Taxotere, Carboplatin and Herceptin
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Hi, Everyone - and welcome Special-K..so sorry that you have to be here, but I am glad that you found us!
I have been reading -just not posting. Like Cindy said - there is life after chemo (and in between herceptin treatments) and I am enjoying some time with my honey out here in Nebraska. I found an onc here that I like and he will see me through until I go back home to Maine sometime in May. Right now I am playing nurse maid because Bob has the flu. When his doc heard that I was on herceptin, he wrote me a script for tamiflu to head anything off at the pass for me. I thought that was nice - we got two visits for the price of one!
Bob wanted me to set the record straight about my hair - it isn't as bad as I make it out to be. He measured it and said at my shortest, I have a good inch-and-a-half. I have been taking the same supplements that carried me through chemo as well as using the Nioxin products and taking biotin. I have that short, flat-to-the-head chemo style, which may women wear out in public and they do it well, but it is just not for me. So, I still wear my wigs. I miss my long hair - that's for sure!
I started tamoxifen and I had one hot flash. I take it in the morning cause that seemed like a good time for me. My period is due in a week or so here - so it will be interesting to see what it does to that. Hopefully, nothing. Chemo only made me skip one or two and it was right back. I am young so the odds are good. I never thought I would miss that, but anything that goes back to before cancer is a welcome thing, for sure!
Congats on the nipples, Carolina! Tell us about them - are they tatts or will they look like real dimensional nipples. You would think that if they can give them to a man, they can recreate them for us.
Congrats, Terri on finishing chemo. How is rads going?
How are Good Vibes and Fawn? I know Fawn finished chemo - way to go girl, hope it was not too terrible for you.
Leslie2...how are you? Sorry to hear that you had such a rough patch. I'd say screw the last treatment, too! I felt that way at the beginning of the treatments!
Katy? Terrirites? Sarahlousie? Chemomom? Lesilie? I know I am missing more of us - what's up with everyone?
Glad I could catch up with everyone - take care!
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Special K, Sorry to be so late to respond to your post, but i have't been over on this thread in a while. Back to work full time and time is hard to come by. But I had to post this to you-- be VERY careful of going on birth control!! I was not ER or PR + but my onc said regardless, I should stay off any kind of birth control that uses hormones. My gynecologist agreed. They said there was no way they would prescribe them for me. So just be sure to check it out and maybe double check with them.
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As a general update on me, I am still banging thru rads. i had a TERRIBLE TERRIBLE burn and had a full week off. But I have skin again and went in again for tx today. Only 5 more rads!! And I had another herceptin tx- this time I requested tylenol and benedryl and had no flu-type issues. But I do have watery eyes and nose still. And last friday, after being 2months post chemo, my stinkin eyelashes fell out! But my hair on my head is growing very quickly. Go figure. And doggone it! I did get my period back. Rats!!
Glad to see we are still hanging in here on this thread. It was so helpful to me when I was first starting tx. Welcome to all newcomers. It's a crappy club, but we sure do "get" each other! Priceless. Have a good evening ladies. Off to have dinner with my boys.
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I have about 12 more radiation treatments to go. My skin is turning pinker and itches. My rad onc only prescribed the use of cornstarch. Now that I have some itchies I am allowed to use hydrocortisone ointment. At my weekly exam, I was told "I'm right where I should be at this point".
I am almost eight weeks past my final chemo. My blocked tear ducts are starting to unblock finally. I've noticed a definite decrease in the watery eyes over the past week. I'm happy this side effect is finally going away.
My bottom eyelashes are all gone and haven't grown in yet. My top eyelashes are few and far between. I've hung on to very thin eyebrows. The hair on my head is growing slowly. The hair on the rest of my body seems to be growing in faster.
I'm very tired in the evening after working all day. I'm still not sleeping that great (night sweats) so I think the fatigue is a combination of chemo, radiation and the sleep. I hope to get my neurontin prescription this week to see if that helps control the night sweats. I haven't gotten the results of my tamoxifen metabolism test yet and haven't started tamoxifen.
Thursdays are massage day. I am on the schedule to get one after my treatment every Thursday. It's a big help at the end of the week.
