Cold Caps Users Past and Present, to Save Hair
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Drim, GolferGirl, thank you so much!!! Im thrilled for you with the hair!!!
i did e-mail and have yet to hear back, im sure i will soon!! I think Im really going to need your help to get me through...I do look forward to my new friends ..My sis has been so great!!! unfortunately its just her and i left, we lost our family two years ago.Ordinarymammal, I plan on going in in fully armed as well, great idea about the print outs! ill do that also, sounds like we will be stating our case on the same day, i wish us both goodluck!!!
I see ONC on Thursday and she will let me know my plan. I have not a clue what ill be on?,how long? or what she will say, Of coarse im preparing myself for the worst and a life time of chemo,no hair and throwing up, lol though im staying very positive!! Today was a good day! I got my results from my MRI and all was clear,as well as bone scans,chest xrays, and blood tests! Mastectomy staples and drains all out!! I feel i have been in crises mode for the last 28 days!! Wow!! 28 days, how did we all get through that first month?!? today Im thinking the worst is over,no more waiting!! now its a different road ill be taking. Im feeling good as good can be. all things considered, My surgeon did say if i do the treatment plan within 10 years my chance is 7% of it coming back.. if i do not do it,within 10 years it will be 17% of it coming back..She said im young, healthy and can do it! I still cannot believe this has happened...How do you decide what to do???....... im thinking tonight will be my first night in that 28 days of not crying myself to sleep.knowing i have you women to fall on when needed means the world to me!! thank you for that!!
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Cheyenna - I'm so sorry for your loss. I'm sure your sister will be there for you. I know my sister has been great. You can certainly count on me if you have any questions. Frank is a busy guy but I'm sure he'll get back to you soon.
I think its definitely time for you to take a deep breath and know that you will be okay. It sounds like you are doing well and based on my experience I bet chemo will not be bad for you - especially with the cold caps. My onc told me the same exact thing about me being young and healthy (I'm just about to turn 44). In terms of deciding what to do, I met with 2 oncologists and I did a lot of research but ultimately you have to feel comfortable with the final decision. Once you have the plan in place you will feel so much better.
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Hi Cheyenna - I also met with two oncologists before deciding what to do. Lucky for me, they came back with the same recommendation in terms of chemo. I'm also just about to turn 44 (at the end of July) and otherwise healthy, and like Drim, chemo (so far) has been much easier than I expected. I was really tired for a day or two, but never felt sick or even really queasy. I think they've really come a long way in being able to treat the SE's. My first onc has the caps to use in his office; the second did not. When I saw the second onc, he assumed I was ready to go with him and had booked everything for me already. I left there thinking, "Well, it's already scheduled, guess I'm stuck and I'll just have to lose my hair" I cried for 2 days then went to see a doctor for BRCA testing. I cried during the appointment and she assumed I was worried about the testing but then I told her no, I'm crying about my hair! She felt so bad, she called my first onc (at the same hospital she's at), then he called me and said "Cancel the other guy, you need to feel good about doing chemo. Come back here and do the caps, you are saving your life and this should be as positive of an experience as you can make it" So I cancelled onc # 2 and went back to onc #1 with the caps. I guess the moral is, find the onc and the plan you are comfortable with! Onc #1 also told me less than 2% of people who already have mets get scalp mets and less than 1% of people have scalp mets as their first metastases. As he put it, you are more likely to be hit by a car coming for treatment! Those odds were good enough for me and I decided to go for the caps and I am sooo glad I did!
