Cold Caps Users Past and Present, to Save Hair
Comments
-
DebRox: To hell with the negative nellies....it sure does anger us though. Fortunately, I didn't deal with that much in Vegas with my nurses and actually each time I came in they were checking my hair and giving me the thumbs up and I started showing them all the new hair and they were amazed how quickly and nice it was coming in and that I wasn't bald. I got really lucky, I think! Still haven't had the courage to got get my pixie cut yet and chop off my little pony tail and hubby isn't sure if I should either. Just don't know!
0 -
DebRox- some nurses are in the field because of the money they make and don't have the vocation. I think, if a person is not compationated and care for others they shouldn't be in the medical field.
Mdg- happy belated birthday!!
Tiki0 -
Debrox- I think you should make a complaint in a professional manner. Her remarks are mean and untrue. You should not have to put up with that! BC sucks enough. You are paying for her service and her bedside manner sucks. So many woman on this thread said their hair grew in thicker and better. With out the caps, we would all be bald for at least two months after our treatment. Her job isn't to judge your descion to save your hair. and make predictions about something she knows nothing about. How many PCC users does she know? She crossed the line. You should ask her where she got her information because from my experience with the caps, we are the only ones who know!!!!!!! ( that is in the states) And we are all learning as we go.
There are three other woman using the caps now where I did chemo. According to my nurse, they are doing okay.
I am hoping my fine hair comes in a little thicker like the other ladies that have posted. I am dreading the idea of eyebrows and lashes falling out.
0 -
Debrox- do you shed 100 hairs while washing in the shower or over the course of the day?
0 -
Soccergirl: So right. Now don't worry too much about your lashes and brows...I finished chemo 6/6 and haven't lost mine yet and assuming this late, I probably won't. Also, the hair on my arms is coming back but not the whole arm, there are a lot of bald spots, BUT my head that had the ElastoGel caps never got a bald spot....thin yes, very, but not bald and coming back fast and furious. And also the down below hair is doing the same as my arms!
0 -
Arlene- That is so good to hear. I can't wait to be where you are !
0 -
DebRox, Make sure you tell your MedOnc how that nurse made you feel. It's important! That nurse should be positive and supportive of you. Her bad attitude is not just about your hair, it is about her toxicity. She's surely spilling it all over other patients also, and you have a right to not be exposed to it, and your MO needs to know her nurse is doing this. It is totally within your rights to ask that nurse not be assigned to your case in the future.
Btw, don't worry, your hair is going to come roaring back thicker than ever!
Cheers,
Susan
0 -
It is so funny that some many of us were told from oncologists/nurses that the caps won't work, and they do work! We found this out not from the medical field, but from communication of others users via the Internet. We have acess to some many primary sources (people) regarding so many issues related to breast cancer. We are lucky because even the best doctors and nurses don't know everything. It is amazing I found out about them. To be honest, my family didn't think they would work. They were so happy to find out they do work.
Susan, does the hair come back thicker in other places?
0 -
I think the hair comes back thicker in other places.....I just signed up for laser hair removal in the bikini area. The hair on my legs seems more bristly and thicker too. I have more hair on my arms than I ever did.......just a little bonus with chemo I guess.
0 -
I notice I have more hair all over my body than before. But in the area that I had laser, it didn't come back.
Soccergirl- my dr told me that the caps didn't work, but I told him that I want to experiment. In every treatment they were surprise to see me with hair. My dr told me that probably because of my self- esteem I did really good.
Tiki0 -
What about facial hair? Am I going to have beard?
0 -
soccergirl: Too funny! My face does seem to be hairer than before but no beard and fortunately I have a light complexion so that hair isn't real visible but to me.
Now, nearly 4-1/2 months PFC, I think I shall go in the pool and get my head wet and not worry about the chlorine or perhaps I'll just float around.
0 -
A swim in a pool sounds lovely!
0 -
Hi everyone, Happy October! already! About hair regrowth: my head hair has come back roaringly thick, and with denser curls (it's normally curly/wavy). It also grows very, very fast (or has, in my case). I have to shave my legs every single day, sometimes twice a day (like if I'm going out at night). Interestingly, I shed the gray during PCCs, and it has not come back. My other body hair is pretty much what it was before. At first it came back with a classic "post-chemo fuzz" - arms especially, but I spend so much time in the sun that it's blonde and not noticeable. It eventually goes away.
For those who are fielding discouragement or doubt from members of your care team: my team members were skeptical to various degrees. ALL of them now recommend PCCs. In fact, one of my doctors contacted me to see if I'd help her best friend use them. Now *that* is a recommendation.
It sounds like it continues to be most effective with TC treatments, variable with ACT. When I first went to the PCC website (1.5 years ago) there were links to studies showing the efficacy with various chemo cocktails, and I remember Frank saying that the success with TC in the US (up to that point) had been very near 100%, but was about 80% with ACT. There are so many variables -- liver function, the other chemicals in your system because of surgeries and anesthesias, age, so many other factors -- it would be difficult to isolate them all, but I hope now that initial studies are beginning that future studies will drill down further. Of course, condition of the hair itself is no small factor, too.
