Cold Caps Users Past and Present, to Save Hair
Comments
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Marsha, are you trying cold caps this time?
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jc254 -- Yes, I've decided that I am. It took 7 years to get my hair looking this good. I will be doing carboplatin and taxotere in 4 weeks. I am starting herceptin next week. I had a complication in my DIEP surgery that caused a stroke to my optic nerve and trying to allow that to heal a bit before I get started on the heavy drugs.
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Kay - so sorry you have been feeling so bad. I had horrible constipation too! It was so uncomfortable!!!!! I thought I was going to die! I started taking Senakot S on infusion day and took it for about 5 days and I did still have some difficulty going, but I did manage to go every day. I also took some ducolox (I don't know how to spell it!!! - It's a stool softener). See if your MO is ok with you taking these for your next infusion.
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Ladies that used the caps,
Did you experience a little shedding after your first shampoo after chemo?
My mom washed her hair very gently, as the instructions said to do on day 3.
About 30 minutes ago... She started shedding just a bit. I mean... It was normal like if she brushed her hair... But we broke down and just cried.
Please give me some peace of mind. Is this normal?
I'm just devastated! I want her to keep her hair...0 -
If she was shedding due to chemo- it would not happen that fast. Most people report shedding on or after day 14-21 after the first chemo. I started shedding "down south" around day 14. I did not notice any shedding from my head until day 21 after my first chemo. Just realize that if your mom is not washing hair daily and brushing/blow drying like normal, you will notice more shedding when you do wash it. So much hair will normally come out when you wash and style your hair daily but now she is seeing all of the normal shedding at one time. Does that make sense? Don't freak out......it will be OK Chelsea! Read the dispair on my blog and then look at the photos. By reading my blog you would think I sounded like I was bald! LOL! I still ended with a FULL head of hair even if it was thinner by my standards. Have faith....the caps work!
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My shedding started slowing down yesterday which was Day 2 of my second chemo. But, without heat, I am always going to get shedding in my comb. So sometimes it is difficult to tell if it is excessive or not. I still have my hair though so I count myself a success.
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Try to keep it in perspective. We all shed hair on a daily basis, some more than others. I paid attention to how much I normally shed before chemo so I would have an idea if the shedding during cold caps became excessive. Like someone else said, I only comb my hair once a day and wash every 5-6 days so I expect to see more shedding than normal. I have been lucky so far. I definitely see more shedding than normal, but it has never been an alarming amount and never clumps of hair. In fact, I'm shedding much less than I expected with no bald spots or noticeably thinner areas on my head. I have to admit I still hold my breath when combing after a hair wash.
Women on the TC chemo regimen seem to have great success with cold caps and there's no reason to think your mom or any of the other new cappers will be any different. The first few weeks are tough while you wait and wonder if the caps will work. I was very skeptical when I began using the caps, but I'm now 4 days away from my final TC treatment and still have a full head of hair. The caps work : )
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After my hair washing right after chemo round two I had a wad of hair the size of a flat silver dollar on the side of the tub. I cried! That happened the next few times as well.
And my hair was/is fine. Thinner but no one can tell. It still has even coverage.
We have 250,000 hairs, or something like that, and can lose a lot before it shows.
Hang in there!!!
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Chelsea - I'm on ACT which is much tougher on hair. I had some pretty heavy shedding but still have a lot of hair. I can see it's much thinner but no one else can tell. I realize that with ACT I could keep shedding and lose it all (though the shedding has slowed down a lot). But over all, I'm encouraged and believe I'll get through this with hair. I hope that encourages you.
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mdg - thanks so much for the advice. I've added miralax to the rest of the pharmacy that is my nightstand now. One of the ladies in the starting chemo in may2013 suggested it. My mo suggested colace as well.
My body is just freaking out with this chemo meds... but I'm trying to remain calm. This board and all of you here help a lot.
