Cold Caps Users Past and Present, to Save Hair
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Yes, I will be using the dry ice, as our Infusion Center does not have a freezer. I am still on the fence if I am actually going to do this, because I am having ACT combined therapy and there are a lot of mixed reviews on the success of keeping your hair with this treatment. But I will let you know, and I thank you all so much for your warm welcome.
What doesn't kill us makes us stronger, RIGHT??
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Mitzro - (((HUGS)))
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girlwithacurl,
I recommend apple cider vinegar for your dandruff. Check out this article
http://blackgirllonghair.com/2012/01/6-ways-to-use-apple-cider-vinegar/
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girlwithacurl- I use a squirt bottle with half apple cider vinegar and half water. I put it directly on the dry patches, then rinse with water. Then I shampoo with Giovanni smooth as silk shampoo. I condition with Giovanni leave in mixed with castor oil. I have very thick, coarse hair. I usually relax my hair, but of course that is not an option now. I am 30 days past my 1st treatment with minimal shedding. The apple cider vinegar definitely helps my dry scalp
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Coolers packed and I'm heading off for a fun day of TC #3!
Mitzro - If you have time, read through the posts of this thread. It takes a couple days to read everything but I found it very helpful. In particular, I paid attention to the experiences of the women having the same chemo regime as I am having. You'll see with ACT that there are mixed reviews but some women did well. Good luck!
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#3 in the rear view mirror, Warrior Woman- congrats!
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Hugs back to you!
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Nurse Ratched story of the day - Showed up for TC # 3 after confirming numerous times that I have the private room. She announced that they don't have a room for me. As I stood there in shock a patient screamed out of a room, "I'll be out of here in 10 minutes". I told her I was confused as I just confirmed 15 minutes ago. Ratched said to another nurse, "She was told she can have the room so I guess we have to give it to her".
Oh and it gets better...
Ratched was removing my IV and said, "I just don't see the benefit of the caps". I replied, "Well, my hair has thinned but I have hair". She said, "Most women keep their hair with Cytoxan &Taxotere. You would look as you do now without the caps."
Ratched is a passive-aggressive you know what. I have been very nice to her. All I need to do is to get through one more infusion without her sabotaging my hair or making me get a port.
Every other worker at the center was very nice to me. many told me that my hair looks the same and they cannot tell that it is thinner. Perhaps they mean it or perhaps they're being nice. Either way, it makes me feel good.
TC# 3 down and one to go. I STILL HAVE HAIR!
Thank you everyone. Hang in there cappers!
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Yay WW! I am very impressed you kept your composure with Nurse Ratched. Just think of how miserable her life must be for her to walk around with so much anger in her heart all the time. And to take it out on a cancer patient? Wow. She must really be an unhappy person.
I can't believe you only have one tx left. Seems like just yesterday you started!
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WW you need to let your MO know that the nurse was not supportive and was offensive. If his staff can't be accommodating to you, you would be happy to go elsewhere. I am so sick of people being so negative. We have so many negative things we have to deal with while going through treatment - the last thing a cancer patient needs is a nurse that is a biotch! My sister is a chemo infusion nurse at an NCI and she would be sick knowing this is how another nurse treated a patient. Sorry you had to deal with this.....I had a nurse like that at my MO office too.
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Forget Nurse Ratched. Pretty soon you will be finished with chemo and surgery, This miserable winter will be over, the sun will be shining and you will start looking and feeling like yourself again. You will not be spending the summer waiting for your hair to grow back. That's the beauty of cold caps. Hang in there, Warrior.
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Dancetrance - Yes, it seems like only yesterday I was a prospective capping newbie and look at me now! LOL Thanks to all the hand holding from awesome women here. As far as Ratched is concerned, I'm with you. Everything a person says and does is about them. This has nothing to do with me.
MDG - I have a better plan for revenge... heh heh heh. I am arranging for a biometric freezer from Rapunzel Project and I will meet with the center's foundation to work out the shipping costs. I may donate the money. I'm doing this for my MO who is wonderful and the women who will follow me. I mentioned in my correspondence to my MO that it will be important to get the nursing staff on board. I planted the seed. Later, after I'm done chemo and the freezer is plugged in and humming, I am sure I will find the perfect opportunity to drop the Ratched Bomb. Oh, and I will be looking good with my HAIR when the bomb is dropped.
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WW - we need a "like" button on here! Good one!
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Go get'r WW! Love it!
Success is the best revenge.
