Cold Caps Users Past and Present, to Save Hair
Comments
-
LeslieVilla - way to take charge - so glad you got your money back from paypal!
0 -
The first day of capping was scary! You will be fixated on getting it right and having hair....it beats being fixated on the actual chemo in my opinion and then waiting for hair to grow back for months after chemo ends. You can do this!! You will be glad you did when you have hair! Good luck!
0 -
Thanks for the PayPal tip Leslie. Penguin Cold Caps just erroneously billed me for another month too - even though I returned the caps more than two weeks ago.
0 -
I had the same problems getting back my deposit from Penguin Cold Caps. I emailed several times asking when I would be receiving my money and got no response. When they billed me for another month, I filed a complaint with Paypal and that got things moving. I eventually received all money due but it was a bit of a struggle. In my complaint to Paypal, I just wrote that PCC was not authorized to receive the most recent recurring payment as they had not provided any product or service that entitled them to receive the payment. I did not provide any additional information or support for my claim. The first thing Paypal does is contact PPC about the complaint and that seems to be enough to get PPC's attention and a refund. Use this email adress when contacting PPC: support@penguincoldcaps.com This is not the same email address Geralyn says to use in her return instructions but it is the one that they eventually used to correspond with me.
0 -
Hortense, I also had and continue to have swelling of my ankles and feet. It started during chemo and continues two months PFC. How long did yours last? My oncologist sort of downplayed it and had me thinking that it's not chemo related, but it's really bothering me. I did manage to gain weight during chemo and I'm just starting to get rid of the extra pounds.
0 -
Gildedcage, we would make sure to put a new cap on right before we left the hospital for home even if it wasn't time for a new cap yet. I live about 25 minutes from the chemo center so the timing was tight. Most times it was a little longer than 30 minutes between cap changes by the time we got home and put on a new cap. It didn't make a difference. Fortunately, we never had to change caps in the car on the way home, but there are some on this forum who did. Many of us here had some "mistakes" along the way and managed to keep our hair. The first time is very stressful, but you'll figure it out and be a pro by the time your second treatment rolls around. Good luck.
0 -
Thanks for the support messages. Yes, I know in my heart it will be ok. I just need to let my husband take charge on this, do the best I can and let the rest go. Otherwise, I'm just upsetting myself for nothing and what is the point in that? In the end, it's only hair. I'll do what I can to keep it but it's not the most important thing.
A couple of interesting things happened this week. On Wednesday I sent my DH down to the beauty supply to get me some kind of detangler that was nontoxic (he found one called ICON replenishing spray that works very well and has a great big pink ribbon on the bottle) and he got to talking with the woman behind the counter about why he was getting it for me. She told him that her brother used cold caps last year while he went through chemo and she helped him through the process and he kept his hair. First time I've heard of a man using the caps! Later in the day I called the local ice store to price out the dry ice. The owner asked me why I needed so much and I told him, "Well, I'm starting chemotherapy..." and he cut me off and said, "Oh, I know why! Yes, we have several people who are doing the same thing that get ice from us". Interesting! This place is right down the street from me so I've got some cold cappers in my neighborhood. Of course, I can't identify them because they look just like everyone else. I guess that's the point.
Anyway, I'm taking these little "signs" as proof that I'm doing the right thing and just to keep on truckin'. I'll let you guys know how it goes after my first treatment next week. 0 -
That's exactly the point! You'll be able to live your life as usual while going through treatment and only those you choose to tell will know what you are going through. There have been several times since chemo began that I've been out and seen women who are obviously going through chemo (no hair). Each time, I literally felt a jolt go through my body thinking that if not for cold caps, that would be me. I hope I would have handled being bald with grace and dignity, but I am definitely not the type of person who would have rocked the bald look. I am very glad I didn't have to. It's a powerful feeling to have some sense of control over the situation.
0 -
Good luck gildedcage! I also had to learn to put my faith in others through this process which I am not used to doing (I am very self- sufficient normally, sounds like you are as well), but they did a great job and the caps worked!!!
Good luck to you- deeeeep breaths.