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Drim, Golfergirl..Thank you.. And yes i will have lots of questions..lol... I think i will meet with a couple of Onc's I just didnt know if there is time? i have a lot to learn.. today i will make some calls and see what i can find out.. i dont want to be uncomfortable with treatment in an office where they dont use the caps, ill ask that question tomorrow! (How accomadating is the staff to woman who want to where the caps) I have a list of pro's and con's about all kinda of things
I want to ask about the oncotype DX test as well, did you? did it help in your decision? i feel im right on the border and its all up to me!! and the port??? that seems scary to me?
well to be on the safe side i went wig shopping with my girlfriend..lol crazy but not to bad
..i found a couple.(just in case) but really i dont know what they will put me on till tomorrow. it just seems most of the ladies are on the drugs that take the hair!! so i guess it will be me as well??? 0 -
Cheyenna - you should definitely ask about the Oncotype Dx test. I had a weird situation where at first I was HER2+ then HER2- and then ultimately they decided some part of my tumor was HER2+ so they would treat me as such. The point is that while I was HER2- I was eligible for the Oncotype test so I did it and it came back 19 (low intermediate). Based on that score and the fact that I am "young and healthy" I was going to go through with the chemo. Once they decided I was HER2+ I really had no choice but the test did help determine my treatment (TCx 4 + H instead of TCHx 6).
You are eligible for the test based on the fact that you are ER+, HER2- and node negative. The test does take a couple of weeks but I think its good information to have. Based on the fact that your diagnosis wasn't until the end of April your surgery was not that long ago so you still have time to make decisions.
As far as the port goes it was something I really did not want. That was one of the reasons I chose the oncologist I chose. She was fine with me not doing the port and thought I would be fine. The other onc was like - you'll never make it a year without the port (I have to do herceptin for a year and that's once every 3 weeks too). She was also very positive about the caps which was reason #2 I chose her. The other onc was fine with the caps too but my onc supported it.
You are right - just about all of the breast cancer chemo regimens involve hair loss however the caps seem to work for all of them too.
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I ended up getting a port after talking to a friend who had trouble with her veins. I figure I only have one arm for future blood draws from now on, so better take care of it. Plus, I really hate getting stuck by needles and I hate IVs, so the port has worked out well for me. I had it put in just with a local, like they do at the dentist, so I wasn't out. I'm squeamish but managed to watch what they were doing on the xray machine. It really wasn't bad if you have to get one. I walked out and went to lunch with my boyfriend right after, it was really fine. I also had the Oncotype test done (score was 20). Both my oncs felt very strongly that I do chemo because of my age, the Onco score and I had an isolated tumor cell in one of my lymph nodes. Its still considered node-negative, but better safe than sorry, esp since I did not get a low Onco score. All of that convinced me, too. I always hear your best chance of beating this is your first chance, so I figure lets go for it now, I don't want to be doing this again (or worse) later!
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I highly recommend the Oncotype test. I too came in with a low score: 20. At first, I was high-fiving with my doctor, assuming I would not need to go through chemo. In a way, it was horrible to have a *choice* in the matter -- who would ever choose chemo?!? Of course, THE negative was hair loss. Medically, everything else said "yes, of course, go with the better numbers!" I finally realized I could not make such an important decision for myself based on cosmetics instead of medicine. I did not want to be hiking or swimming in 10 years and have shortness of breath and discover nodules on my lungs, so I decided to go for chemo to reduce the chances of that happening in my future. Having chemo now -- when it is prophylactic, a short course, a "lite" dose, and when I have the time and support and work situation where I can afford to go through it, were all factors -- who knows what my situation would be in ten years if learning I had a Stage IV inoperable cancer?
Two other BIG factors in my decision to go with chemo were that I had a very high Ki-67 rate (cell mutation), and I have a horrible Vitamin D level (7 instead of 30-100) which is coming to be considered a marker of prognosis and recurrence.
I'd already made the decision to go ahead with chemo before I discovered PCC on my own. My oncologist did not have/use the caps but supported my decision to use them, and the staff have been accommodating to me, which I appreciate. And it's been fun to watch people change from skeptical to impressed to cheerleading! It's like our whole team is learning this together (good medical practitioners will be open to new ideas, imo).
