Cold Caps Users Past and Present, to Save Hair
Comments
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JC congratulations!!!! Can't wait to see your pic!
Gentle hugs.
I just met up with a colleague who knows that I have been through chemo and surgery and she thought I was wearing a wig! When she came up to hug me on our break at a faculty meeting she said, "oh my gosh is that your own hair? HOW???"
I think we are all so glad to spread the word, I know I am!!
Good luck to all who are going through the chemo and capping now. Keep the faith!0 -
Congratulations jc! I feel so joyful when someone finishes chemo and has kept their hair (and very sad on the few occasions when the cold caps fail, such as TXSockMonkey
) Today I was in the chemo infusion room getting my Herceptin, and for the first time since I started my Herceptin-only every 3 weeks there was a cold capper in the "cold cap room". I stopped in to say hi and give her some encouragement if she needed it - she was doing her last of 6 treatments and it sounds like everything has gone really well. I don't think she's posting here, but another success story!
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jc congratulations! i know it must feel great to finish. looking forward to you pics!
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I hope everything is having a restful, healing weekend.
One "good" thing about cancer (if there can possibly be one) is that I realized I needed much more sleep and I needed to take more time for me, rather than being a workaholic and taking care of everyone else first.
I hope you all can take some "time out" through all of this. Reducing stress helps hair- and everything else!
Hugs0 -
My hair is quite a lot thinner. I can see my scalp through my hair in places, especially around the crown. I met some friends for lunch the other day, who couldn't really tell, but I'm starting to get a little scared. To have come so far and suffered so much. I'm just not sure I have enough hair to make it through the last 3 infusions.
I have worked so hard mentally too. I know that ACT is so hard on hair and I've tried to keep my feet firmly planted on the ground; to be "committed" to keeping my hair but not "attached" to it. Today is just the first time I've had to truly consider that it might not happen.
I haven't had big sheds for a few rounds, just steady. But I know each round is different and I could still make it to the end. I just needed to vent a little. Thank you for listening.
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Prayers Shipsgirl. That's what happened to me. Kept shedding continually but evenly till there was nothing left. I hope you trail blaze and have success.
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Txsockmonkey I am so sorry that the caps didn't work for you. Dang it!!! I sure wish they could work for all. They were a miracle for me but I had the less damaging TCH. I did lose every other hair on my body however during chemo- good controls. Just now starting to get some eyelashes and brows back.
Good luck!!!!
Shipsgirl I am wishing you the best. I got thin spots too, especially around the crown and part, and used Toppik sprinkle - in microfibers. They really covered the pink spots.0 -
Hi Ladies,
My chemo regimine changed 3 times. Was on 3 week doses ofTaxotere + carboplatin + heceptin+nuelasta. could not handle it then doc switched taxol+ carboplatin +herceptin weekly, still could not handle it. Now I'm on something i can tolerate weekly just Taxol & Herception. I've had 5 rounds and haven't lost a single hair on my head! My hair is still super thick. I'm using no shampoo , just a cleansing conditioner called WEN. and my hair feels awesome. I use it twice a week and dry with a warm dryer. People are amazed i haven't started shedding. When is the biggest shed time expected?
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shipsgirl - i too am considering the very real possibility that the caps may not work for me.
My hair is considerably thinner already and I've only had one (bigger than recommended) infusion of T-C. I started shedding early, around day 11-12, and had REALLY big sheds on days 16 and 17. I've been shedding steadily ever since. Monday will be just my second infusion and I've read how bad the shedding is for so many after day 21 between rounds 2 and 3.
You put it perfectly. The goal is to try to remain committed to this fight to keep my hair - while at the same time being realistic about the very real possibility that it will all fall out despite my best efforts with the cold caps. It's nerve-wracking and a little exhausting to be honest.
Thank you for sharing...
