Taxol and Herceptin only for stage 1 HER 2 positive?
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mary1234 - Gilda Radner was diagnosed with ovarian cancer at 40, and passed away just prior to her 43rd birthday. On the hair thinning on Taxol, most lose enough hair that they need to use a headcover, but many don't go completely bald. A lot of people have it start to grow back while still receiving treatment.
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Michelle, thank you for starting this thread. I wish it was here when I started taxol/ herceptin in early January! My tumor was .6mm & my oncologist was initially on the fence about whether to give me the full blown ACT or skip chemo altogether. I'm 43 so she was leaning towards treatment. I was freaking out about possible side effects such as permanent heart damage & heightened risk of other cancers. Luckily, the findings from the San Antonio symposium were published the day before my initial appointment & my doctor brought the study on low dose taxol to my attention. She lobbied her board & I am the first patient in the province of BC to receive this regimen. I agree that a kinder, gentler approach to smaller, high risk cancers looks like it may be the way of the future. I certainly feel lucky that I had the opportunity to go with a less toxic treatment with less chance of long term side effects while still being proactive.
I finished my 12x taxol in early April & now receive H every 3 weeks for the next 9 months. I chose to wear cold caps and kept most of my hair. The caps were a lot of work but for me, it was a great decision. I did lose hair everywhere else by about week 8. I managed to work & exercise part-time & mostly just felt like I had a giant hangover for 3 months. I think I felt the yuckiest the month after taxol because I expected to feel well the moment it was finished. All my eyelashes fell out 5 wks PFC which didn't help much either. As a plus, they were back within 2 weeks & very thick (I used Latisse throughout). Now that I am 9 wks PFC, I feel almost like my old self. The thrice weekly H is easy- a quick 30 min infusion and besides some tiredness on the day of, no SE's.
I think it's fantastic that more women are being provided with this treatment option. Thanks for sharing all your experiences, it's so helpful to know that none of us are going at this alone. Hugs - Laura
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good morning ladies!
Are any of you taking B6 to potentially offset the chance of neuropathy setting in?
I slept and slept and slept last night, but I still feel tired. Maybe I slept too much
Lynn
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SpecialK - sorry for the mistake. I don't know what made me think she was in her late 20's.
Laura - thank you for sharing. We all learn from each other on this thread. We may not all experience the same exact se's, but when we have a se, we remember that we read of one of our friends on this thread that had the same thing.
Michele - a special thank you too for starting this thread.
Lynn - I had 2 days of energy. Then last night about 7:30 I tired out. I thought, either I did too much or the steroid high was over. This morning, I woke up 6 am. I didn't feel that great. I ended up taking a 1 1/2 hr nap. Feeling better, but the energy level I had the past 2 days is definitely not the same. I take B6.
I made an appointment for a Look Good Feel Better class for this Monday. Monday's are my treatment days, but that's the only day they hold these classes. Hope I feel okay.
Wig appointment is on Tuesday - day after treatment. This should be my good day.
So many things coming up: My granddaughter will be in a talent show tomorrow and her moving up ceremony is this coming week. I just hope I feel good!
Hugs
Mary
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Hi Summer,
I too was soo happy to be offered this treatment!! : ) My last of the 12 taxols was May 27th and about 12 days later, about 1/2 way through the day, I suddenly realized... I feel really really good all of a sudden. Like myself again, without the annoying low grade fatigue and blah feeling I had during chemo. I didn't even think I felt that bad during treatment but I have so much more energy now, I feel great! : ) Your description of a 3 month low grade hangover pretty much hits the nail on the head. Lol. Sucks but not nearly as bad as it could have been. My hair is growing back fast...still wearing a wig because it is so short but it is encouraging to see it coming back. I also the first person my oncologist has used this treatment on. I had my first triple dose of herceptin a week after the taxol was done and felt totally fine after. Hoping it stays that way. I had mapping for radiation today and start that on June 30th. Do you have to do radiation too?
As always... I wish all of you ladies everything good!! : )
Michelle
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mary1234 - that is ok! No need to apologize, I just wanted to put that out there in case it was frightening to anyone reading here that is in their 20's.
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Michelle14: Thanks for sharing about the other side. I am at treatment 8. Ready to be done, extremely tired and just plain uncomfortable. So looking forward to getting through. I start rads (sim) 7/30, 8 days after chemo and then I have the 33 treatments starting a week later. I too, was the first person my MO used this treatment on. He was hesitant to do TCH, so he consulted with a couple others and they recommended this "lighter" version.
Happy weekend all!!
