Cold Caps Users Past and Present, to Save Hair
Comments
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Ali - could it be bone pain from neulasta? Mine was horrible! It was indescribable and meds didn't help it. If so, try claritin and aleve for a few days and start taking it the day you get the shot and for a few days after. Bone pain can hit in the days following the neulasta shot. On my first chemo I did not take claritin and aleve and I was in agony. The other 3 chemos I did and I had no back pain
Hope that helps.0 -
Ali,
It's funny the way the brain compartmentalizes - immediate urgent pain (and there's nothing worse than back pain) wipes everything else out of your mind. I hope you recover quickly - take care,
Lucky
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Thanks for kind words, still stuck in bed but can get to the bathroom. I feel so bad I can't think about shower or hair wash because I just want to stay in bed. My sister has texted me after ten days saying this is scary. Well thanks sis for that how about calling me.
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Ali68; you didn't say whether you had the Neulasta shot or not, but if so, that might be it. I had horrible back pain after my first one and like mdg said, taking Claritin helped for later ones.
For you post-chemo girls, did you have any hair loss a year or so post chemo? I kept about half to 2/3 of my thick hair with the caps, and it grew back in nicely and thick over the past year. But now (14 mo PFC), I'm shedding again. Not as badly as during chemo, but lots of hairs on the floor when I style. I don't know whether it's just part of the natural hair growth cycle, or low estrogen, or what?!
Lucky60
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Hi yes I had my shot and I'm sure it had something to do with it. Big mistake hadn't washed my hair in a few days and it had got in a mess. I could have cried it was so bad I'm sure I have lost so much hair. I'm thinking will it stay to the end??? Feeling a bit down and sorry for myself today have been in pain with skin and not being able to go to the loo. my sister has upset me by saying she is depressed at having a vet bill for £1000. Then she said things could be worse and she was off somewhere nice at the weekend.
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Ali - I am sorry about all of this. We all can relate. I felt like I was going to lose a lot of hair and be bald and it DIDN'T happen. Have faith. I can also relate to your sister's comments. People around us just don't get it and continue complaining about trivial things when we are facing something much greater. It is hard not to be upset by that. It happened to me too. Hugs!
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Ali so sorry to hear about your back pain. Can your doctor give you anything for it? Did he actually make a house call? Unheard of here in the U.S.
Starting around day 17 or so I started to lose a lot of hair. It was coming out in small clumps and shedding more than the cat. I washed it Monday and still lost more. Despite that, It looks pretty normal to everyone. The last two days the shedding has pretty much stopped. It will be a week tomorrow since my second chemo (TCx4).
I agree with mdg. I think we will all be stronger and more compasionate in our lives after going through this ordeal. No one can relate unless they have been there themselves.
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Lucky 60: Are you on any AIs? Some of them cause some shedding or even hair loss for some women. The one I'm on does -- hasn't happened yet but I'm monitoring, and have gone back to cold water washes and taking milk thistle (to boost liver function) just in case. I did go through a phase where, because so much hair came in at once, the routine shedding seemed heavier. But it's the normal growth/shedding cycle straightening itself out.
Ali68: you aren't being too sensitive, but it sounds like some folks around you are being a little insensitive. In a way it's good that people are going about their business, but for those of us that receive this diagnosis, the world shape-shifts. I instantly had NO tolerance for whining, complaining, people being catty, and other annoyances. I got very good at simply saying "I have to go now", and going. I'd have been way too polite before...The last thing we need is anybody bringing their stress to our lives.
Also, for the back pain: try regular pain relievers for now, but certainly let your MD know of it in case you need something prescription-strength. And they don't know why, but Claritin works very well; my nurses said to take it a day ahead of time (I already was, since it was allergy season) and continue taking it for several days after the injection. After my first shot, I never had any pain or achiness. I also can't recommend acupuncture enough, it is fantastic.
Now that I'm on aromatase inhibitors, which have bone/joint paint as a SE, I've been using Claritin again...and it works! I meet with my doctor next week and will tell her of my discovery.