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Kaydeesmiles,
My heart breaks for you! It must be one of the scariest feelings! Know much love and encouragement is being sent your way!0 -
Jc - congrats on finishing! Yay! So glad you are done and with hair!
shipsgirl & kaydee - i feel your pain! My hair is MUCH thinner. I can only wear it in a ponytail now because leaving it out, it is see through. In a ponytail, it looks fine, but the ends are very scraggly. But it's definitely better than nothing. There's nothing we can do at this point but hope. I keep trying to remind myself that whatever happens, i have managed to keep my hair until now. I had round 5 on Thurs with one more to go in 3 weeks. Side effects are just starting to kick in but am hoping this round will be more manageable as i had them reduce my dose by 20% based on what i went through the last round - utter hell.
It is definitely hard to consider the possibility that this won't work, or like others, that the shedding will continue so much that the hair will just be gone. But again, there's nothing we can do. At least we tried. I am just hoping that the shedding will not rid me of all of my hair, but certainly if it continues 16 weeks pfc like others, there's no way i'll have much coverage at all. For now, I am done round 5 with hair.
My eyebrows are very sparse, as are my eyelashes. But i walked into the hospital on thurs and my nurse said "you have hair! never in my career have i seen this!" That was sweet. My onc had nothing to say, as usual. Nor did her nurse. But that's ok. For now there is enough hair for a ponytail, and for that I am grateful. I am not scaring my kids; my little one was commenting on how much grey hair i have...lol....i was pleased to hear that comment because that is a reminder that the hair that is left is in fact, growing. I got to go to his senior kindergarten graduation on friday with hair. And that was a blessing.
Anyway, shipsgirl and kaydee - i'm routing for you (and me!) Let's hope this stuff works!
jc - go celebrate!
xo
Curly0 -
Hang in there girls!! I know it is so scary. My hair is thinner, but definitely here! I never did need to wear a head cover. It is really filling in now, new growth about an inch and a half long under the longer hairs that were retained.
For me the shedding stopped soon after my final chemo. I have kept up the gentle treatment and now just lose 3-4 hairs with each wash.
Leslie, the major shedding is soon after round two, for most.
GOOD LUCK!!!!!!0 -
Hello cappers!
Just checking in and catching up with all the posts...
JC - A big hooray for you for being done!!! Thanks for saying my posting helped you as you decided to do the caps - I'm so glad to pass on the support I had from so many others along the way.
Shipsgirl and Kaydee, hang in there and stay committed...I am sending you many positive vibes to keep those hairs hanging on! SockMonkey, a huge hug to you - so sorry the caps failed you and after all the hard work - at least you know you gave it a shot. I hope your hair grows back extra fast and extra beautiful!
I am now 19 weeks PFC and it really seems like a lifetime ago. Life is great and I'm really feeling back to my old self (perhaps a bit wiser!). I had my 2nd haircut last week, just another 1/2" trim and still taking caution with it. I am still shedding a little, but I think it's slowing down and I know it will stop within a couple of months. Still just washing a couple of times a week, then blow drying on cool. I have taken liberties with hair spray, as I just can't do much with it otherwise. I'll try to post another picture soon...my hair feels thinner but most of the time really doesn't look different than before - lots more days where I pull it back, but overall not too bad. I'm lucky that as my highlights have grwon out that I don't really have any greay coming in, so still looks okay when it's clean.
I hope you all keep up the good fight, and look forward to more of your success stories! All the best to you!
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Science gal - I finished chemo 2 weeks ago!, getting left expander removed and swapped for silicon on 7/15, plus rt side lifted and reduced - I just want them even. Dr. is planning for a C cup - down from natural D. I hope some feeling comes back - expander is hard as a rock.How was your exchange surgery? I kept about 1/2 my hair, but white at the roots now - soft and curly. I may be part poodle? Very glad to have cold caps and worked through most of my chemo.
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Hi Lalady- congrats!!!!! It feels so great to send those caps back, doesn't it?
I have a white poodle mix that I just adore, so maybe not so bad- haha. Seriously, if you dont like the white- I started using Clairol beautiful collection about a month and a half after I finished chemo- it just stains the hair, does not bleach it or anything harsh. Once shedding has stopped you could maybe try that. I had colormark that you dab on the part as well but it doesnt work great. okay but not great. I seemed to have a few more grey hairs after the chemo!
My exchange was good- SO much better than the expander. And yes the feeling is slowly coming back to the skin. Still have numb spots but they are getting smaller ever so slowly.