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Michelle14, isn't it amazing when you suddenly realize you feel like your old self? The taxol fog is manageable but so nice when it lifts. I don't have radiation, I chose to have a bi-lateral mastectomy last Nov & be done with it. I'm just waiting for an implant exchange. Hope everyone is having a great weekend!
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Summer and Michelle,
So good to hear that you made it through the twelve weeks! I'm only done with one treatment and it just seems that it will go on forever. Summer, when will they do your exchange? After you're done with all the herceptin? I'm so impatient to get these tissue expanders out!!
Jhodro you'll be on the other side pretty soon, you can make it!!
Mary, I'm going to a look good feel better class on Monday too
wish it was the same one as you. I bought some B6 today. My MO said it isn't proven to help with neuropathy, but it can't hurt.
Thanks again to all of you who share your stories on here. It really helps!
Lynn
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Quiet here. How is everyone?
Two more TH treatments for me. It's almost over with the Taxol. I hear Herceptin isn't so bad.
Dee
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I am in the chair today for #9. 3 rounds done, 1 to go. Fortunately I'll have H only next week (no benadryl, no steroid so sleep is good) and then a break for vacation. Someone commented on the Rads board on how long a process this is and I'm really starting to feel that. I was diagnosed in January and here we are in mid-June and I still have quite a way to go. At least I'm making progress. Progress is good.
Dee: the weeks of H only are not bad at all. It should be a walk in the park after everything else.
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Dee & Jhodro,
How lucky 2 more treatments for Dee and #9 for jhodro! I wish I was that far ahead! Yesterday was #2 TH. I left a little bit more groggy than last week. The nurse said they may lower the steroid and benedryl next week. They were a little behind yesterday again. My appointment for treatment was 3pm and they took me in about 4:30. I picked up a hat with bangs at the hospital boutique. The bangs are going back. They look hideous compared to the nice wig. I hope they take returns. Went to bed early and woke up 5:30 this morning
.Lynn - Let me know how you are doing. I missed the 6:30 p.m. class for Look Good Feel Better last night. We got home near 8 p.m. You will have to tell me how it went.
The RO said that i won't need 25 radiation treatments - only 16. It will start 1 month after the Taxol is completed. So probably in October. They said I will be getting radiation lying on my stomach with the breast going through an opening. My last TH treatment should be Aug. 25th. Dee, will you be getting more than 16?
Can you believe, I met 3 women in the waiting room Her2+!
Today is great. I got my wig and it looks pretty good. Making some chicken soup today. Good thing for air conditioning - it's going to be 90 degrees today. Summer is coming quickly.
I'm happy to hear everyone is doing great!
Have a wonderful day!
Mary
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Mary and all,
I don't know how much radiation I will need. I assumed it was a standard dose. Would be great if I only needed 16, too.
Glad you like your wig. I like mine, too. It does get itchy when it is hot out. Mostly wear a bandana or cap around the house.
I noticed today I don't have any hair on my arms or legs. Down below almost gone as well. Still have some on my head. Oh well, I am used to it now.
Amazing what we can do when we have to.
Dee
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Mary, Congrats on the wig! It's nice to be able to go out and feel somewhat 'normal.' I don't wear it at home for the same reason - too hot. I just use hats mostly - -and someone on these boards introduced me to "buffs" and they are awesome too - super thin and cool. Easy to wear and versatile/UV protectant. They are sold at sporting goods stores and online.
Mary & Dee, I too am 90% hair free. I definitely feel like with all the hair gone, getting ready/showering is much quicker than it used to be. I'll take that as a small win, at least. 16 rads is awesome. Check out the summer rads board - there are some people on there reporting symptoms about that far in they are just starting to get some irritation of the skin, so with 16 you might escape SE free - - I hope so!!! I have 33, but am also hoping to SE free.
I found out I needed 33 during my consult with the RO, just before I got word I had to go do chemo first. Just scheduled my first sim - on July 30, 8 days after chemo. Want to get this all done.Going to go try to enjoy my steroid high for the next few hours, before it wears off tomorrow.
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So great that you're almost done Dee!
Jhodro, are there weeks you only get herceptin?
I had my second infusion yesterday and my face has felt flushed all day today. I read on the se page they gave me at the hospital that this was a common se, but I'm not digging it. Hoping it goes away by tomorrow.
Mary, I felt much much more tired after this treatment than my last one too! The look good feel better class was really fun. You should totally reschedule! I really enjoyed learning about the different ways to fold scarves. Now I just have to go buy some
I'm going to look at hair free as a silver lining and think of the money it will save on razors and shaving cream.