Your chemo plan will give you much more information. In making my decisions, I decided to just take a deep breath each step of the way and make one decision at a time. The hardest part was waiting for chemo to begin, in retrospect. My cancer center had a very good orientation and education process (the book "The Chemotherapy Survival Guide" by Judith McKay and Tamera Schacher comes from nurses at my hospital). Now that I'm moving through the process and understand how nutrition, hydration, exercise, sleep help me manage my response, and since I've had very little in the way of SE's -- and since I've kept my hair so far, especially! -- I've been able to maintain a positive attitude. My motto is "My hair will grow back, my cancer won't." I also haven't hesitated to use all of the complimentary therapies offered to me at my cancer center: massage, yoga, Qi Jong, acupuncture, social worker, nutritionist. The other thing that's helped me keep focused and positive is this awesome list! It is so wonderful to be able to ask questions, learn, and get support from others going through this!
Btw, my tax advisor emailed me today, and last weekend she was at a party where she met the person who is doing the work for Penguin Cold Caps to gain FDA approval! I hope it gains approval quickly so that word (and acceptance) will get out in the medical community. What a small world!
Best,
Susan
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sebm9 - that was so well said. It is kind of sad that had it not been for the 'hair thing' I would not have given chemo a second thought and just went right ahead with it. But for the reasons you mentioned above (didn't even think about what my work/insurance situation could be in the future) I finally decided I had to do it so I wouldn't spend my life looking behind my shoulder.
At that point I had heard about the PCCs but wan't really sure if it would work and it seemed like it was a lot of trouble. Then I found this thread and everything changed. I couldn't stop crying knowing that I HAD to do this. Now I'm on Day 17 and so far so good. Luckly no real side effects from the TC either.
Great news about FDA approval. I keep thinking that all Frank needs is to get a celebrity to do the cold caps and the word would be out. If that becomes the case he's gonna have to start producing a whole lotta caps.
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sebm9,Drim,
sebm9, i agree that was so well said,I keep going back and forth what im gonna do, (i see onc today for first time) yes ill do it i, no i wont, yes i will do it, no i wont! But reading that has really made me think about taking that breath and having trouble in 10 years.. im mean really? i can give up 8 months of my life to chemo and not feel im looking over my shoulder!! will it be 8 months? i dont even know how long we are on this stuff? maybe its a year or two??? hmmmm so much i dont know.ok im starting to freak out again!!! i hate this!!! have any of you been worried about any long term effects in later life of chemo? was that a factor? may i ask?
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cheyenna - I try not to think about the possible long term side effects. I guess I'm clinging on to things such as - you are young and healthy and can tolerate this well and this is a lighter regimen. I don't know what your doctor will recommend for you but the fact that you are node negative and HER2- bode well. If you are on chemo you will most likely not be on chemo for 8 months. It will probably be more like 3 or 4 months. Definitely don't freak out. You will be able to do whatever it is you have to do. I'm anxious to hear what the doctor(s) say.0
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Cheyenna,
For long-term side effects, I had lots of questions, one of the biggest being potential neuropathy in fingers and toes. Then I learned about ice "manicures/pedicures" during infusion and have done that, and had no issues the first round, had a kind of burning feeling the night of Chemo #2 but it went away (I think I actually was on the verge of frostbite that time). L-glutamine and acupuncture are highly effective in reducing/eliminating neuropathy and my cancer team advised starting as soon as I decided to start chemo (I love acupuncture, btw, and will continue even after I'm done with chemo etc.). I worried about long-term "chemo fog brain" but haven't had a single instance of that short term, so won't have it long-term. I had a partial hysterectomy 2 years ago, so had no concerns about reproductive issues. (I don't know your age, but if you are a young adult you might want to visit Planetcancer.org; my friend Heidi created this nonprofit and it just became part of the Lance Armstrong Foundation. Heidi is a young cancer survivor who realized that the social issues for this age group are very different than in pediatrics or for older cancer patients. It's a great group.)
Honestly, I spend more time coming to terms with the fact that even with chemo, radiation, hormone therapies, there will always be that nagging 6% (in my case) potential recurrence. But my journey is one of living, not not-dying, if you know what I mean. Ever since I decided on chemo, every day has become a gift. And every day I wake up and don't have SEs, is an even greater gift. And every morning I wake up with a full head of hair, is one of the biggest gifts of all! I don't know what my future holds, but I hope to use all the new things I'm learning to give myself the best and longest life possible, live it well, and give back the good energy I feel each day.