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WW - I love it. You just keep smiling with your beautiful hair and don't give Ratched the satisfaction of knowing she's getting to you. I had a Nurse who was snippy and condescending as well. At the end she said with a bit of humility -"I think you've made a believer out of me." I just ignored and avoided her and had fun (can you believe fun during chemo??) with the other Nurse who was super supportive and in awe of what we were doing. You have inspired me to contact Rapunzel and try and get a freezer for my infusion center as well. It would take the circus feel out of the whole thing with the coolers and all.
Congrats on almost being done!! Hang in there. Pretty soon it will all be in the rear view mirror.
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Thanks for cheering me on, everybody! I am moving forward with the assumption that I will keep my hair.
As I prepare for my big chemo party I thought I'd share with you the design of my tee shirts. Feel free to use the designs if you like them. I used designs I found on line that I believe are in the public domain and I hope I haven't violated a copyright. Also, I removed my name from the design on the back side for privacy. You can insert your name in the space if you like it. I'll upload a blank image so you can add your own text.
Now the big question...
Does Nurse Ratched get any champagne?
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"Great spirits have always encountered violent opposition from mediocre minds." Albert Einstein
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Wow I am so impressed with each and every one of you! Thank you for giving me the lift I needed today!
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Thank you atlbc and m1970! The ACV is a great idea. I tried it yesterday and will keep with it. I use it on my dog's itchy spots so it makes sense to use it on mine!
WW, your tshirt is awesome! And your nurse Ratched is wretched. I hope she has a vacation day on round 4.
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Hi Ladies! Hope you're all hanging in there. I finished my chemo in August 2013 and radsin dec 2013 and am doing well. I do still experience strange scalp pain though it comes and goes. its worse if i wear a loose pony tail vs wearing it down. It's been 7 months since i last wore a cold cap and wonder what is causing the pain. Anyone else experiencing this?
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LV - My shedding came without warning. I never had the headaches others reported. If you don't get information on this thread you may want to cross post on Hair thread. I've read a lot of discussions on there about the headaches, tight ponytail sensations.
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I started chemo 14 days ago with using the cold caps. So far so good. I know it is still a little early to tell but anyone else have feedback on my regimen? Thanks
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Mmm2014 I dont post much but I read almost everything - I am on the same regimen as you TCH/P having had my 4th of 6 treatments last Wed. So far I have kept about 70 percent of my hair. I have had constant light shedding, a little more the last week (making me a little nervous) dont know why. I have a great nursing/doc staff who tell me I am right on schedule from the other cappers who have been in my treatment center. So dont be nervous the caps work with this regimen. My eyebrows and eyelashes have thinned and my Onc. tells me not everyone loses them but if I do it will be after chemo ends. Ask me anything you want about the side effects, I am happy to answer
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Popping by to say Hi to everyone old and new! Wanted to tell Deelighful good luck tomorrow too!
Hope everyone is well!
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I did 4 TCH's in 2012 and did very well with the cold caps. My hair thinned (steady shedding, it stopped about 4 months post finishing chemo) - but not enough that anyone else could ever tell. Best of luck to you!
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So, the heavy shedding I experienced Days 17-20 has slowed significantly. Now, when I comb my hair, maybe only 15 or 20 strands end up in the sink, if that. I'm six days post second infusion. Would there be any reason to think that 17 or so days after *every* infusion, there'd be a lot of shedding?
Also, not sure how much of a difference it make, but after realizing the organic, gentle shampoo I bought at Whole Foods contained sodium chloride (!), I switched to Dermorganic. I've used it twice in the last 9/10 days.
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Mazie - From what I've seen with Cytoxan / Taxotere there are a number of shedding patterns. One is what I hope I'm having which is a big shed early and light shedding the rest of the way. I was days 18-30 and I'm hoping it doesn't pick up again but it could. I'm on day 44 now and so far so good. Another pattern is very little shedding during chemo and then getting hit post chemo with heavier shedding. Most people shed post chemo but not everyone. It goes for about 4 months for many. The third pattern I've noted is to have heavier shedding on pretty much the same days after each infusion. I wish I had a crystal ball. We all want to know how this will turn out. I'm leaning toward the theory that we each have a certain amount of older hair to be shed and somewhere along the way it comes out. I lost so much around days 24-27 that I hope I'm done with anything dramatic. If it were like that everyday I'd have been bald by day 30. It's so freaky to have hair coming out like that. Dermorganic is what PCC recommends and it's what I use.
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Warrior: I'm hoping your theory about older hair is right and all my old hair jumped ship last week. Are you wearing the caps in between infusions?
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mazie73 - you are going to be just fine!
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Mazi - The only time I wear caps at home is for 30 minutes after exercise when my head is all hot. I do it just to be safe. I don't know if it helps. I don't wear them at the gym. LOL
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