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When I originally scheduled my chemo they told me I could work around a vacation we had planned for the end of August. My 11th chemo would have been on the Monday of the week we are gone. This was left off of the schedule I received from my MO's research assistant. I emailed her to ask about it and she told me that the MO thought it was fine to just skip that week and just do eleven. She said if I want to do it we can add it in the end. Soooo, on the one hand, "yeay!! Done sooner!!" On the other hand "12 for a reason?"
What to do.....
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Lynn
I heard at the Gilda's Club that if you go on vacation, you can be set up at a hospital for your infusion so you don't have to skip. You may want to check that out with your MO. I'm not sure how it works, but it's worth asking. Not like your going to feel like doing this on your vacation, but at least you won't skip your treatment. I think there is a Gilda's Club in MA. You may want to call them and ask how it works.
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Some info - for those receiving shorter courses of radiation (Canadian protocol) versus traditional - the amount of radiation is basically the same, just fewer treatments.
Also - the flushed face following chemo is often caused by the pre-med steroids, dexamethasone/decadron, the flush usually lasts no longer than 24 hours.
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Yes, my RO said there was a study done on about 7,000 women from US, Canada, France, Germany etc. The radiation amount is the same and they found that women in my age category (60's +) the benefit was the same with 16 treatments. So being over 60 sometimes does have a benefit! LOL. Although we'll probably have a little soreness sooner.
It's going to be a hot one today in NJ - 93!
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going for #7 today! Felt good for most part! Day 3 after chemo notice fatigue and soreness of upper back neck shoulder skin. It goes away by end if day 4. Hair thinning a lot but still covers my head with a short buzz cut! Not sure if I will have to shave it! It's amazing how many people comment on the short hair how much they like it! I believe I will keep it short from now on!
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I love my short hair! No more blow drying......and I'm not losing it yet. Only finished treatment #2. This will be my new cut from now on as well.
Mary
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LynnDeidre: Yes, I get Herceptin only after 3 weeks of taxol. I'm scheduled for four rounds. I just finished round 3. Next week I have H only, then I have vacation and come back for my final round. So looking forward to the two week break from Taxol. The fatigue this round was much worse than the previous rounds. I also get the flush face and chest the day after, I was told from the decahedron, but it's also there when I do H only. I lasts only about the morning after the infusion. Usually by afternoon, it's all gone. On my H only week, I've felt pretty good, just some tiredness, which I believe is left over from the Taxol. I'm hoping to be pretty much SE free once I do H only every three weeks.
Mary: I looked into Gilda's here in metro Detroit, and it's no longer supported by Gilda's family. It has the same name, but I guess there was some controversy a few years back, so it has different sponsors. I wonder if it's still a good place to go? I tried to go to a support group at the Cancer center where I get treatment and they only offer it once a month and the last two have been canceled. I was really hoping to meet a few others with my situation. Have you heard of this with other Gilda Clubs around the country?
I went back to work today and had to leave around 2pm to come home and nap. Slept for an hour, did my kid running around and was out by 8p. Now I'm wide awake again. My sleep schedule is so messed up!!
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Hi, Michelle -
I haven't been following this thread since May, but was happy to read that yiu are done with the Taxol. The remaining Herceptin infusions are much, much easier on the body!!
)Saw my oncologist in May - he was one of the original sponsors of the "lighter regimen" protocol of just taxol & heceptin. All of us at Mass General (his patients) are cancer-free 5+ years out...my anniversary is next month.
Like you, my hair started coming back before I finished treatment...I kept it short and blonde, & love it!!
Best Wishes & Blessings to all!
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In the chair today for #11 of TH. Then 1 more to go. Taxol is taking it's toll on me. Not much hair left anywhere. Still have some eyebrows and lashes and enough on my head for fringe under hats. Fatigue is the worst SE for me. I don't feel like myself and haven't been able to do much exercising. More D lately, too.
Looking forward to be done with Taxol and on to Herceptin only. Glad to hear it is much easier, not too many SEs. About 4 weeks until start rads. I can see the end of the tunnel.
Take care all
Dee
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jhodro, You should register at Gilda's Club in Detroit. It is supported by outside donors. Members are not expected to donate. A few years back, they were talking about closing ours because the funds were not coming in. I guess they found a way to keep the programs going. They run fundraisers etc. I went to a few support groups. They only have the breast cancer support group once a month. A social worker usually attends the support groups. The best thing is their programs and lectures e.g. yoga, meditation, exercise etc.. - all free for members. You can utilize their programs only. Once you register, you can call their number and let them know you will be coming to a support group or program. Sometimes they cancel if they don't have a participant. Although I have been to a few support groups, I haven't tried their programs yet. I heard a lot of good things about it. Tonight, there is a program called "Exploring The 7 Chakra's" - Yoga. I'd like to go, but I'd like to drag my husband with me! LOL I think you can take a guest. They're pretty accommodating.