As for the shedding... not encouraging. Looks like I'm three days ahead of schedule. On Friday hair down there started coming out in clumps... along with underarm hair. Saturday -head hair. lots of it. I was hoping to at least make it to day 14 (Monday) before any big sheds. Fingers crossed that things aren't messed up already.
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kay - hang in there! I did not do well with chemo at all, but I still saved my hair! I do believe it is genetics that determines your response to chemo, not how fit you were before, etc., etc. I had a very high fitness level prior to chemo, but it wiped me out.
Talk to you doctor about your symptoms. My MD had to reduce my dosage by 15% for subsequent rounds. Although I continued to have sx, it wasn't quite as bad. You can do this!
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I'm overwhelmed with cooler choices. I not sure what is going to fit the boxes, be cold enough. Definitely want wheels and handles. Any product recommendations?
How much does a 60 qt cooler with 50 lbs of ice plus 4 caps weigh? Ho do you get that into the back of an SUV if you are not strong? I'm wondering if there is a tool for that.
Thanks
Marsha0 -
Dancetrance -
Thank you for the encouragement! Ihave spoken to my mo about dosage on the phone and meet with him tomorrow. I'm taking my own BSA calculations in because I believe my dose was too high to begin with.
That being said, I'm convinced Body Surface Area is not the best way to determine dosage. I COMPLETELY agree with you. I think it has a LOT to do with genetics and the very individual way our CYP and DPD enzymes process the chemo drugs.
Like you I was fit going in, good diet, very well hydrated etc... but BOOM - this stuff hit me like a bus.0 -
I feel for you Kay, and I couldn't agree with you more. Scary that they used your pre-surgery weight. Ugggh. The bsa is a guideline...the best they have...wish they had a better way of knowing how much is really needed to be effective for each individual. There was a study published not too long ago trying to use some genetic tests to determine chemo dose (can't recall the specifics). So obviously, some research is being done on this, but we are long ways away from it being applied as of yet.
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Hi Marsha
Here are the coolers I used:
2 rolling 60 quart "Ice Cube" Igloo coolers
I got mine on Amazon:
http://www.amazon.com/gp/aw/d/B002VQ9PU2/ref=redir_mdp_mobile?keywords=igloo 60 qt. ice cube roller cooler&qid=1361981428&ref_=sr_1_1&sr=8-1
I think you may find them at WalMart too? They worked great and held 4 caps each plus dry ice.
I didn't label them C1 and C2 as instructed because that meant nothing to me. I labeled them by which cap number they contained. (1, 2, 5, 6) and (3, 4, 7, 8)0 -
Kay - I also had an awful time with my first Taxotere. it was 11 days before i stepped out of the house. Exhausted, every side effect in the book, and i felt like death. I felt like there was no way i could go through this again. Feeling much better now, and #2 of tax (tx #5) is this coming Thurs. I dread it. I talked to my med team and am hoping they are going to reduce the dose. The nurse says while they calculate based on averages, it sounds as though that number isn't right for me with all those side effects and reducing the dose is an option. So I am hoping that's what will happen this week. I too, am wondering what the hair success will be on Tax. I was on FEC for the first 3 and did pretty well. My hair is so much thinner but still decent coverage and people don't know what i'm going through. I do miss my thick locks though. This is day 18 from the first Taxotere and I am wondering if i will lose more hair. My lashes are getting worse, as are my eyebrows, so who knows. I have 2 more to go and am wishing for my life back.
Marsha - I am so sorry you are going through this again. A big hug to you. Are you using the caps this time?
xo
Curly0 -
I had a whole host of different side effects with my second infusion. No blurry vision- which is fantastic- but the fatigue was overwhelming and a constant headache with joint pain for the first time. All in all feeling better today. Noticed a thinning spot near my temple but managed not to cry- I look at the rest of my head and feel better.
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Yes, I found that brand coolers at Walmart - but I had to call around to several stores before I found one that had them.