My nurse said during orientation, "Do you know how much nausea you are going to experience? Zero. We have medicines and you will take them and you will not have nausea." She was right. I'm the kind of person who is hesitant to take stuff when I don't feel well, but dangee, with chemo that idea has been thrown out the window! I decided I'd take *everything* to help relieve symptoms. I have a big plastic box in my bathroom with stuff for constipation, diarrhea, four kinds of anti-nausea meds, pedialite, tylenol, etc. Six weeks so far and my tally is: 1 tylenol, 3 compazine, and a lotta hayfever meds because that's been my biggest malady this whole time :-) I feel like I want to return all the unopened stuff to the drugstore!
Someday, I hope during orientations the nurses will say "Do you know how much hair you're going to lose? Zero. We have Penguin Cold Caps to alleviate that."
My regimen is I have one infusion every three weeks, four times. I started at the end of April and just realized last night that a month from now I will have been done with chemo for several days! So less than three months from first infusion to last, and I fully expect and hope that this will be the only dance I ever do with chemo. And I'm 3 months post-surgery, so 3 months cancer free, that's the best part.
I'm not your doctor but looking at your diagnosis, you are early stage (great), clear nodes (great), hormone positive (great) and HER2- (great). You are in a great situation! You caught your cancer early, it hasn't spread through lymph system, you'll respond to hormone therapy. And you're young and have a strong will to live and when you've got hard information in front of you, your path will be clear and you'll be able to grab it by the horns, not let it drive you. And you're a mile ahead of the game because you are finding out all you can, and you've found out about PCC and we are all here to tell as proof that THEY WORK. I echo what Drim says, let us know how the visit goes!
And the other thing is, GET A SECOND OPINION, outside your immediate care team if you can . Get a third and fourth if you need. (My mom is a sarcoma survivor and got 9 opinions before finally landing on the correct guidance; that was nearly 30 years ago.) Make sure your oncologist answers all of your questions, even if you ask the same question twelve times. If you can, take someone with you to your appointment to be another set of "ears" and take notes, or else record your conversations with your doctor so you can listen over and over.
Sorry this is so long. I got carried away. Good luck!
Susan
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cheyenna Thinking of you. Hugs to you.
I saw my onc today and scheduled the first session of 4xTC for June 10, the day after my older son graduates high school. He prescribes the steroids (to avoid fluid retention) for two days before the infusion (I was expecting only one), so I'm guessing I'll be bouncing off the walls during the speechifying!
I printed out 24 pages of studies (Annals of Oncology has a good one) and cold cap info, and rolled it up ready to whack him on the head with it, but he surprised me and said, "We used to do this years ago, and it can work, but..." Oh really? Everyone else I've talked to in my community says it doesn't work. The onc says his concern is the possibility of scalp mets.
The Annals of Oncology has an letter from Christodoulou discussing the incidence of scalp mets in his 227 breast cancer patients that used MSC scalp cooling therapy from 1998-2005. 2 had scalp mets. So his incidence is .88%. His interesting note is that one who already had scalp mets used the cold cap during weekly taxotere treatment. She kept her hair AND the scalp mets responded to therapy.
His question to me is am I willing to risk that low percentage of scalp mets (not really a valid number since it didn't come from a controlled randomized trial). I'm pretty sure I am. I feel like I could handle the temporary hair loss, but permanent hair loss really really bugs me. (I have to chuckle that I was willing to sacrifice both breasts, but not my hair, since my hair is no great prize--before BC it was thinning alarmingly anyway.) Like Susan says, there's more to this than not-dying. It's so hard to know where to draw the line with what I are willing to suffer, though. Like Susan says...living, not not-dying.
The chemo nurse said it would be no problem to find a place for me and my helper and my ice chest, and she would be happy to work with me so that I could get my timing right. They offer the peas for nails thing anyway, which might be why she's open to this.
