Cold Caps Users Past and Present, to Save Hair
Comments
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Hi all,
I also followed Frank's suggestions and only lost hair right by my ears...
Concerning the fingernails, I did use black nail polish and I did not have any nail problems. I was on TCH and I was told that the black polish would help. Something with the light and the chemo?
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Hey Arlene ! Thanks 1/2 but not over yet!! The shedding this time is much less than before! Whew! I have lost hair around ears and on the sides. Only noticeable when I wear a ponytail. Overall I have lost 1/4 of my hair, maybe? I was lucky to have very thick hair to start. Good luck with # 3 and let me know what your onc says about the 4 x 6 TX. Mine was not receptive at all.
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Hi NMoss: Great on the hair. Hoping your SEs are minimal this time. I'm heading off to Vegas for #3 now. Will stop in Vegas for the dry ice and it will have hours for the caps to cool....and cool them I will. Hubby always thinks we don't need much ice but I'm getting more this time.
Most of my loss seems to be in the back.
Looks like you were up late last night. Sleep isn't something I do much of lately either.
With no washing last night (after 7 days) I am greasy.
Arlene
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Hi Arlene I cool down the day before. I go through about 70lbs day one and and another 150 over the week to do 5 days after chemo for 2-3 hrs a day. My DH has to go every other day to get it. Otherwise they heat up to quickly. I know dry ice is in Vegas for you but maybe you can find out in your area who gets regular and they can order dry Ice for you with their regular ice order? Sleeping is not happening at all, hot flashes are keeping me up. Greasy hair is better than no hair.
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Hi NMoss: In the chair. I checked everywhere in our town for dry ice and NADA. They are really down to the temp they need to be so it is the best I can do. My hair is scraggly but it is all mine. I'm getting premeds now and ready to put the caps on in 8 minutes. Dr. says my shed should be at the end because after the #of treatments I have had and the thiness of my hair, the caps should reach the scalp much better.
She thinks she can add back the Herceptin next treatment and then drop my chemo down to 4. She says the Herceptin (for me) is the big player her. Getting another MUGA scan next week...she is doubtful what the cardiologist saw during the last echo (which are not nearly as reliable as the MUGA which is the Gold Standard according to her and the Cardiologist.
I just wet down the hair and put on the plastic cap...ready for the frozen cap now. Asked for Ativan again as it helps deal with the cold as does the Steroid and it takes the edge off from the steriods. Then the nasty Taxotere - feet ready for the pea treatment.
Later, Arlene
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Hi Arlene I hope this goes smoothly for you with minimal SE. I was talking about asking any of your local people who order regular Ice they can probably order dry Ice for you? I am sure being Stage 1a helped your onc being in agreeing with the 4 TX. Mine is a stickler and believes better safe than sorry. Ultimately the decision is ours and our bodies know what it can or cannot take. I am agonizing over this decision, Ii feel bad because physically I am sure I can handle 6, but I am fearful for the long term SE that could occur and do not show themselves until after TX. I am headed for # 4 in a week and will go TX by TX until either something happens or I get to 6.It would help if I did not have that crazy Neulasta pain, its really doing a number on me, without that I would get to 6 for sure. I am thinking of you this week.
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I kept about 95% of my hair also. The hair I lost, I kept in a ziploc (just found the baggie the other night. I'm gonna keep it!) I used PCCs. The only visibly significant spots were at the nape and above the right ear, but I wear my hair down and you couldn't tell.
For neuropathy: my nurses recommended (and I used and I also recommend) all of these: icing fingers/toes during the infusion (I used Rubbermaid little frozen lunchbox ice pack thingies in my socks and mittens, changed them as they thawed), acupuncture, and taking L-Glutamine daily (I took a capsule but they recommended a powder). I still use the acupuncture and L-Glutamine.
All these things helped with the neuropathy, but my fingernails are still kind of chippy from being dry: I file them every day as they regain strength. I've begun taking biotin -- wish I'd taken that a year ago during chemo, it might have helped. I never had discoloration of the nails (TCx4@3).
Howard: it is great that you are paying it forward! It's been my mission for the last year. We can make such a difference in other people's lives.
I've got my next followup mammo in a week. None of the other followup exams make me nervous except this one. Wish me luck!