We would also put on a cap right before heading home, and take the fastest possible route. I live about 20 mintutes away but sometimes with traffic it would extend to 40 or 45 minutes. The cap still felt pretty cold and it still worked. We ran in and changed it right away, before doing anything else. These are the "refrozen" caps by then so they dont take as long to soften up. It worked, I still have most of my hair and no one knows what I went through.
Jc I had horrific edema in one ankle after TCH chemo- some days I could barely even walk and had to wear velcro sandals that I could strap around my poor swollen foot. This happens to a lot of us. By three months after chemo it was getting better and now completely gone. Try to keep your foot up as much as possible, it helps.
Hang in there girls it will be over soon!!!!!!!!
Hugs0 -
Hi ladies,
I just finished my last A/C treatment on Thursday. Now it's on to 4 infusions of Taxol in 2 weeks. I've had a lot of thinning lately. I know I'm lucky to still have so much hair - but getting used to seeing more of my scalp is hard to take. My hair is still long (to my bra strap).
My question: what do you use to keep your hair back thru all this? During the day - at work - at home?
I feel like more hair comes out when it's not tied up. I girlfriend bought me bandana caps (if I lost all my hair). They're cotton and don't pull on my scalp. But is it ok to keep my hair covered? Just looking for ideas and suggestions for these last 8 weeks and beyond.
Thank you!!0 -
annie I covered my hair loosely with a bandana and had no problems. It helped cover up the ugly oily mess my hair was between washings.
0 -
jc254 - My Oncologist, who is the head of the breast cancer center at NY Presbyterian Hospital and widely considered to be tops in her field by almost everyone I mention her name to, told me the swelling of my feet and ankles was definitely caused by chemo. Mine took about a month or so to go away, but I remember having all sorts of fun side effects that came and went for a while afterwards. Swelling was among them. Thankfully, after a year, they are a fading memory.
Every month I would look back and think in wonder, "I am so much stronger than last month!". Chemo takes a surprisingly long time to recover from. I was told to expect to feel strong and like myself again about seven months after chemo, and while I was much better, I didn't look entirely healthy the way I wanted to. I do now.
0 -
Annie, I used tiny baby sized claw clips and put a few on each side to keep my hair back wthout straining it, and keeping it away from me constantly touching it. Great that you've kept so much through A/C - that's a tough regimen. Good luck with the rest of your treatment!
Gildedcage, I agree with the advice to change your chemo day to get an earlier time...even without capping, it can be a long gruieling day and best to start early so you can then come home and rest. I had to change times at my center and once they saw the first process they bumped me up even more the rest of the times. I had to stop and change caps every time once on the way home...very interesting for sure...once in a hotel lobby, once in a parking lot and once in the backseat...I worried a lot every time that we'd mess something up, and in spite of a couple of missteps, all went well. Once you get to your second treatment and still have yoru hair, you'll know the process works and just repeat it each cycle. All the best to you this week!
0 -
gilded cage - it is definitely overwhelming the first time you do this, but it gets easier and becomes like factory work - you won't even think about it the more you do it. We had to change caps usually twice on the way home. I was a spectacle in parking lots or even at the front of the hospital; wherever we happened to be when it was time to change the caps.
Thought I'd give an update; been a while since i've been on here, but so nice to hear how everyone is progressing.
If you remember, i estimated i had only 20% of my hair left. I had a lot of hair to start with, it is too thin to wear down, so i put it up in a clip to try to camouflage the thinness. There are no bald spots on top of my head. Well I am now 6 weeks PFC and there are many baby hairs at the front of my forehead and the sides by the ears where there were bald patches have started filling in. Hard to say what is happening in the back; it is extremely thin. I think perhaps there is some growth, but hard to tell.
As for the itch i was complaining about, thanks for motivating me to wash more frequently. I went from washing every 5-6 days to washing every 3rd day. The flakes are sooooo much better now and the itch is much much better also. The shedding is minimal for the last couple of weeks, even after washing, which is wonderful.