So I have two weeks to get it all arranged. I am still dreading chemo, but am really glad that I'm taking some action to improve how I'll feel.
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OK, well my D- day has come and gone.
.l have seen my ONC today, i really did like her!! though not what she had to say...A/C every 2weeks for 2 months then 3 weeks off (whew hoo!!) then Taxol every weeks for 3 months.im young she said, so if it dont throw into menopause, ill be on Tamoxifen for years. she said we have other options if i dont go into menopause. Hysterectomy i assume..She talked about the same facts as Ordinarymammals did as far as the caps go, she will do what ever id like, but she said she is there" to get rid of on my cancer, hopefully for good!" she is not worried about my hair.. she asked if i really wanted to take that extra chance of something that could happen on my scalp? i didnt know u could get cancer on ur scalp? im so confused now? She told me that if there was a cell floating and it became cancer, it would be fourth stage!! I did not know that either. she wants me to start the week of june 7th..of coarse im doing the chemo.
now im worried? could it really happen on my scalp? i mean, does it not just freeze like a thin layer of your scalp.. i want to save my hair!!!! now im worried, what do you think??
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Hi Cheyenna - What did the onc say about Oncotype Dx? I hope they were able to send for it? I don't know everything about your situation but I'm a little surprised (although I'm certainly not a doctor) that she's recommending that treatment for node negative. I would HIGHLY recommend you got seek a 2nd opinion immediately.
As for the scalp mets, based on everything I've heard so far and based on the fact that you are node negative I am with GolferGirl's onc on this - "you are more likely to get hit by a car coming for treatment". One onc I met with told me he thought the risk was very very low being I was node negative and this is the onc that wanted to treat me even more aggressively than the onc I ended up going with. I appreciate the fact that your onc is there to treat the cancer but you also need to think about your overall well being. Also - don't get carried away with hysterctomies at this point. I wouldn't assume that this is what she is implying.
Please keep us posted. Sending you hugs!!
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I am im such a mess again. i have stepped back 28 days.... i dont know what to do, last night i could not sleep. she didnt want me to wait. she wants me to start next week!! i have no time to prepare... im trying to find a second opinion now...im froze again with fear.i was feeling i was doing really good,, not now..
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Hi Drim, I'm also in NYC. I met with my Onc yesterday and am scheduled to begin chemo on June 11. NO ONE has ever mentioned cold caps. I was planning on going scarf shopping. Now I feel I have to face more decisions! I asked my Onc if hair loss was ever permanent and she said that she had not seen one case in 10 years. I am at St. Lukes Roosevelt. Are you being treated somewhere where they use these cold caps?
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Hi DesignerMom - welcome to the club that I'm sorry you had to join. I live around the corner from St. Lukes Roosevelt (and may have my rads done there) but I'm being treated at Weill Cornell on 61st and 1st. I think it's fabulous there. They don't have cold caps there but are strongly supporting me using them. Its a big production and they are very accomodating.
I will PM you with my number. Feel free to call me.
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Hi Cheyenna, I think we are sort of in the same decision-making mode. Are you struggling with deciding on chemo or not? Is the Oncotype score part of your decision? I met with my Onc yesterday and she clarified something that I had NO idea of. As my Onco score was16, in the low range, my surgeon and others told me that the Onco test indicated my cancer would not benefit from chemo. I interpreted this to mean I could either do chemo or not. What she clarified is that the Oncotype study used AC chemo and that did not make any difference in the low score participants. Had they also used the T chemo, it MIGHT have shown benefit. I was SO mad that this was not disclosed by Oncotype! The study does not show that ANY chemo might not help, only that AC chemo did not help. My situation might be a bit different as I had one positive node. I followed some very good advice I read somewhere here. I projected myself out a year from now and asked "Am I going to be happy I DID chemo or DID NOT do chemo". I am scheduled to begin chemo June 11. Now MORE decisions about this cold cap business! I send you prayers and wishes for clarity and peace in your decision.