Hang in there and congrats!!!0 -
My friends came to visit yesterday- one is a chemo nurse in another city- and could not believe I still have hair. They were prepared to see scarves.
My friend the nurse is going to tell her patients she has seen proof that the caps can work.
Keep the faith girls!!! I am thinking about you.0 -
That's great sciencegal! Thanks to everyone for the encouragement. I am feeling more positive again; it was just a dip in the emotional road. There is nothing more I can do, so I just have to trust that the caps will work and I'll have some hair left at the end of this.
My next infusion is Thursday. I have only just started to feel recovered from round 5 (which was my first of paclitaxel). That really kicked my butt. I will discuss the side effects in my onc appt tomorrow and hope that they can be handled next time. But I just keep telling myself that there are only 3 more to go.
With hair. (that's my new mantra)
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Poor shipsgirl, you are being given a strong cocktail. It can't be easy. I hope you are feeling a bit better. When it's all over and past, you will be amazed at what you went through. I look back at my chemo experience at this time last year and it almost seems as if it was some sort of a dream. I went through last summer in a fog although I didn't realize it at the time. It is so nice to be feeling healthy, awake and aware again. I hope you will recover from your treatments quickly and return to your normal life.
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I found this study which is pretty recent (2012) on the paxman cooling system. What I find interesting is that it compares the effectiveness of scalp cooling to save hair depending on the class of drugs. Unfortunately it doesn't appear they tested carboplatin which I will be taking.
http://ijopp.org/jan_mar_2013/28-33.pdf0 -
Interesting thanks Marsha!
I had TCH as did others on this site, I think the caps work well with it as it is milder than adriamycin.
Thank you for sharing.
I am so sorry you have to go through this again. Cancer in my "good" breast is my big fear since I am a uni mx, but you give me strength.
I hope that everyone has a good day, with minimal shedding if you are a current capper.0 -
Curly, just checking in to say that is magnificent news! I am so thrilled to hear that you're doing so well with the cold caps. Frankly, I can't wait to tell the nurses at Sunnybrook. I am sending "You go lady!" vibes your way! Awesome.
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I am using the Cold Caps. I just had one TCH treatment on June 13th...12 days and and waiting to see what happens by days 15-17. I will let you know. I also hired a professional from Penguin Cold Caps to change my caps. I just couldn't put that pressure on my friends and didn't want the anxiety for myself that they were doing it correctly. Best decision I ever made. It's $350 per session but to me worth it. Next treatment July 5th.
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Aww, thanks Snax. You're a sweetheart.
I'm happy to say that although i felt pretty awful yesterday and am just starting to emerge from the fog, the dose reduction has definitely helped. The pain is there, but manageable and i don't feel as much like death as i did on the first round of Taxotere. 1 more to go in 2.5 weeks. Not convinced i will end with a reasonable amount of hair, but i know it's out of my control. It looks pretty bad right now (to me) and i am overdue on my hair wash but was too drained to do it. Will try later today. That won't be fun. I hate hair wash days!
Mom is a sweetheart and always says it looks good to her. I know i am harder on myself than anyone else - we all are - so i figure it looks a bit better than what i am telling you, but i still miss my regular hair. I look forward to regular life again. One more session, break for rest and then rads. I have to believe the rads are easier than this, though they keep telling me i will be exhausted. I will be so happy to get this darned picc line out of my arm!
Kaydee/shipsgirl - how are you guys doing?
xoxo
curly0 -
Awww..thanks Snax. So sweet of you! How are you doing?
I am happy to say that with the dose reduction, this round of Taxotere has been much more tolerable. Still some yucky stuff to go through, but i feel less like death than i did with the last round. I am not convinced i will finish all this with hair, but i know it's out of my hands. To me, my hair looks terrible, but sweet Mom keeps telling me I look normal to her. I know i am harder on myself than anyone else - as we all are - so it probably looks better than i am describing it, but i do miss my regular hair. I am so wishing for regular life now. One more tx, then a break, then rads. They keep telling me rads will be exhausting, but i have to believe rads are better than this! And no more poison into the body has to be a good thing! I can't wait to get this darned picc line out of my arm on the next round. Yippee for small excitement!