I am using colormark on some of the white hairs, and while it helps, there are a ton of white/grey hairs all over my head which just can't be covered by the colormark. So i am working up my courage and think i may try herbatint (i think this may be the canadian version of naturtint) perhaps in a week or so. No ammonia or peroxide. Hair seems a little fluffier the day after each wash.
Still waiting eagerly for lashes. Don't like the look without them. My brows are starting to grow again, but have a way to go.
The thing that is odd to me is that the hot flashes from chemo seemed to get much better as i finished chemo, but then in the last few weeks, they have really gone crazy. And I haven't even started tamoxifen, which has me concerned. My doctors weren't overly agressive with a start date of tamoxifen; have left it to me. I was going to start it tomorrow (2 weeks into radiation), but am thinking maybe i will wait one more week.
Radiation is going well so far; there is some darkening of the skin, and a bit of soreness, but nothing to really complain about at this point.
I was reading up on side effects of tamoxifen and this has me very concerned. How is everyone finding it? There are some really scary potential side effects. But of course, there is no choice but to take this pill. I even read somewhere that you should avoid alcohol altogether. Is anyone doing this? I like a glass of wine from time to time, so i didn't like reading that!
That's about it.
Hope everyone is feeling well.
curly0 -
I don't have wine as much as I use to, but I have it when I want it. A girl needs a little wine from time to time!
Glad to see your post Curly!!! 0 -
I still drink on the weekends. I refuse to give up one more thing to cancer. I figure the Tamoxifen will help block any of its effects. That's a really bad attitude, I know, so don't follow my example. But you asked!
Tamoxifen side effects are scary indeed, but you do what you gotta do.
0 -
Curly so good to see you post! Sounds like you're getting there step by step. Glad to hear you've had some relief fom the itching and flakes.
Right there with ya on those evil flashes. Will be really glad when those go away.
Take care
Kay0 -
Hi All!
I haven't had to have chemo myself, but I have a friend who used PCC's and they WORKED for her. She lives in S. CA.
Just wanted to let you all know/encourage you...:)
AND, I have a ? :
What if someone can't AFFORD cold caps? Is there financial help available? Who knows--I could find myself needing chemo some day, so I'm curious.
Thanks!
Violet0 -
Hi Curly! Great to "see" you. There is a thread here about people on Tamox with no side effects. I have checked it out, but some people were talking about it on another thread. When I get closer to having to deal with it, I'll check it out also.
0 -
I'm on Arimidex and my doctor recommended a "soft" start - taking it every third day for a week, every second day for the second week and then every day on the third. So far my side effects have not been bad. It made sense so that is what I did. Perhaps it would help those starting on Tamoxifen.
Violet 1 - It is so nice to hear another success story! I'm glad cold caps worked for your friend and hope she is doing well.
To answer your question, there is no financial aid for cold caps that I have heard of so far. However, as they run about $500 a month, maybe friends could raise money to help pay for or off set the cost. I would certainly do so for people. In my area, friends and family of patients often throw fundraising parties or events at local venues to raise money to pay for costs not covered by medical insurance.
0 -
Hortense , what a great idea to ask people to help raise money to save the hair. I'm 3 weeks now PFC and random scalp pain and shedding stopped. THanks so much for encouraging me through my symptoms also.
I used a very gentle product called NATURTINT at whole foods to color my hair a few days a go , and so far it's good:) My stomach pain is amost gone and I just have to deal with numb legs &feet and Oh yes the HOT FLUSHING. If i coudl only stop eating .. I'm feeling like a fat little butterball 10 lbs over pre chemo. Every day contiues to get better though! Go in for my Pre-op appt in 2 days getting ready for surgery on sept 10.
0 -
I saw my BS yesterday and she was thrilled to see my cold cap results! I encouraged her to let others know it's at least an option and that I'm happy to talk with anyone who's interested, and she agreed. Baby steps, right?