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hi ladies, just spent the last 10 minutes catching up on the thread. so good to see some everyone is still posting.
i have been working like crazy. after going through what all us of ladies have been through, or are going through right now, sometimes worrying about my career seems silly. my whole outlook on life has really changed. i just don't see what is the point of working 80 hours of week, but have no way out of it right now since I still have about 1 and 1/2 years until I'm certified for my specialty. i could just quit and work as a primary care physician but aside from the hours, i actually really enjoy what I do.
anyway, i'm still on the herceptin. may is when I'm done. i'm getting close to the 1 year mark from when i was diagnosed. does anyone know when is our anniversary? is it from the day you are diagnosed, or the day you have your surgery or the day you start or finish chemo? i have no idea. and when they say i have to be on aromasin for 5 years, is it 5 years from diagnosis or 5 years from starting the aromasin?
all you ladies still in therapy. stay strong. you can do it. i can't believe it's almost been a year since I found my lump and was told that I had cancer. at the time I was diagnosed, i wasn't so sure I would live to see this day ( i was so hysterical when I found out!).
Leslie
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Carolina-
Will you share about your nipple surgery when you have it? After my mastectomies i've had reconstruction, i'm at the stage where i got my last expansion-i was a C cup- i'm going to rebuild to a B cup, so i have expanders in until after chemo. I am curious how the whole nipple thing works, and i can't find much on it.
I had an ovary taken out a few years ago, it was nothing compared to cancer/ chemo. The worst thing is teh anesthetic. . My surgery was lapriscopic (sp.) so i just have 2 teeny little scars under my hip bones. Know going into it that you are 1000% stronger than the procedure
xo
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Carolina-
Will you share about your nipple surgery when you have it? After my mastectomies i've had reconstruction, i'm at the stage where i got my last expansion-i was a C cup- i'm going to rebuild to a B cup, so i have expanders in until after chemo. I am curious how the whole nipple thing works, and i can't find much on it.
I had an ovary taken out a few years ago, it was nothing compared to cancer/ chemo. The worst thing is teh anesthetic. . My surgery was lapriscopic (sp.) so i just have 2 teeny little scars under my hip bones. Know going into it that you are 1000% stronger than the procedure
xo
krista0 -
Chemo Mom- Thank You!
xo
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Cindy:
I am with you on the hair thing.....fine and soft.....like a baby's. I have long since ditched the wig....figure I'll keep it really short while I'm on femara. Are you on femara...couldn't remember if you were ER+.....
Haven't posted in a while but try to keep up with everyone. Hope Leslie is doing well...haven't heard from her in a while. It won't be long and we'll be done.
Anyone heard anything from their doctors about the new herceptin and tykerb trial treatment for early stages.....just wondering who is recommending it...
Take care everyone. Until next time,
Katymom
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Hi all, It is soooooo good to be done with chemo. I'm doing the Herceptin every three weeks and taking tamoxifen daily. I've noticed I'm having more hot flashes, well extremely warm flashes, than what I had before.
I feel a bit down at times because even though I'm done with chemo I still look like a chemo patient. Is there such a thing as post chemo depression? The American Cancer Society has a program called "Look Better Feel Well" that I'm attending tomorrow. I hope they can show me how to draw on eyebrows and put on false eyelashes correctly. The darn things keep falling down. Guess they were ment to rest on real lashes which I lost on my left eye and most of my right.
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To the ladies who've lost eyelashes, have faith! It's pretty common for all your eyelashes to fall out a month or so after you finish chemo. Mine did, both times! They grow back really quickly. By the time your last lash falls out, I'd say you only have about two weeks with no lashes whatsoever. Then they grow back really thick.
I haven't checked this board for a long time. I had carboplatin/Taxol on a weekly schedule. No herceptin because I'm triple neg. But this board was the closest I could find to my regimen. It's good to see both Leslies appear to be doing well.
I'm doing fine. Still haven't regained all my energy, but I need to get back into an exercise routine. I know that would help tremendously.
My exchange surgery is April 1, where they'll also take out my port. I'm looking forward to being done. I think it will be kind of a relief to have less "hardware" in me. <grin> And my hair *almost* looks "on purpose" now. (Almost, but not quite!) LOL
--CindyMN
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I am still waiting on eyelashes. They fell out about six weeks ago and haven't grown back in on the bottom yet. The top eyelashes are very sparse and haven't grown in either. My blocked tear ducts are slowly correcting themselves so it's possible to wear eyeliner if I want to give the appearance of lashes.