Susan
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hi ladies - has anyone been on AC or Taxol? I've finished 2 DD AC treatments. I'm feeling pretty good "all things considered" :>). I'm confident i can get thru 2 more ACs. Just wondering what's ahead with Taxol. Anyone???
Susan - good luck with that mammo .. i'm sure it's all good.
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Susan~
I am supposed to have my mammo appt.
I cannot get myself to call and schedule.
I was thinking of having it done at a different place -
NOT the place that told me I had cancer...
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Wondering if we have in writers in the group who would like to write a lettert the Ladies' Home Journal. In the May issue is an article by a woman who reflects on her daughters interest in growing her hair long to donate it to Locks of Love. She also reflects on her Mother's battle with cancer and her hair loss. Some of it applies to us, too. Her Mother wore a wig so "she could go to work, to the grocery store, or out to dinner without public scrutiny and that earnest concern she percieved as pity. ... Her hair loss meant she couldn't pass as a healthy person." "Hair loss makes a woman's experience as a cancer patient into a political activist, a revolutionary, an often-unwilling symbol of humanity's greatist fear- mortality."
I hate the whole pink thing. I'm glad that money and research is being done to help make cancer a thing of the past. But what is with all the breast cancer walks (three different ones in our area) that have ads on many times a day on many stations for months now? Isn't it a bit in your face and wasting a good part of that research money?
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NMoss: Yes, I asked them if they could get it for me with their other ice orders (we only have 1 ice distributor here) and they weren't willing to bring it in for me and neither were the grocery stores so I'll have to stick with picking them up in Vegas. Hubby had them SO cold today and we had my velcros really tight so I'm hopeful. The lady at the grocery store who knows why we are getting the ice, had me turn around and came out from the register to hug me for my success. She said my hair looks great.
All the nurses came in to say hello and check my status and all were amazed I still have hair so guess it is not as bad I see myself. One nurse said I'd see shedding but if I was going to go bald, the taxotere would have already done it...more hope. They don't think I've lost 50% but it sure seems like it to me.
Now for the 4 versus 6 treatments, my hubby is nervous about that and not so much the reduction but what happens if I go back on the Herceptin and then have to go off....what happens then? Start chemo again? Something we'll need to ask about but I imagine it won't be long until 4 is the standard for many of us.
Thanks for the good wishes for this week. Fortunately, I don't have any SEs from Neulasta - none which is amazing. After #2, I had no pain from anything just 4-5 days of feeling tired and yucky...I can deal with that. Doctor said #3 shouldn't be much different than the others but does agree the effects are cumulative and I could begin to notice more SEs...this week will tell.
Arlene
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NMoss,
I am stage II with a larger tumor and my onc said that 4 treatments were just a beneficial as 6. I also have not had to have the neulasta shot yet as my onc checks my blood count at 11 days post TX and determines if the count will bounce back or not and they always have.
I have one more treatment left and two more sheds, I have lost about 50% of my hair and I am hoping the next two sheds are mild. I have to wear a hat at all times and sometimes a 3/4 fall. I will be so excited when this is all over and I see new growth
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Good luck Leaann: One of my friends' hair started coming back while she was still on chemo so I bet you'll be close now too, but she didn't do the caps. By the time she was finished, she had 2" of new hair. She did only have 4 treatments (due to issues with chemo) but finished all the Herceptin. We are all so different. I had a cousin who had chemo back in the brutal days and he never lost one hair, so go figure. I think there are some here who might not have but most of us are on some harsh ones that like hair. I'm encouraged by my nurses and doctors and still thinking I won't need a wig but with either 1 tx left (if I reduce to 4) or 3 left if not, it is still a long haul. I'll continue with the caps regardless for hair stimulation.
My oncs plan regarding Neulasta was not to give it to me unless needed, but after #1, I went for my 7 day bloodwork and the WBCs had dropped to 1200 so I got the shot then and she said if they drop once that is the typical pattern so now I get it the day after chemo. As I said, fortunately no SEs from it (yet).
HOORAY you are almost done and life can return to some semblance of normal.