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Dear Cheyenna,
I chose to do the Cold Caps because I could not stand the thought of "looking sick" throughout treatment. I actually participated in alot of my children's activities during chemo as I looked good and was able to use "mind over matter" and convince myself that I did not feel sick. This is just my experience and it might sound strange, but in my situation the Cold Caps made the chemo doable.
Know that we are all thinking of you...
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Hi Cheyenna- I really hope you go for a second opinion. You might want to ask your anc if you have time to get one. I would be surprised if you don't since you are Early Stage and node negative. Both oncs I saw told me I had time to make my decisions and get the Oncotype test. I was the one woried about the timing and they both said better to have the right info and feel good about the decision. Not that I should take forever, but that I should feel I could get more than 1 opinion and all the tests I needed to help make the decision. As for the cold caps, my 2nd opinion onc said pretty much what your onc said. But after crying for 2 days about it, and then listening to my first onc tell me that the odds of s scalp met were extremely low, I decided I could live with those odds. I don't feel sick and I don't want to look sick. I was always fine with doing the chemo, the hair was the only real issue I had with it. I was relieved to have the caps and a way to keep my hair. That said, you really have to decide for yourself if you can live with that slight risk or not. But I believed my onc when he said he would not do anything he felt put his pateients at risk, and he was the one who suggested the caps! So many of these treatments haave so many risks and long terms side effects involved. Mychemo increases my risk uterine cancer! It seems there is no way to have perfect treatment with no risks involved. I decided this risk was one I could live with. But, I definitely encourageyou to second opinion and to pick up some books on breast cancer to read about your type of cancer and chemo and what to expect. You can get a lot of info from the books and its easier to take it in since you can read it as often as you like instead of feeling rushed and overwhelmed with the onc. I found some really good books at by searching on Breast Cancer on Amazon. I sorted by rating, then went to my library and checked out the good ones. It really helped a lot. I hope youcan get the info you need to make a decision that you feel god about. I feel really good about my treatment plan, like I picked the best of the worst as none of these plans are easy, but I think feeling good about the choices I've made for me helps me to get through all this.
FYI to Drim and sebm and all- I went into treatment #2 today with a full head of hair. I think I've had a little more shedding than usual, but not much and certainly not noticeable. Yeah!
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Cheyenna, I hope you will go for a second opinion on the recommended chemo cocktail. It is possible to overtreat an early stage breast cancer, and you don't want to go through a regimen that is more than you need, and you don't want to use up any options that you might need in future if there were to be recurrence. When I was making my decisions, I kept reminding myself that I didn't want to be so afraid of cancer that I overtreated it, and I didn't want to be so afraid of chemo that I didn't use it when I needed.
YOU HAVE TIME for a second opinion, for tests, and for meeting with more oncologists. A friend of mine at Memorial Sloan Kettering Cancer Center has written a book, and has a great line I've repeated many times: "Cancer is an emergency of the mind." Cancer is slow-growing, and you always have time -- MUST make sure you have time -- to make the right decisions. Don't be rushed! Ask your surgeon or another person/physician you trust who they recommend as a second opinion. And let your onc know you are getting one; a good physician always welcomes their patient getting a second opinion: it means they are a person of science. If the second opinion is similar, your doc is validated. If it's different, they learn something (they should always want to be learning).
FWIW, my surgery was in February, and it was several weeks before I met with my oncologist. She said she likes to begin chemo treatments within 3 months of final surgery, and I used 2 months of that time to get oncotype, make decisions, etc. We picked a start date that worked for my life and job, and allowed me to get the cold caps in order too. (Your diagnosis was about a month ago, you've got a good window to research and make decisions.) I ended up going with her opinion but I knew my post-surgical therapies were adjuvant. She didn't bat an eye regarding possible scalp mets; mets are likely to be in lung, organs, bone.
I had a partial hysterectomy 2 years ago (due to a hormone-fueled pre-cancerous condition, treated with heavy hormones before surgery, which may have contributed to my breast cancer). But you should plan carefully with your doctor(s) about treatment to preserve your fertility and discuss all of your available chemo options, if that is important to you.