Curly, I think your ovaries are confused after chemo and hence the hot flashes. Hopefully once you get further pfc and steady on the Tamoxifen things will stabilize. I have not had any side effects although I do have to take aspirin every day because I have a genetic factor for clotting which can be caused by tamoxifen. I've followed the advice to take it at night and also to notice what you may have to eat or drink if you're getting flashes...some tied it to sugar or other foods, so you may have some triggers. I was scared to start taking it, but so far, things are fine. It does list weight loss as another side effect - wish that was one I would get! I still have a few pounds I need to burn off and it has been slow going. Since the doc is giving you time, I'd say to wait until after rads to start...give your body a little break to just manage one thing at a time. I started the pills about 2 weeks after rads. Good luck!
0 -
OOPS - I mean to say that tamox can cause blood clots not that it causes the genetic factor. Another thing I just learned yesterday when I went for an eye exam...tamox can sometimes build up debris from the drug in the retina, so I need to go to an opthamologist to get a baseling test and then repeat each year I'm on the drug. Glad my eye doctor was thorough enough to ask about my treatment and recommend this.
0 -
hope49 - yeah, I wish the weight loss side effect would hit me too!
Interesting about the eye thing - not mentioned by my oncologist. Is there anything that can be done if you do get the buildup? I have horrible floaters and would hate for anything more to affect my vision.0 -
OMG! I need to vent! My MO's office just called to confirm that I am on the schedule for Thursday chemo (first one, ACx4). I went through my list of questions to see if she could answer them (most she couldn't... said to ask at my chemo class tomorrow). One of them was how long my premeds would be, since I have to wear the cold caps for 50 minutes before actual chemo drugs start. I already knew they are not very enthusiastic about me using the caps. She started laughing and said, "I'm thinking it would just be easier to lose your hair." Seriously?!?!? You work for an oncologist and you say something like this to a cancer patient? She may not approve of cold caps or think they are a quack or whatever, but it's MY business that I am going to try them. Holy cow I am so mad. Hubby says maybe she was just trying to keep it light and be funny, but no. She was seriously amused and pretty much making fun of me that I'm thinking the cold caps will work.
Normally I'm not a quick on my feet thinker, but I immediately responded with, "Ok, how about you lose your hair and I'll keep mine?" Would she still be laughing if SHE was going to be bald in two weeks?
I'm trying to stay mad so I don't cry. I hate this whole thing so much.0 -
Lighthouse, well it certainly would be easier for the onc and staff if you didn't go to this trouble, but of course you know it's worth it. I think oncologists just get desensitized to the losses we face, our hair, our breasts, I could go on. The make light of it because they see it every day but its not happening to them. People tried to minimize loosing my hair and I'm like, not buying this. Remember I already lost it once. I don't care how fabulous others say I looked bald, that's not how I felt, and that's all that really matters.
I had a lot of anxiety about the first time, but everything worked out and it really wasn't hard for them to work with me on the timing. One time the chemo took a little longer to get ordered and we had to do a few extra caps, but no big deal. Just remember that you consent to the medicine so if you need 30 more minutes just demand it when they come in to push the meds. I just tried to be nice to everyone and tell them what I needed and everything worked out fine. I do think if you come in there with a can-do positive attitude that the nurses will follow your cue. We make jokes about how silly the caps look and how we could dress them up with scarves, fruit or antennae.
I do make sure I take my circus out ASAP if anyone is waiting for the room, but they told me last time no one was waiting so we waited until after our next change. I try to do what I can to not be a burden so its a positive experience for everyone.0 -
Had my first under the spary wash and used my old shampoo and conditioner (Nexium). Still used the spray-on when combing and no heat. But I have to say my hair feels cleaner than it has- I just don't think sink washes work as well.
Will use blow dryer in a week or so if this goes well.
0 -
lighthouselady...
Whether she was saying this in jest or not, that was terribly insensitive and completely out of line. I hope you bring this up to her boss when you are in Thursday. I think a comment like this needs to be reported. Good luck with your first chemo and cold caps. They worked well for me even though the process is terribly tedious, it's worth it.
0 -
lighthouselady, That is appalling! I would report her too.
Make sure they work with you on your cap timing. They are making a lot of money on your treatment and they need to accommodate you.
0 -
Marsha, you made me laugh. The caps do make you look like an alien and antennas sticking out the top would just complete the look!
0