Arlene
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Hi DebRox- looks like you are in Orange County- so am I- Huntington Beach- and I am doing chemo number 4 today with cold caps that my sister and sig. other are applying- as they have been doing the last two. I am wondering who your person is that Frank recommneded because it would be great to have a backup. I always worry that there is going to be a time when I need someone... I had someone recommended at first...but that did not work out for her schedule after two times. I scrambled and my sister and sig other stepped up beautifully- I am so grateful. I can loan you things if you need them- not sure when you start... I have everything. Just FYI. I may even be able to help you if you need that....not sure what you need. PM me if you are more comfortable with that but not sure how to do that.
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Lmflynn - Yay! Congrats on coloring your hair. I'm still a chicken.
Anyone post chemo have a bump in your hair between the old and new growth? It's looks and feels like when you have a ponytail mark in your hair after letting it down. At first I thought it was me using product and not going all the way to the roots with it but, I've washed my hair a few times now and the bump is still there. Weird.
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Hi everyone
Michcon- I wonder if the difference (bump) between new hair growth and old hair growth you feel is because the new hair growth might have either a different texture or wave pattern. I have heard that many people after chemo experience new hair growth that comes in very curly or a different color than what they previously had. Perhaps the chemo somehow changes the hair characteristics. We should ask Frank if a person who had for example, relatively straight hair and kept it thruout chemo by using PCC's may experience new growth being very curly. Has anyone heard of this?
Julia- I think a letter/article for Ladies Home Journal would be very well received. I used to write for journals (both lay and professional) and if some of you would help contribute I might be up for doing it.
It is now 1 week since my 3rd TCH treatment. I seem to have a little more shedding but when I say shedding I see just a strand or 2 occasionally on the big tooth comb I use. So I am going day by day and trying not to obsess about it. I am using dry ice and one tip I have for those who are having issues with the cap sides keeping cold enough- I put small pieces of dry ice on the sides when I take the cap out of the tupperware container if the sides are not as cold as the middle (which often happens) this gets the sides colder fast. Sometimes I even press the cap down with my fingers on areas I feel are not tight/cold enough. It keeps my nails cold too by doing this
Yesterday I went to a "wig clinic" that was put on by the American Cancer Society. I decided to have a Plan B just in case. They had lots of very nice free wigs but I was so thankful that so far I do not need to wear one. The wig volunteers were amazed about my hair and very curious when they learned I had already had 3 infusions. They want me to keep them posted. I chose one quickly and will put it away and hopefully can just donate it back when done with the infusions. A funny thing happened in there- one person who came in to look at wigs looked at me and said "that one you are wearing looks nice on you" I wasn't wearing a wig, it was my own hair.
Regarding 4 TCH vs 6 TCH treatments. Considering the side effects I am having I think because of the chemo, 4 would be better than 6 if 4 has the same effectiveness. I have had ringing in my ears, which is annoying. This time after 7 days from last chemo I am quite fatigued. I had neulasta after each treatment but blood count has continued to go down with each infusion. I think that is why I am so tired. My oncologist has not mentioned 4 vs 6 option. What are the oncoloigsts saying about 4 vs 6 TCH treatments?
Thanks for all the wonderful tips/ advice support. This discussion group rocks!
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Hi everyone
Michcon- I wonder if the difference (bump) between new hair growth and old hair growth you feel is because the new hair growth might have either a different texture or wave pattern. I have heard that many people after chemo experience new hair growth that comes in very curly or a different color than what they previously had. Perhaps the chemo somehow changes the hair characteristics. We should ask Frank if a person who had for example, relatively straight hair and kept it thruout chemo by using PCC's may experience new growth being very curly. Has anyone heard of this?
Julia- I think a letter/article for Ladies Home Journal would be very well received. I used to write for journals (both lay and professional) and if some of you would help contribute I might be up for doing it.
It is now 1 week since my 3rd TCH treatment. I seem to have a little more shedding but when I say shedding I see just a strand or 2 occasionally on the big tooth comb I use. So I am going day by day and trying not to obsess about it. I am using dry ice and one tip I have for those who are having issues with the cap sides keeping cold enough- I put small pieces of dry ice on the sides when I take the cap out of the tupperware container if the sides are not as cold as the middle (which often happens) this gets the sides colder fast. Sometimes I even press the cap down with my fingers on areas I feel are not tight/cold enough. It keeps my nails cold too by doing this
Yesterday I went to a "wig clinic" that was put on by the American Cancer Society. I decided to have a Plan B just in case. They had lots of very nice free wigs but I was so thankful that so far I do not need to wear one. The wig volunteers were amazed about my hair and very curious when they learned I had already had 3 infusions. They want me to keep them posted. I chose one quickly and will put it away and hopefully can just donate it back when done with the infusions. A funny thing happened in there- one person who came in to look at wigs looked at me and said "that one you are wearing looks nice on you" I wasn't wearing a wig, it was my own hair.