Enjoy!
Mary
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Lynn, I had a vacation booked that happened to land in week #12 of taxol, too. I feel for you- I went back & forth thinking, "yay, one less treatment" and "oh no, should I really miss that treatment?!" It's a hard choice.If it helps at all, I came to the conclusion that I was 'taxol'ed' up to the eyeballs & one less treatment was unlikely to make a huge difference. Ultimately, I ended up staying home because I just didn't feel well enough. I think it depends on what you're doing..we had a week booked in Mexico without kids. I knew I couldn't properly enjoy it but I may have been able to handle something more mellow, closer to home & with the kids. What do you have planned? Sometimes the goal of a vacation is enough motivation to push through those weeks. I did go on a 2 day girls' shopping trip during wk #8 & although I didn't feel fantastic, I was so happy for the break in routine. You'll know how you feel as you get closer to the date.
BTW- my PS & onc have ok'ed implant exchange during H...I'm just waiting for a date! Have a great day! Laura
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I just noticed that I broke out with tiny pimples on my chin and around my mouth. Has this happened to anyone else?
Mary
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I have had two Taxol breaks. One when I got pneumonia and again when the SEs were very bad. I didn't miss the doses as they added them on the end so I had my total of 12.
Mary, I have not had any pimple break outs so far.
We had a ten day trip to Disney planned for February way before I knew about the BC. The Docs said we could go ahead and I am so glad we had that time before all this BC stuff started. I came home on the 13th and had my lumpectomy on the 14th, Valentine's Day! Hope to get away for a few days after Taxol is done.
Take care all,
Dee
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Mary: I will register at Gilda's. Definitely could be interesting and it's not too far!
I get nasty acne every week, like clockwork. Not just my face, all over my head. My infusions are Tuesday, I have acne Thu-Sat/Sun, depending. First MO told me to put cortisone on it, it was from the steroid. Then they said maybe it's the Herceptin. My Herceptin only weeks it was much much less, so it's not the H. Then they gave me Doxycyclene, which I took for 3 weeks and battled a level up of D. I didn't take it this week, and I still have the acne, but the D is much much more manageable. I've also learned a lot about the Chakra's by doing Reiki - - I really feel relaxed after those sessions, no idea what it does or how it works, but it does seem to offer some serious relaxation benefits.
Dee: we had booked a cruise before I started the BC path, so I'll have a 2-week break from Taxol, one is for the H only week I get every 4th week (3 on, 1 off), and then one for vacation. Then when I come back, I'll have three more taxol treatments and be D.O.N.E. I'm hoping since I'm gone during a second break week, I'll feel decent and be able to eat, sleep, enjoy etc. But even if I can't, at least we'll be relaxing on a big boat in the middle of the ocean someplace. Pray for no illness on that ship!!
And what a valentine's day for you Dee!! I had a surgery (my re-excision) on St. Patty's day and started chemo on my anniversary -- will be memorable, that's for sure. What a year. And you're so close to being done!!0 -
Missed the Chakra yoga class last night. Just didn't have the energy for it. I guess Thursday isn't going to be my best day since treatments are on Mondays. So now when I look at the calendar, Thursdays are out. There is a Seimei class Tuesday night. It's some kind of non-touch Japanese healing. I'd like to make that one. Tuesdays and Wednesdays seems to be a good day for me.
The nurse who administers the treatment said Monday that maybe this week she will lessen the benedryl and steroid. Umm - we'll see how that goes.
Yesterday, I put a call into the breast surgeon's office. The RO noticed pinkish on the lower part of my breast (the one that had bc). She didn't think I needed an antibiotic, but said to keep an eye on it. I never even noticed it. I called the breast surgeon's office. Thought she should be informed of this. I also noticed that around the nipple (every once in a while), it crinkles up and turns lighter. Then it is normal again. I haven't heard from the office yet, but I'll let them know that too.
Dee - you sound like you are done with Taxol! How wonderful. Boy, how I wish I was at the finish line. Not that its affected me too much, but I still have a way to go. Not looking forward to the effects that this taxol may have on me - hopefully minimal!
Lynn - How are you doing?
Have a great day everyone!
Mary
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