They are very nice coolers to have - have taken them to the beach, etc. love the wheels!
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marsha1970, My chemo center accepted a donated biomed freezer. There is a non-profit www.rapunzelproject.org founded by a cold cap user and her friend. They will donate a freezer to your center if your center will accept it. You may want to check to see if there is a center in your area with a freezer already.
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curly - good for you for questioning the dosage. Sometimes the best way to not get average care is to kindly insist on being seen as an individual with specific needs and not just another patient. And our se's defnitely don't seem average. Besides I don't think I even got the average dose. I think it was 5m2 too much. So the looming tax #2 dread thing you're going through? Right there with ya.
I had a hair wash day today (day 13) and there was a lot of shedding - so i'm right there with you in wondering if this will work out for me. But since I'm feeling a little better for the first time in nearly two weeks - I decided not to add hair-worry to my day. I looked at the hair in the sink... took a deep breath... and decided to be happy about the hair sill on my head which is still quite a lot.
Then I took a walk! Days 14-21 here I come...
tmb - Sorry you got some of the joint pain - that ache is the worse. But so glad you past it quickly and are feeling better today. Hope you had a good Sunday.
Kay
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Curly, yes I am going to do the caps for this chemo.
Where can you get the browbwnds?
Marsha0 -
Brow bands can be rented with the caps. If you have a big head and the cold caps do not cover all of your hair - which happens to many of us - you can use the bands to wrap around your head over the exposed hair and snug them up against the bottom edge of the cold caps. That way all of your hair gets cooled and you don't lose a strip where the caps didn't cover everything.
Nausea - Emend, is the medication that is so effective in preventing nausea, just three pills, but it really works. I had to ask for a prescription, but I am glad I did because everything makes me nauseous - like just thinking about getting on a moving boat will make me queasy. I had no problem at all thanks to finding out about Emend on one of the chemo threads.
Constipation - ugh! I had it so badly after my first round so I sympathize enormously. I was quite impacted and thoroughly miserable. Milk of Magnesia after two enemas a day apart (sorry if TMI) helped unblock me the first time, but I was desperate. My nurse disapproved of the enemas only because she thought I might hurt myself. Ha! I was more worried about dying of blockage than anything else at that point - someone else mentioned the same feeling in an earlier post.
After that first horrible experience I acted preemptively by taking Dulcolax stool softeners the day before each chemo, the day of and for several days after each chemo until I was certain my plumbing was working. Check with your doctor first, but mine gave me the ok. I also occasionally took Dulcolax laxative - a different product from the stool softener, to move things along.
As drinking anything was hard - I simply couldn't face the taste of any liquid including water, eating a lot of watery fruit helped me stay hydrated - melons of all sorts, strawberries, etc. I found my feelings about various foods changed after each chemo. What I liked after one did not appeal after another.
Thrush - I always developed horrible thrush in my mouth a few days after each session, so keeping hydrated was a chore as water and everything else tasted or felt vile. Magic mouthwash was very helpful, both the prescription and the home made versions. I now wish I had also taken probiotics as I think it might have helped my body fight the thrush because I also developed a raging yeast infection - down there - and my Gyno immediately told me I should be taking pro-biotics - pills, not just a yoghurt version.
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Kaydee - what a great attitude you have! I know how disconcerting it is to see all the hair come out. I had my major shed day 20, 21 and 22. Soooo much came out, particularly from the back. I filled the garbage can several times. It was heartbreaking. But I still have coverage. When in a ponytail, no one seems to notice. My Mom keeps telling me she only knows because i tell her, but otherwise it looks fine. I can see a huge difference, but I tell myself everyday that it is still coverage and it is better than the alternative. I hope your shedding slows down for you soon. Which drug regimen are you on? Thanks for the advice re: the doctors. I find that they don't have many answers, which i find very frustrating. But I have heard a couple of times now that they can reduce the dose by 20% and that when they do that, people feel better. So I am hoping that is the plan for this next round on Thurs, because i just can't imagine going through what i went through in the last round.
tmb - don't worry about the temples. Everyone seems to shed there/around the ears. When I lift up my hair, there are bald spots by the ears, but you can't see them unless i lift up my hair. You're going to do great - hang in there!