I had my last "normal" radiation treatment today. The first of eight boosts is tomorrow. My skin is pretty raw. I've only been using cornstarch and hydrocortisone cream for itches. Today I was given aquafor
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I am still waiting on eyelashes. They fell out about six weeks ago and haven't grown back in on the bottom yet. The top eyelashes are very sparse and haven't grown in either. My blocked tear ducts are slowly correcting themselves so it's possible to wear eyeliner if I want to give the appearance of lashes.
I had my last "normal" radiation treatment today. The first of eight boosts is tomorrow. My skin is pretty raw. I've only been using cornstarch and hydrocortisone cream for itches. Today I was given acquafor ointment for the irritated parts that aren't in the boost area. I can't wait to be done with rads. I was told not to plan on using deoderant for 7 - 14 days after radiation ends.
8+ weeks post chemo and my hair is about 5/8 of an inch. My hair used to grow an inch in six weeks so this slow progress is frustrating. The hair is coming in black and straight so far. I've been told it's too short to tell whether it will be straight or curly (used to be straight when I had brown hair).
I have my next herceptin only treatment on Monday. Six more months to go....
Terri.
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hi ladies,
i need some advice. I'm getting the every three month injection of zoladex and taking an aromatase inhibitor aromasin daily. i have been doing well and have had my estrogen level checked periodically to make sure that it is very low. since i'm on zoladex, I should not be getting my periods. Haven't had a period since starting the shot and chemo back in May 07. all of the sudden yesterday I got my period. my oncologist told me that perhaps I'm having fluctuations in my hormone levels with the three month shot and I may have to get the shot monthly instead (which is fine since the oncology clinic is literally right next door to where I work all day) because it keeps the level more even. So she sends me for an estrogen level and it comes back still very low. so if the shot is working, why am i getting my period? Is anyone else on this combination having this problem? -katymom are you having this problem at all?
Leslie
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I have a question that I'm hoping someone might know the answer to. I'm also going to have TCH, feel pretty comfortable about that, at least as much as I can given the situation. Does anyone know what the Her2+ ratio means? My pathology report says mine is 12.9, which I take to be as quite high. Any thoughts and feedback greatly appreciated.
Hang in there sisters!
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CindyB: Does your patholgy report mention the kind of analysis that was done for HER2+? There are at least two different tests. I had the FISH analysis done and my report states that a ratio over 2.2 is considered "unfavorable". My ratio was 5.3. You can find more information at her2support.org.
Terri.
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it means that you have extra copies of her 2, which solely means that you are her 2 positive. I also had many copies and did some research about it and it doesn't seem to correspond with any worse outcomes other than being her 2 positive.
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I have just completed my fourth TCH cycle and I can't say it's a cakewalk but I am dealin with it. I just found this thread and read all the posts ... really, really helpful for me. I was wondering if those of you who are several months or more beyond chemo could comment of how hair regrowth is coming. There is another thread that has a post saying that 4 to 5% of taxotere patients never get their hair back! That freaked me out! Is everyone getting what they would consider "normal pattern" regrowth ... meaning at least the hair is coming in all over your head and looks like it will eventually fill in?
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Now that is scary. I have never been told that it causes hair not to come back. I never really lost all my hair though. Its about 3/4 inch long but I have some actual bald spots and it's really thin so I shaved it. I so look forward to it coming back. Already jumped the gun and bought a short hair magazine to pick my gradual growth looks LOL.
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There is hope! My hair is thick, full, and curly. I had thick and full hair before but it would not hold a curl!!! It even seems to be growing at a normal rate now.
I finished 6 tx of taxotere and carboplatin the end of August and continue to get herceptin.
Anticipate good hair regrowth!
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I am 10 weeks out from my last chemo treatment. I figure my hair is now about half an inch long. It used to grow an inch in six weeks so I'm still waiting for the growth to pick up speed. I had some bald patches but they are starting to fill in. I can still see my scalp in places. It's still looking straight and is coming in black. My natural color is brown.
My eyebrows are still thin but I have them at least. The eyelashes haven't grown back in yet. That is starting to concern me.
The blocked tear ducts are about gone. I finished radiation on Monday so now it's a matter of Herceptin every 3 weeks.
Terri.
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Terri ... thanks for your post and encouraging info on the hair regrowth. Sounds like you are on your way to a full head of hair which is great. Strange how the color changes, huh?