Golfergirl, congratulations!!!! woo hoo!!!! I had a bunch of body-hair shedding right before my second chemo, then it stopped. My eyebrows are thin, but they still look like eyebrows. I thought maybe the body hair loss would pick back up but so far it hasn't. Today is Day 41 of my Swim with Chemo and on Tuesday I expect I'll go for Treatment #3 with hair in tact, again. I wonder if this time my oncologist will finally stop telling me "Your hair is going to fall out this week!"?! :-) The rest of my care team want brochures so they can let patients know.
Have a great weekend everyone! I'll be filling my igloo ice chests with...dry ice, not picnic stuff!
Best,
Susan
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hi girls,Has anyone been on, well im getting second opinions, but the first ONC wants me on A/C every 2 weeks for two months, then 3 weeks off then,Taxol 1 time a week for 12 weeks!! do those PCC work with this kind of chemo?. to me it seems its alot of hard core chemo! im set up next week with another ONC to see what he says. your right i have time! my surgery was may 11.. thank you again, i swear i dont know what id do without you girls!!!!!!!!!!!!!!!
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GolferGirl and Susan - I'm glad to hear you are both doing so well. Susan - that's so great that you are keeping up with the swimming! I used to swim in high school and was a life guard but I hardly swim anymore.
Cheyenna - I cannot speak for others but it seems that people did pretty well with AC chemo and the caps. From what I have heard, Taxol causes hair thinning and not total hair loss and I believe the caps work with taxol as well to prevent the thinning. It seems we are all giving you the same advice so hopefully you are not as worried and scared this weekend although I'm sure you're anxiously awaiting your second opinion.
As for me, I go for TC #2 on Tuesday (Susan - guess that means I'm exactly 1 cycle behind you). All is well with the hair. I'm still thinking normal shedding. I wonder what the chemo nurses will think. I was kinda wondering about the body hair. So far just losing it in one spot.
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Hi all,
Just some more words of encouragement, I am a cold user and I am now on day 60 since my first chemo session and happily report a full head of hair (minus some shedding above the ears where I couldn't get the caps on very tight - but it goes completely unnoticed with my hair down).
Cheyenna, I completely understand your dilemma. I was in the same boat: stage 2, young and doctors were telling me that a harsher treatment was in order (i.e. ACX4, then TaxolX12). But after doing my own research and more discussions with my oncologist I decided to go with TC. One thing that swayed me is that anthracyclines do not seem to be that effective in HER2- patients (like myself) and that most of the benefit for these patients appears to be derived from the taxanes. Now this is a personal decision and one I am happy I took. Please PM me if you'd like some of the articles I found on the subject before your second opinion. And keep in mind, that if you do end up going with AC, there are people on the board that have used cold caps while on this treatment and they managed to keep their hair. So don't despair!
To all those worried about scalp mets, here is a recent article by a team in Canada that looked at the subject. The study found no such evidence to support any greater likelyhood of scalp mets. Here is the reference for it:
Breast Cancer Res Treat. 2009 Dec;118(3):547-52.
Incidence of scalp metastases in breast cancer: a retrospective cohort study in women who were offered scalp cooling.
Lemieux J, Amireault C, Provencher L, Maunsell E.
Abstract
Scalp cooling is an intervention used to decrease the degree of chemotherapy-induced alopecia. The objective is to determine the incidence of scalp metastases among women with early breast cancer who received neoadjuvant or adjuvant chemotherapy. We conducted a retrospective cohort study of women with breast carcinoma diagnosed between June 1, 1998 and June 30, 2002. The median follow-up was 5.8 years (+/-1.7) for the scalp cooling group (n = 553) and 5.4 years (+/-1.7) for the non-scalp cooling group (n = 87). The incidence of scalp metastases was 1.1% (6 cases out of 553 patients) among women who used scalp cooling in the neoadjuvant or adjuvant setting and 1.2% also (1 case out of 87 patients) among women who did not use scalp cooling in the neoadjuvant or adjuvant setting. The incidence of scalp metastases was low and no case presented as an isolated site of relapse.