Here's hoping we all have a good week.
Curly0 -
My thick hair shedding came after treatment 2 and continued until 8 weeks after final chemo. Thinning at temples, nape of neck and back of my head. I used creative combing and clips when I went back to work 3 days after final chemo. Now I am 5 months out and have about 3 inches of growth at the nape and an inch or 2 at temples and an inch or two the back of my head. I can now wear a pony tail whereas before there was not enough hair to pull it back and showed the buzzed area at temples and nape. It is generally filling in and I have to keep reminding myself that as thin as it got, I still had enough hair to not need a scarf or wig. Without the caps I would probably have an inch or two of hair all over and it would take forever to grow the shoulder length that I now have. Previously I had hair down my back but the shoulder length is great for Houston summer. Take care all in treatment. It will work. Be gentle with your hair and follow the protocals.
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I've spent the last couple of days in agony. I switched to Paclitaxel. One of the side effects is possible muscle pain. I opted for the drugs that prevent it but I don't think they were working!! anyone else experienced this? I was taking Tylenol 3 which helped somewhat and even smoked pot last night in desperation (I haven't smoked it since 1986). Today the pain is diminished considerably, though I'm still "tender".
I had planned to call in for help if it wasn't lessened by today. I guess my Onc will have to increase the other med. Kind of wish she'd said something like "this is your dosage, but if you have the pain, you can increase to this much". Don't ever want to go through that again!
On the good news side, my shedding is very minimal. Only slightly more than it would have been pre-chemo. Hope that continues!!
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shipsgirl, I think you said you were doing dose dense taxol (paclitaxel)? I had weekly taxol (for 12 weeks) and did not have any muscle issues at all. Or any other major side effects - it was so much easier than I imagined it would be! I wonder if you could switch to weekly infusions - I think there has been research indicating that weekly doses have just as good (or better) success as the bi- or tri-weekly doses. It would mean lots more cold capping, but...it worked for me.
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Saw my radiation onc today for a 3 month followup after 33 treatments Jan-March. All is good and I no longer need to see her. She has a new patient who asked about the caps who is having head radiation. I gave her the penguin website but I told her I did not know if it worked for radiation therapy. Anyone know?
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Patin, interesting suggestion. I'm bi-weekly, currently. I will ask my Onc.
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schoolmom - that's wonderful news! yay! And thank you for posting your previous post about hair growth. It's what i keep telling myself...nice to read from someone who has been there. My hair is also half way down my back, but curly. It shrinks in length, and when dry, is shorter now that there is less hair. I keep telling myself that hopefully i will at least have shoulder length hair when this is done, and that is much better than nothing. Round 5 is this Thurs. Then one more 3 weeks after that. Today was a hair wash day. Those always get me down.
shipsgirl - sorry to hear this round was so tough. i hope the next round is much smoother for both of us!
curly0 -
Just finished 4 cycles of Perjeta, Herceptin Taxotere,and I haven’t lost ANY hair, I mean it has been a miracle!
I have FOUR more starting my second round of 4 cycles of chemo, A/C (adrimicin/ cytoxin) and the nurse said I’m going to be receiving Emend anti-nausea. In their literature it states one of the side effects is Hair Loss, the nurse explains (so does the Emend website) that the drug stays in my system for 5 days after chemo.
- I’m wondering did ANY of you receive EMEND anti-nausea?
- IF not and you received A/C would you be willing to contact your doctor to see what anti-nausea you received so I can get the same thing so I don’t lose my hair?
- IF you did have A/C and Emend how did you do? my sister has me a little concerned.
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