Regarding 4 TCH vs 6 TCH treatments. Considering the side effects I am having I think because of the chemo, 4 would be better than 6 if 4 has the same effectiveness. I have had ringing in my ears, which is annoying. This time after 7 days from last chemo I am quite fatigued. I had neulasta after each treatment but blood count has continued to go down with each infusion. I think that is why I am so tired. My oncologist has not mentioned 4 vs 6 option. What are the oncoloigsts saying about 4 vs 6 TCH treatments?
Thanks for all the wonderful tips/ advice support. This discussion group rocks!
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michcon, i have that bump,all my new growth is like 4 inches long, there is no weight to it yet, i think that might be part of it, its coming in in a wavy look as well and being short i think gives it that pony tail bump look.
livcar, we spoke on the phone a couple of times, i did the AC x4 and taxol, i think your doing dose dense taxol? x4, i did taxol x 12, it is a breeze as in comparison to AC, i had no se's on any of the chemo, on Taxol i went back to work, much easier on your blood counts, a lot of the girls had bone pain, i did not, i used nail oil on my toes and finger nails, Taxotare and Taxol has a side effect of your nails falling off, i did not use a nail hardener, i used an oil to keep them moist, I used L Glu in powder form, 1 TBS 3 times a day for 4 days after infusion, i never felt the neuropathy,i did not do the ice on the toes or fingers, but a lot of girls did, its so hard to say what works, try them all,i used latesse on my brows and eyelashes and never lost any of them..about the 5th taxol i noticed my hair growing back where it had thinned.
susan, ill be thinking of you, it will be fine!!!! we did not come this far to do it again!!!
I have my appts next week with Foster and Alvarado at UCSF for my reconstruction, blaaaa, more DR'sArlena, can you double or triple up on the straps that follow your hairline? and then a third to go under your chin up over your ears and on top of your head? i put lil bags of dry ice on the sides of the caps to keep really cold when your kneading the middle parts of the caps.. you are almost there
love Chey
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Hey ladies. I talked to my dh about how he did my straps because I did not really lose any hair at nape or the sides. He said he put the first strap on from the lower backside and pulled it up more towards the top of my head and pulled very tight to overlap and criss cross the ends. The second strap started in the same place in the back nut slightly above the other strap but it was still patrially overlapping the other strap. He pulled this strap very tight and placed it more over my ears and temples to the front covering my front hairline. Again he pulled tight and criss crossed the ends. When he put each strap on I could feel it get much colder. He really pulled them tight. It was like he was pulling a sling shot when he pulled...I could feel the pressure when he pulled. I did not lose at temples or nape. I hope this helps a little. I did also massage caps every few minutes.
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What is the hair care routine after chemo ends? Did you keep with the once a week and diluted shampoo? For how long after? Anyone ending last summer - did the heat cause problems with fragile hair roots?
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Michon~ I was so scared....almost cancelled. But I have to tell you my hair feels thicker and healthier than it has since pre-chemo.
For comparisons with others I would say I lost about 20%of my hair..no bald spots, no more than everywhere else around my ears (although now notice sideburns that are about an inch long) nape the same ..did seem like more than everywhere but hairdresser noticed the new growth there most of all.
Forgot who asked, but I brought my own wide tooth comb to salon, I combed my hair myself, brought my own shampoo and had them be very gentle and use cool water only. hairdresser blow dried on lower level....she used two squirts of a root booster...wahoo I was so excited because I have such straight fine hair!
MOP~ After the first month PFC, I washed every 3-4 days in cold water and with the pure shampoo for the next 3 months. I have just started washing more frequently if I need to for events. I am just about to say WARM water! I'm a little over 17 weeks PFC.0 -
Chey: Thanks for the suggestions. I'll give it a try. I should have gone with the PCCs but I didn't but at least I have a decent amount of hair yet. And if I get to drop to 4 versus the 6 TXs, next one will be my last. I'm praying the Herceptin is added back and next TCH is my last. Glad my onc understood about the benefit of 4 vs 6.