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MaryAnn-- I had my last TCH on 12/20 and am continuing Herceptin. My hair has grown back pretty quickly. I probably have pretty close to an inch now. It came in all over-- no bald patches at all. And it's the same color as it always has been. Although the greys sure do show up more when they can't hide among long hair!! And just to warn you-- my eyelashes held on thru all the treatments, but fell out in late February. Weird, but i have since read that it is not uncommon. Hang tough gals.
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chemomom - thanks for posting here. It's great to read an encouraging hair regrowth story. Weird about the eyelashes, huh? Congratulations on being three months out from chemo! I'm sure it's a relief and I can't wait to get there.
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Hi all, I'm so glad to find this web site and forum! I had a hemi mastectomy on March 21 and am ER and HER2 positive. No mets to the lymphs. I have learned so much from you all since reading your comments. I started THC on March 17 (Happy St Patrick's day) and it is now day 8. I have not had a fun week, but no nausea thank goodness. My mouth is very painful. It feels like I've been eating hot peppers for days. My taste buds are off, but some things taste alright. I felt like I had the flu yesterday, better today. Much fatigue. Your comments give me hope that I will feel better soon. Thanks so much!
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Daisy ... I'm glad you found this site! Welcome and congratulations on completing cycle one of your chemo. The first week after treatment is the worst and then you will progressively feel better. We are all learning from each other here.
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Leslie: I just saw your post......I had a similar problem a few weeks ago. I didn't have a full blown period, but I had spotting for several days. The doctor said that sometimes happens and not to worry unless it continues. Also, he is recommending a gynecological exam (which it is time anyway.) Also, I heard that these drugs work sort of like birthcontrol pills in that if you miss a dose it might cause spotting. I hadn't missed a dose, though. Hopefully, you have more news by now.....My spotting stopped and I'm due for the lupron injection April 4......so we'll see..... I am having elevated blood pressure on the femara....anyone else have that problem?
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Katymom- good to hear from you. my bleeding stopped after 3 days. i got a gyne exam and they checked out my uterine lining and it was fine. i had not missed a dose of medication at all. are you on the 3 month shot or monthly shot?
leslie
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Welcome, MaryAnn, Daisy, Kimbly and BJN!
Many of our regulars have been AWOL. I hope that everyone is doing alright. The fact that we check this thread religiously every day during chemo - then we disappear after - is proof that there is life after TCH...a mostly normal life, too!
I remember that through it all, that is all I really wanted. I wanted my hair back, I wanted my health back - I wanted my life back! And the good news is that it does come back. I sure could do without the daily reminders of cancer - my tamoxifen pill and my absurbly short hair - but in time, those will pass as well. I have always said that I make a much better cancer survivor than I do a cancer patient!
The hair is on everyone's mind. Have you all seen these pictures They are one woman's weekly growith for one year after chemo. http://www.karinstack.com/images/hair/HS_grid.jpg
I did not ever lose everything, and as a result, my way of "taking control" was to NOT shave anything. I planned to wear a wig in public anyway. I was rocking the Gollum look for awhile! My last chemo was 10/31. I am approaching 20 weeks post-chemo and I have at least an inch and a half, maybe even two-and-a-half. Some places it is even longer - like in the back of my head. Most of my loss was on the top and sides. I have what I call a chemo-mullet! Very attractive!
Super High Potency Biotin (a Vit B supplement) and Nioxin products have helped my hair growth. Statistics are scary, and as a young breast cancer survivor (I am not gonna say patient!) I have learned to take them with a grain of salt. Before you freak, remember that these statistics have a certain demographic attached to it that may or may not apply to you. Usually, women who experience permanent hair loss have other underlying complications that contribute, like hyprthyroidism.
I did not lose all my eyelashes and only the ends of my eyebrows. I used a product called REVITALASH (it's pricey, so I bought it on ebay) and BILLION DOLLAR BROWS. They both helped when I used them on a regular basis.
Stay positive and I hope that some of this helps!
Nan
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Hi Nan ... thanks so much for posting here! It is great to hear from someone who has been through all this. It helps to put things in perspective. Yes, the "hair thing" is very much on my mind, maybe because it is the most visible sign of my current status. I am SO looking forward to having hair again. My friend was telling me about the Revitalash yesterday. Sounds like it works. Will research the Billion Dollar Brows, too. Thanks for the tips!
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