On a personal note, the cold caps are so worth it! I don't look sick and I think that's half the battle to not feeling sick.
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wow i can not wait for that second opinion, and my ONC score!!! but i feel not so rushed now.. thank you girls so much!!! 0
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Drim,
That's where I had the most shedding also. I decided it was a good excuse to shop at Victoria's Secret for some silkier underwear.
Swimming has been very helpful -- as exercise, meditation, therapy, and in detoxing I think. It probably doesn't hurt that for an hour every day me and my head are immersed in cold water...I began swimming 1.25 miles/day in 1986 and I figure I've gone about 2/5 around the equator. My goal in life is to make one lap around the planet. I'm not letting chemo stop me (it was hard to not swim post-surgery).
Bridetobe, congratulations! You're an inspiration! And thanks for sending that info on scalp mets; I think I'd seen that but hadn't taken notes on it. I'm going to file that away for future reference.
Cheyenna, glad you are set up for a second opinion and an onc score! Stress aside, try to enjoy these days pre-chemo days. It's hard for sure, but when I was making my decision and stressing about SEs etc., a friend said "you get no bonus points for starting to worry ahead of time!" He was right. Make the most of all these days you're feeling 100%. When/if you do start chemo, you'll be nice and strong and in a good head space!
Susan
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Cheyenna: There is now a specific bio marker tumor test that can be done to assess whether it is sensitive anthracyclines like Adriamycin. Tumors that have a high expression of CEP 17 are sensitive to these agents, but a low expression indicates that Adriamycin is unlikely to be effective. Because Adriamycin can be cardio toxic, this test may become standard before giving it.
Because I had residual cancer after 6 rounds of neo adjuvant TC including in my lymph nodes, my onc and one of the 2 second opinion oncs I consulted, recommended additional chemo. The second opinion onc recommended I get Adriamycin. This study was published a couple of days later so I had additional testing done to my tumor, which did not have a high expression of CEP17. Therefore, Adriamycin would have been unlikely to help me.
The other second op onc was Dr. Sara Hurvitz at UCLA. Because the tumor that remained after chemo was 100% estrogen positive, she thought it would be best to get on an aromatase inhibitor ASAP instead of more chemo. My onc also called an onc at USC Norris Cancer Center who agreed with Dr. H, so he changed his mind too. I skipped more chemo and am now getting rad tx to be followed by Femara.
Don't be rushed into treatment if there is any doubt about which agents will work best on your particular cancer. A few days delay is unlikely to make a difference, but using ineffective chemo agents could.
Here's a link to one of the articles that discusses the study: http://www.docguide.com/news/content.nsf/news/852576140048867C852576F5004EA215
Best wishes to you,
Lori
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sebm9 I sent you a private message.0
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Drim & Ang7~ Thank you both for ALL of your help and encouragement! I spoke with Frank and he is arranging an exchange of 14 caps this week. I should be ready to go by my June 11th chemo date. I can't say enough positive things about him...he sent SO much informative reading materials. It was great to be able to sit down and put my "nervous" energy to work for a change. I don't know how he keeps his schedule, but I'm SO thankful he does (he called me late from the UK after he had traveled back from CA. all day) I'm anxious to see how the caps work...I keep reading each of your chemo reports for "hair loss" and so far...nothing to write home about! LOL!
Frank said with my regimen of TCHx6 he has seen a 90% success rate. I'm gonna give it the college try! I'll keep you posted...."spare the hair"...here I come!
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Hi GAgirl - thanks so much for the update. I have been anxiously awaiting to hear what you decided on. I think TCHx6 is a smart choice for you. You will definitely do well with the caps. There is no reason to think you won't. I know Frank can't guarantee success but he must have thought the same thing.
I'm going in for TC # 2 tomorrow with a full head of hair.
I'm sure you will let us know how you're doing. Please make sure you drink lots of water starting at least a couple of days before your treatment so your liver is working at full force and at least a few days after (to get all that stuff out of your system ASAP).
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