Susan
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Thanks everyone, today I comb my hair so I don't get tangles but it came out badly and I cried till hubby said have it cut shorter. What do you think? My back still hurts and my head is fuzzy. Not going to be able to go to work yet my head is all over the place so it will have to wait. I work with DH we have our own business together. DH is a financial advisor to doctors, so the last thing I want to do at the moment is do a seminar at a hospital telling them to get insurance incase they have an illness.
Do I cut my hair into a bob to my shoulders?0 -
ali68, Frank (of Penguin Cold Caps) does not recommend cutting your hair during treatment. Can you very gently get it combed out and then put it in a loose braid? So sorry you are going through this back issue on top of everything else.0
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Hi Laura, I need to do something I will have to do that or put it up. I can't do any cooking because it is so bad at shedding. Asked hubby to buy me a hair net he said SEXY. I look like crap and feel the same I'm sure tomorrow will be better for me. Have stopped taking painkillers they make me dizzy.
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ali68, the hair all over the place is awful isn't it? I've been vacuuming it up and taking it off my tops and jackets. I tried sleeping in a hair net and it kept my hair in place nicely so I didn't have to do as much to it the next morning to get it to look ok.
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Hi,
I just thought I would pass along a product my mother just gave me that works great on baldish spots. It is called Joan Rivers Fill-in-Powder. She just started using it this year as her hair thinned a bit here and there due to age. I had some thinning on top where my scalp was showing and used this. My husband looked at my hair in the light and thought it looked normal. I even used it on some gray I have under my bangs and along my part. It covered it and I liked the ease of it over ColorMark. If you do an internet search you can find their website. I can't paste a link with Firefox.
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Reading these threads about back pain made my realize what must have happened to me. I had my Neulasta shot last Friday and took Claritin 24 hours before and on the day of the injection. I also took Tylenol that day. I was fine and felt pretty smug about the whole thing -- but then on Tuesday I had incredible lower back pain. I thought it was from my exercise the night before but now I realize it must have been the after effect of Neulasta. Lesson learned -- I will take Claritin for 4 or 5 days post Neulasta.
I have had one chemo cycle (TC) last Thursday and of course no hair loss yet. My hair was already short (for surgery) but my stylist cut it even shorter pre-chemo. She didn't believe that cutting the hair would weaken the follicles (we will see). I can't stand not to rinse my hair so I am trying something different -- rinsing every day or two with cold distilled water (which should be chemical free). I'll report on any adverse effects. My MO says I will not start to lose my hair until a few days after my second chemo cycle. We will see!
I wanted to use Latisse but MO said to wait -- so I guess I may lose lashes and brows -- but there are worse things with all of this.
Hang in there everyone!0 -
I rinsed and conditioned my hair everyday except infusion days. I only put conditioner below the ears and I kept close to 90% of my hair. It is important to comb through hair to remove hair that has fallen out. Tangles can be a huge issue.
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Mom2JJ - most of us did not lose lashes until weeks after completing chemo. Mine went at about 7 weeks post chemo. So if you can start latisse once you are done, you may be ok. Mine came back super fast with latisse.
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I have successfully used penguin cold caps through chemo 4 out of 6 and I haven't lost any hair on my head. Everyone comments that my hair looks thicker than ever, I'm wondering if the cold therapy promotes hair growth. I use shampoo and conditioner that is ph balanced, paraben free, and sulfate free. (Burt's bees is my favorite). Gentle wash with warm water and pat dry. I have blond curly (fuzzy) hair so I use Redkin Anti-snap as a leave in conditioner and gingerly comb out wet hair with a super wide pick. And I try to use warm or cool air from hair dryer. So far so good. For eyelashes I use Rapid lash from Costco and my eyelashes are doing great.
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Be sure to mention the back pain to your doctors and not just deal with it on your own. Pain is probably nothing, but you kidneys are back there and could be stressed. Keep drinking and talk to an advice nurse or doctor that understand chemo symptoms.
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My back is still very bad but I did do the ironing which had been there a week, so pleased I got it done. Have slept in the day again and felt bad but I think tomorrow will be better because it's my birthday. Have put my hair up and looks ok I will wash it tomorrow.
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Haven't been here in a while and wow all the new girls...sad but glad we all have a place to go to chat with each other.