Lots of good stuff here this morning.
Arlene
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Shampoo question:
What shampoo do you guys recommend while undergoing chemo? Did you use a spray in conditioner mid week on the hair, but not scalp? Did your hair feel dry and brittle?
Did anyone rinse with cold water daily just to feel better (clean)?
And did anyone continue with scalp stimulation inbetween chemos? Do you feel it helps your hair grow?
I'm very close to starting my chemo and of course becoming anxious. My hair has been shedding more than normal since my dx due to stress. So this makes me a little more anxious about the shedding during chemo.
Ive already started washing in cold water and going 2 days without a wash. It is gross, but I have to prepare. Just want to get this ordeal overwith.
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DebRox:
I think pretty much any of the organic shampoos are good. I ordered, Intelligent Nutrients and they seem to work really well and you can use them as a boby wash too. They are nice. Just google them and their site will come up.
I know some ladies do rinse in cold water daily...I can't bring myself to do freeze any more often than I need to. My hair hasn't been too bad with the weekly shampooing and this week by the time I shampoo (since I messed up my schedule due to chemo), isn't bad either. Sticking together a bit but ok.
I also don't stimulate my scalp because I try to leave my hair alone as much as possible. I think the more you leave it alone the better, I think!
Arlene
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DebRox: Go ahead and enjoy the warm water washes while you can, savor them! The cool temps will be part of your day for a long time as it is (and you'll get used to them). Anything you can do to help relax -- yoga, meditation, exercise -- will help you through this. I meditated daily, and it's one of the most important things I did. I got up every morning before the sunrise, and spent 30-60 minutes in controlled, rhythmic breathing, exhaling any sound or thought that came to my mind. I emerged clear-headed. Find a quiet, peaceful location (can be in your house, or a park, or anywhere). Sit comfortably, hands in your lap. Cup one of your hands in the other and join your thumbs at the tips (forming a circle), close your eyes. Take deep breaths through your nose (let it fill your belly) and exhale through your mouth. Any time you have a thought, or hear a sound, acknowledge it and release it as you exhale. At first, you will probably find that you are bombarded with lots of "chatter". As you practice, it becomes easier to let go of all of it.
Journaling is also a wonderful release. Many times, as soon as you've expressed your thoughts in your journal, you've released them from your mind to the paper. Let the paper carry that stress for you!
Meditatative breathing was especially helpful while going through rads, as my radonc uses a technique where I held a deep breath during the zap. This raises the breast but lowers the lung and heart so there is less scattering to the lung/heart.
I washed once/week, no more than 2x/week throughout treatment in keeping with the PCC protocol (it's in the video) only using a small amount of shampoo and gentle handling of the hair. I used Trader Joe's nourish spa shampoo and conditioner -- lots of wonderful botanicals, none of the icky chemicals to be avoided.
I rinsed my hair daily -- I swim every day. My pool uses ozone instead of chlorine, but I wear a cap anyway. During chemo I began wetting my hair as part of my pre-swim rinse, then put the cap on my wet hair, then rinsed thoroughly after the swim. By wetting the hair first, it did not absorb the pool water. I've kept that up because I like how my hair responded.
Don't do anything physically manipulative to stimulate the scalp. Your hair is really going to try to hang on -- you'll see -- and you want to manipulate it as little as possible. Baby, baby, baby it. Using cold caps out of the regular freezer (where they're stored between uses) will help stimulate the hair growth, but anything you shed will come back on its own, not to worry!
Try not to worry about what's ahead. You are doing everything you can to battle cancer and SEs. I can't remember if I wrote this here or to someone I'm coaching, but the list of possible SEs is a long menu. But, as in a restaurant, you wouldn't order everything on the menu, nor will you get all of the possible SEs of chemo. You might get a couple, but probably for short manageable times (curable within a day if not the hour).
I remember how anxious I was about how I'd feel after treatment, but I convinced myself to not waste a good day worrying about things that might not happen. A good friend reminded me, I didn't get any bonus points for doing that. I knew I was armed to conquer any possible SE, and as it turned out, I had hardly anything to cope with. Seriously, hayfever was the worst malady I suffered! Try not to think ahead, and just take each day as it is. Each one will be different, so make the most of all the days you are feeling great. Before you know it, this will be behind you!
