks to a new prescription. I only had to take one tablet. What was that all about, I wonder?
Sherri: My first Dx was triple negative. I thought I had it good because I did not have the tamoxifen nor the herceptin.
Lottie: So sorry to hear about your episode. It could have been worse, you know. It could have happened during round one! It waited until you were almost all done, and you were right there where you needed to me, among medical professionals. Just imagine how bad it would have been if you had an allergic reaction while driving yourself home!
Juanelle: Let us know when your "lost" hair starts growing back. Are you going to get more treatment or are you all done?
Rest well, ladies...
Brenda
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Barbara - will be thinking of you today - wishing for minimal SE's for you.
Also - about the allergic reactions - they usually happen at the beginning of the infusion if they happen at all. They usually watch carefully for them and jump right on them the way Lottie's team did. IF you have a reaction, they will start giving you premeds before future infusions - they gave me Benadryl and Pepcid (which is actually an antihistimine.) In my case, during my last (4th) tx, I still had another reaction. My nurse stopped the infusion immediately, gave me more Benadryl(I think - ha - can't remember), waited for my symptoms to subside, which they did quickly, then restarted the infusion at a slower rate. After a little while, she increased the rate again. I was fine. Sometimes it's the infusion rate being too fast that causes the problems. If you get a headache from the Cytoxan, they can slow the rate down for that. Make sure you tell your nurse how you feel so she can make adjustments to try to help you feel better.
Lottie - congrats on being done! Sorry you had such a scary time with this last one. Wishing minimal SE's for this final go-round for you as well!
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Thanks everyone. That reaction yesterday was a real shock and scary. I'm fine today but since they gave me extra steroids this time, I'm up early and full of energy. I expect to be this way for a day or two so I'm trying to get some extra work done. I'm sure I'll be queasy this weekend, itchy next week, and tired the week that follows.
bbd don't be too concerned. everyone is different. I'm very sorry that my story added to your anxiety. I'd been having skin-related reactions to taxotere since my 2nd treatment and they'd been getting increasingly worse ... my docs and I were expecting that I'd get these skin rashes again, probably at their worst after this last treatment, but the reaction I had during the infusion was a surprise to everyone. And, I wish I'd had an indication as soon as the taxotere started flowing that something was wrong, but the reaction didn't start until after the bag was empty.
Valerie -- good luck today! i know exactly how you feel. chin up! you're in the home stretch.
Lottie
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Lottie - You did it, sister! Congratulations on finishing. You're on the way to the sunny side of the street.
Valerie, Barbara, Sugar, Chynadollsmom, Juanelle - and anyone I missed: Thanks for your support. MRI is tonight at 6:00. The radiation onc made me feel a little better - says she will be surprised if the leision is cancer. Says it could be, though. So the test is a good thing.
To all of you who are starting or who are in chemo treatments now: You can do this - hang in there. Yes, scary things do pop up from time to time. But be assured, help comes just in time. Never late, and always just enough. Ask any of us who have been there - it's remarkable. I think it's a God thing. You may choose to believe whatever you wish. But be assured - you'e going to be OK. If a goofball like me can muddle through, be assured that you can, too.
Much Love, Mary
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For the stage I folks on TC, what was your oncotype scores? Mine is 13, stage I, no nodes, and oncologist is recommending CMF chemo while another oncologist recommends ovarian suppression. Any thoughts?
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Hi AL - My oncotype score is 20. I did chemo, and feel it was the right thing to do. However, 13 is a low score - do you know why the onc is suggesting chemo? Best of luck with your decision. Let us know what you've decided.
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I'm too am surprised to hear that your onc recommended chemo with such a low oncotype score. My score was a 22 and my onc recommended AGAINST chemo. I decided I had to do whatever I could to keep my recurrence as low as possible and decided to go with chemo. I know if I didn't have the treatment and my cancer came back I would always question my decision for not doing it to begin with.
I've had two TC treatments so far and it really hasn't been so bad, I only have two more to go and then on to radiation (which I'm REALLY not looking forward to). Even after losing my hair and being stuck at home A LOT, I would still make the same decision today.
Good luck making your decision.
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My oncotype score was 26. That combined with my age (young at 51?), and the size of the tumor, and my oncologists' recommendation made my decision to do the treatment. My oncologist feels that since TAC chemo treatments are normal 6 sessions and that women doing TC should do 6 as well. He only stops at 4 if patients develop severe neuropathy. I'm glad I did 6 (although I didn't get the entire dose of Cytoxan during the last session). Now I know I've had the maximum amount of chemo for the disease at this stage. If it recurrs it won't be because I didn't do my utmost to prevent it.
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Mommaof2 - we're on the same schedule for chemo so I'm thinking we'll be having radiation at the same time, too. I got a call the other day from the radiation oncologist to go in on Feb. 2nd to get things started so I can begin around March 8th (one month after my last chemo treatment).