Appointment with my onc today and she commented on how great my hair looks and nice to know that I never went bald. She mentioned that it looks like FDA approval of cold caps is on the horizon and that I should be proud to have been a pioneer. Says soon, you walk into an infusion center and everyone will have the caps. HOORAY!!!! And as many know, I used the EGs.
Good luck everyone!
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ArleneA: Great to hear from you! I'm so excited about getting closer to FDA approval. Sounds like you are doing great.
Susan
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Happy Birthday, Ali 68!
Sure hope your back is feeling better.
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Arlene and Sebm9 and all happy cc users, Don't know if you saw it, but there was a post a while back from mdg. She has a blog and wanted to add other women's cold cap success stories and pics to it. If you pm her she will send you her email.
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Hi Ladies, just checking in. I have had 3 TC treatments of 4, and still have all of my hair. I had some shedding after the first one, but really very little since. My hair has grown considerably since chemo started; I now have about 1.5 inches of grey and black roots.I think that my having very fine hair and a smallish head has contributed to my minimal shedding, as my scalp seems to get very uniformly cold.
I have a couple of questions: for those who used latisse on brows and lashes, when did you start? Ihave a prescription but have not used it yet. My eyebrows have thinned somewhat. Any tips on timing?
Also, I know that the PCC site states that we can color our hair 3 months after the 1st treatment with vegetable-based dyes. Have any of you gone to a "green" salon and had your hair dyed? We have one here in town and I was thinking over starting with semi-permanent there.
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Hi Susan: Yes, doing well except for the hold on Herceptin for a while longer. Anyone had the CTC (circulating tumor cell) blood test. Understand it is relatively new. Kinda of scary actually.
Arlene
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Today I washed my hair and had a sink full of hair fall out. My hair was so bad from chin down i had to have it cut in a bob to the chin. My hairdresser said it had to be done and I agreed. It looks so much better even with the bald patch on top. Have got my wig and put it in the draw just in case.
What a day and it's my birthday.0 -
I am so sorry ali68.
Hang in there and Happy Birthday to you.
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Ali68, hang in there. Not a good way to spend your birthday, I know. I cut my hair very short pre-surgery in December and shorter yet pre-chemo. My only consolation is that there will be less to lose if it all goes. I have my back-up wig, hats, and scarves too. We just keep hoping for the best.
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Ali, I understand your cutting your hair to make it look better. I cut mine shortly after my last chemo, and it helped and didn't cause any more loss. Plus I trimmed my bangs throughout and didn't lose much if any there. Do you have thick hair or a large head? I had both of these and lost more than most as a result. But still had enough to get by at the end. Make sure your caps are tight. I lost hair only around the edges (caps didn't cover or less cold) and at the crown (caps were a little gappy there).
Sebm9, I'm not on AI's but went thru menopause as a result of chemo (14 months ago). We've been monitoring my estrogen levels and they are very very low. So maybe that's what's causing the shedding now. Hopefully that will stabilize once my body gets used to the new levels. Most other menopause symptoms have subsided and I am actually feeling great.
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HI CKK,
I'm 4 weeks pfc (4 X Taxotere&Cytoxan plus Herceptin) and I've still got most of my hair (i.e. don't have any bald spots) but it has thinned considerably and is still shedding like crazy - hope this ends soon. I have used Latisse since before starting chemo and so far my lashes look good - no noticeable thinning at all - my brows are a different story - very thinned out - even though I used latisse on them as well -
I did color my hair between treatment 3 and 4 - I went to an Aveda salon and got a no ammonia color - no heat processing- to cover the gray. I don't know if it contributed to the shedding that I'm experiencing or not - as it seems to have stayed at the same level from day 25 after the first chemo. I keep thinking it's a miracle that I'm not bald because it feels like I have shed so much throughout this process. My hair is very fine - but very thick so I had a lot to start out with - thankfully. I'm now taking silica, iron and black currant seed oil to see if I can stop the shedding and accelerate the growth.
For Ali -happy birthday - I am so sorry that you're going through this - and I hope it ends soon. I didn't have to get a neulasta injection so I don't know what you're going through - but I can appreciate how hard this whole thing is on you - hang in there and as soon as you feel up to it - move a little. Even a little movement will help you mentally and physically. Take good care - Lucky
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