Once you have your first session, you might find you relax a bunch. If you are truly anxious, take Ativan -- that's what it's for. There is no need to suffer through this! There is so much great information on how to nutritionally and medically manage all aspects of chemo, use all the tools that are appropriate and available to you. That's what they're for! Cancer is our wake-up call that we need to do things differently in our lives -- eating differently, drinking differently, taking better care of ourselves and devoting more time to our own well-being. I didn't use the cancer-card very much, but it came in handy in some other ways. For example, for the first time in almost 30 years my husband now vacuums! He even got himself a shop vac. Every time I see an opportunity, I point it out and he says "let me handle it" and get his man vac :-) By god, he shop vac'ed the patio last weekend!!!!!! It was hilarious but I just told him how wonderful the patio looked.
Motherofpatient: The PFC hair care routine continues long after chemo stops. For the first 3-5 weeks PFC I kept the once/week washing, because the shedding continued. Once the shedding slowed down some, I washed 2x/week, then 3x week, but in cool water and gently. The shedding lasted an amazingly long time -- several months. I wasn't prepared for that, but all was fine and new hair was growing like mad the whole time. My last chemo was June 21, but I didn't go to warm water washes until around Halloween when the shedding finally stopped. (I've always been a heavy shedder, since I have lots of hair, and only this week did my hair begin normal shedding again! For some reason, it made me kind of happy!)
Ang7: I know how you feel! I have a terrible time getting myself to do my breast checks. Isn't that horrible? I'm a grown, intelligent, medically literate woman, after all! Nobody knows my body better than me, but I'm afraid of finding another lump. Plus, the treatment side is so much lumpier feeling than before. I've worked with every one of my docs on this, having them explain what I was feeling in terms of scar tissue. It works for about exactly one day and then I can't do it any more. I found my initial cancer by doing a breast self-exam, confirmed by mammo and ultrasound, but my fear is of finding another lump.
Of course, if I did have a lump I'd want to find it early...
Cheers to all,
Susan
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Hi DebRox,
I am diluting Ph Miracle shampoo with water, and I use kenra conditioner only in the hair not in the roots. I wash my hair only once a week and bearly touch it. I use curling iron on my ends only and don't pulled.
I had my second treatment yesterday, I'm shedding around 100 strands of hair for the last 3 days, but only in the nape area, I think the cap doesn't cover that area well. I hope the shedding stop soon.
In my 2 treatments I haven't had neuropathy. I am taking vitamin B-6 twice a day for my nails and they look good. Don't file it. Frank said that we have 6 layer so I am doing only a french style but only the tip nothing on the rest of my nails.
Hope this info helps you. God bless!0 -
I also found meditation and journaling to be very helpful. I used the book of Psalms in the Bible. Many of the Psalms were written in very stressful situations and the writer found peace and rest from God.
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I exercised 5 days a week faithfully to keep stress and anxiety down. I have been using Burts Bees shampoo and conditioner. I don't get conditioner on scalp as I was bent over the tub with hair hanging down. I don't use much styling gel but use a small amount of Organix brand Moraccon Oil on hair after drying on cool. I have frizzy hair and it helps reduce that and smooths it out. I am careful to not get it near scalp at all and use such a small amount on my long hair.
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ArleneA. you did great!!! dont look back, i lost 60 % of mine on pcc, so please dont think about "should have" you will very happy at what you have left when your done. i promise!!! the more hair you have the more you shed..
dont stress, you are almost done!!! YAY!!!! long COLD road we have been on, lol.... you dont have cancer anymore! those cells dont stand a chance! and your gonna have hair!!!!! hehehe... you doing great baby!!!!!love Chey
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Cheyenna- loved your post. It is so good to hear from those of you who have been down the cold road and have your hair, health and positive attitude. I have to admit I am more anxious about the side effects SE's which are more severe after this third infusion and less anxious right now about the hair (which I still have) . Also I have gained about 18 pounds since the surgery and especially most of it since starting TCH. The weight is especially coming on in my stomach area which I have never experienced before. Have people had a problem with unexplained weight gain while on chemo? I read on another site that Herceptin seems to be indicated. If you have had weight gain, does it come off easily after chemo?
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