AL1841 - I didn't have an oncotype score done. I think it's because mine was hormone negative; however, I'm not sure if they do them in Canada. Either way, my oncologist said I'm in a grey area and the choice was mine but he did recommend it. I wasn't given a recurrence score but when I pressed he said the chemo would reduce my chances of a recurrence by about 3-5%. It didn't sound like a lot but I knew I needed to do whatever was available to me and with being hormone negative...chemo is really all that is available as Tamoxifen won't do anything for me.
TC hasn't been as bad as I thought it would be.
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My oncotype score was 26. That combined with my age (young at 51?), and the size of the tumor, and my oncologists' recommendation made my decision to do the treatment. My oncologist feels that since TAC chemo treatments are normal 6 sessions and that women doing TC should do 6 as well. He only stops at 4 if patients develop severe neuropathy. I'm glad I did 6 (although I didn't get the entire dose of Cytoxan during the last session). Now I know I've had the maximum amount of chemo for the disease at this stage. If it recurrs it won't be because I didn't do my utmost to prevent it.
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Hi Sugar77 -- Unfortunately there isn't an oncotype test for triple negative breast cancer. You're wise to do everything you can to prevent recurrance. Best of luck, minimal SEs and all the best for the rest of your treatment!
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Brenda, I am through with chemo and will do rads. I have my rad onc consult tomorrow, so I should start rads in about two weeks. I will let you know with my "lost" hair, starts to grow back. I think it will at least be another month.
AL141, my OncoType DX was 25, I did TC x 4 and finished on 12/14. If my score had been 13, I would not have done chemo. I did it because I was high mid point and wanted to know that I had done everything possible to stop this monster. Chemo is very doable and I was very fortunate that I didn't have really bad SEs, but I don't ever want to do it again. Good luck on making your decision and you just need to do what you feel is the right treatment for you. If you think chemo is the way and your doctors are recommending it, then go for it. We will help you through.
Mary, hope everything goes well with the MRI. I know you are anxious, hoping it is not anything serious.
Good evening to everyone, hope you are all staying warm and cozy. I know it is really cold here in Texas. Good luck to anyone having a tx this week, hope all goes well.
Juannelle
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I'm also triple negative so I dodn't have the oncotype test. My onco recommended chemo because of the TN and my tumor was over 1cm (actually 1.9 cm). I just finished four rounds of TC on 12/14 and my last tx hit me the hardest. Now that I'm almost 4 weeks out I feel much better and have started rads.
I wish you all minimal SEs!
Be well, Sido
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Wow, I haven't had a chance to read the posts on here for a couple days and see that a lot's happened! Lottie, I can't imagine how you felt when you had such a bad reaction. Mary I'm glad your doctor felt that it probably isn't cancer. I've been praying that it's not and/or that it's gone! I pray for everyone on here. I feel like we're all family even though we don't know each other.
Brenda, I'm 5 weeks out from my last TC. I never lost all my hair either. It thinned all over and I developed bald patches especially at my temples and on the sides of the top of my head. I've noticed in the last couple days that hair is now growing on those bald spots. It's not much more than stubble, but it's there! I can't tell if I have a full head of hair or not because my hair is sticking straight up as it grows. The majority of my hair is about 1/2 inch long. You can definitely see my scalp and the shape of my head, but then again like I said it's all sticking straight up. I'm taking that to mean that it's growing back in as curly as it fell out. Darn! Can't tell color yet either.
I'm triple negative also. My oncologist recommended chemo because triple negative is more aggressive than regular breast cancer, and the chemo raised me from a 30% chance of recurrence to a 20% chance. He told me that honestly, the surgery alone could have cured me 100%. Or surgery and radiation. But since he can't predict the future he wanted to hit this thing with as much as he could because like someone mentioned before, tamoxifen won't help triple negative bc. I'm living my life in faith that God, through the hands of my doctors or through His own divine hand will get me through this battle. If I worry too much about recurrence, then it's still won -- and I don't want to let that happen.
So far so good on my radiation. My doctor told me by Monday I'll probably be "sunburned." This evening my breast felt a little tender, but I've been using the pure aloe gel that I got at the health store faithfully, and it seemed to even reverse the tender feeling I had earlier this evening. I've had 10 treatments so far -- 25 to go, I believe.
Hope everyone can enjoy their weekend. I think we're going to spend ours shoveling snow! We're under a winter weather advisory until Saturday. Take care - Anne.
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Thanks for all the support and good wishes. My first treatment went much better than all my worries anticipated. Outside of a metallic taste and being awake since 3 am, I am fine. I know that the nurse and doc suggested the weekend might be more problematic as I wean off the steroids, but so far so good.
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