Hair looks yucky; haven't done the obligatory wash yet; hopefully will do it today. Was just too drained to do it before. I hate hair wash days! But i know it's out of my control. It is what it is.
Kaydee/shipsgirl - how are you doing?
xo
curly0 -
sciencegal - i know what you mean - i already have the worry and i haven't even gotten through the chemo yet. It's a scary thought - especially when you read about others going through it more than once. As if once isn't enough. Guess we somehow have to be positive and hope that we will be ok.
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Curly, glad you're coming out of the tunnel. I'm heading in and hope to have a smoother time this time because like you round one was AWFUL for me. They didn't reduce my dosage but at least it was accurate this time ( I did the math with them in the office) They also substituted emend for the zofran so I'm hoping for better results with that.
Hair still shedding at a steady pace but I'm hoping for the best. Thin and scraggly but there! Two down and two to go.
Hang in there all my fellow cappers...0 -
Judieheyjude and other Los Angeles area users-I know of the helpers in LA...I don't want to discount the benefit they might offer but they are not the 'professionals' they claim to be. They have very little experience yet, charge the same rate as a professional would. I know of this because I had been helping women in that area until a rep for the area was assigned. She had/has no experience either, although one would assume so. For 2 years I helped as a volunteer, taking only donations. When the new rep came aboard she had no experience and would contact me with questions. I provided both her, and Frank(the inventor of the caps) with the answers. I wondered why the inventor of the caps would not have this basic knowledge already, as the caps had supposedly already been in use for 15 years in the UK... I was disconcerted by some of the information provided by the company to the users of the caps. Reason being that it was inaccurate. I felt that the company's main objective was in recycling their caps for profit, and not truly that of saving a woman's hair-the information they provided reflected this. Because of this, and the dishonesty I found of the rep in LA, I stopped helping her. The rep for each area receives a commission for every cap user in that area regardless if they have any contact whatsoever with the user. The LA rep recruited her own 'helper's' in order to keep track of her commissions, so, that she doesn't lose any money. These helpers had zero experience yet charged the same rate as a professional would. It really irks me, especially after my doing this voluntarily for over 2 years! It's sad that people get so darn greedy. I have continued to help women with the caps because they do work, although better with the knowledge of the many variables accounted for.
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makingway - did you become a rep? I actually checked with Geralyn on how to do this, but she says wait until they have "policies" in place to discuss with her and to not go over her head to Frank. Seems funny to me. If they want reps, why would they stall? More importantly, I just want to help others get a hold of this product. Not sure why I need to "wait".
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Tomorrow makes day 14 for my mom! I'm so nervous! She lost a tiny bit yesterday and I cried my eyes out. But it really was a very very small amount - I think I was just high strung to begin with because I have had myself on a countdown and knew it was approaching.
On the bright side - my mom feels just like herself again with just a tiny bit of fatigue and heartburn occasionally.
I'm dreading her next infusion on the 3rd. I'm trying to ignore it and pretend everything is normal.
Is it true you lose most after the 2nd infusion? Or is it different for everyone? Does it slow down?
Thanks ladies
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Hi Chelsea,
As far as shedding, I started on day 17. It's like the individual hairs just slide out with no tugging. They sometimes hang below the other hairs. I use a lot of lint rollers!! I lost hair over my ears, which I think is common because it is hard to get the caps tight there. But you can't tell. My worst sheds were days 24-28, after treatment number 2 for me. And after my final one I shed a bit again. It has been 2.5 weeks since my final treatment and I'm still shedding but it has slowed a lot. I even got a hair cut and used a comb. A real comb! oddly enough my shedding really slowed after my cut. I did not expect that! Hoping I can color the grays with vegetable dye soon. I never lost brows or lashes although my brows did thin. I never lost hair on my arms or legs and thinned out a lot in the bikini area but kept a little bit. (TMI??!?). I should start seeing re growth soon. Hope that gives you some idea what to expect, even though we are all different.
Keep going ladies!!! You WILL get there!0