Btw, I did my Swim Across America swim last weekend and it was *incredible*! The water was rougher than I expected (swimming from the Golden Gate Bridge to Crissy Field, 1.5 miles) but not as cold as I expected - the wetsuit did its job and, of course, my threshold for cold has forever changed :-) While on the boat heading to the jump-off point, people had the opportunity to say a few words about why they were swimming. One of my teammates, a pediatric cardiologist, tapped me on the shoulder and said "Get up there!" I talked about how I wanted to try the swim last year but was still going through my own treatment, but that I swam every day nonetheless (as I have for 25 years). Big round of applause for that. I talked about how important the fundraising was because I'd benefitted from new research at every step of the way. Then I spoke of how I'd helped with a new protocol and talked about PCCs. When I mentioned the -35C temp, one of the 8 olympic medalists swimming with us said "Then that bay water is no problem for you, is it!" There's nothing like an olympian hugging you and telling you you're inspiring! Actually, just the hug was pretty awesome :-)
It was funny, when I visualized my swim ahead of time, I imagined getting to my zen zone and having time to think about all I'd been through, all the support I've had, all the incredible love that has become part of my life in whole new ways. I envisioned a cathartic, cleansing, strong swim. WRONG! As soon as I jumped in to the water, it was about survival and nothing else! The water was rough, the current strong, and every breath and every muscle ache meant nothing more than I got to take the next one. In a marathon or a bikeathon you can stop, tie your shoes and try again next year. When you jump in the water you have to keep going, to live! I realized I've never had that feeling, except maybe when I received the initial cancer diagnosis.
But, I did it. I made it to shore in exactly 1 hour. I definitely plan to do it again next year.
Cheers,
Susan
0 -
CONGRATS Susan. Great job!
0 -
Susan, You are amazing. When I stick my feet in the bay for about 5 minutes, I feel like I will get frostbite. Congratulations on the swim and a BIG THANK YOU for telling others about the cold caps You are quite inspiring and I really liked what you said . When you jump in the water you have to keep going, to live. It reminded me of cancer treatment in general - it may be uncomfortable but if you keep the result in mind, it will make it a lot easier to get thru it. Congrats and big hug, Conie
0 -
Susan, you are amazing!.....what an accomplishment!...I'm thinking about trying triathlons ..I'm a runner....and the little swims are my greatest fear ...I will use you as inspiration.
0 -
Glad you liked the t-shirts. Would anyone buy shirts and various products if we put shirts and various products for sale on CafePress? We could use the profits to help some sisters who can't afford the caps.
soccergirl- If your natural color is darker than your colored hair, it is very hard to color you hair gently. The products that are easier on your hair deposit color, not lighten it. I did use a color depositing shampoo a bit after chemo. That kind of evened out the colors a little and gave me an ego boost. (If you are considering a particular product, call their help line and ask) I did a professional coloring job that was supposed to be more gentle at a little over two months post chemo. Talk about feeling terrific. I did not notice any more shedding after doing it and the energy surge it gave me was worth it.
For those of you considering cutting your hair- I trimmed my hair thinking it would look thicker and better. Well, it did a little, but remember that it is not like "normal" hair growth. There is a gap in length between the old hair and your new hair as it starts growing it. Trimming thin long hair = thin shorter hair. Really look at your hair and it's layers before you make the trim decision. Also, my hair went from hair with body to curly hair. Even the hair that stayed in went curly. That meant that my shorter hair looked even shorter curly.
Best to all, Julia
0 -
Susan you are our inspiration! Congrats on the successful swim.
0 -
Julia: this is great info. My hair is a lot darker than the roots, so I guess I will just wait. Sarah Jessica Parrker rocked dark roots, so I will give it a try. Interesting tips about trimming the hair. How long did it take new growth to catch up to old old hair? Did your hair texture return to normal and I believe you posted that your hair is now thicker than before?
You look great in the photo and must be so pleased with your results.
Susan: Great Job!!!!
0 -
BTW : Julia I would buy a t-shirt!
0 -
Hmm...Julia, I would probably not wear a t-shirt since I do not like to wear them BUT I wonder if we could make car magnets? I would love to buy one of those...
0 -
Julia...I would certainly buy merchandise in order to help out other sisters out there! Magnets are a great idea too!
Tori
0 -
congratulations Susan!!! You are truly an inspiration. You give all of us hope and strength.
0 -
Susan- Wow- I don't even know what to say about your dedication. I hardly got off my couch for the first two weeks after each chemo- and there you are swimming each day! I am humbled.
So many of you have already asked what I wanted to know about and I am reading all the great answers - so -thank you, everyone.
It is so good to see some familiar names on here as well as new ones. - it seems we are all pretty much experiencing similar things, not surprizingly.
I too have contemplated cutting my 'thin, thin pony tail' because it is sooooo hard to do anything with but now I read that it really isn't a cure for the uneven-ness of my hair (makes perfect sense unless I cut it down to the new growth)- and I read hear that cutting doesn't really solve anything. I am not sure I can wear an extension well....I may try that first, but I am still shedding so I hesitate to do that too. My hair IS a lot darker (I used to be a natural blonde but I have highlighted for years as it got darker and now, apparently my hair is no longer blonde at all!!), so I am not sure I can lighten- but have a consultation with my hair lady on Wednesday.... It is a bit hard to look at and quite a difference in terms of the contrast with my little tiny pony tail part--on my worst days I call it crap hair- (sorry!) but it can be really depressing-it is all so complicated but you all give me hope and strength to face it. We shall see what Ican figure out.
Yes the hair regrowth is a bit much- everywhere! My legs, totally have to be shaved twice a day if I want to go public late in the day and they are dangerous to be up against! Eyebrows are sticking straight out- not helpful, but I am grateful that they are there at all. I was terrible at getting the drawn-in ones quite right. I had to get a facial wax already - crazy! and am looking for a solution to the more private area issues with overgrowth. I guess lazer treatments make sense. Again, everything besides my head hair is raging -course and strong. It isn't safe to be around!
My head hair is coming back strong but not coarse, thankfully. It is soft and fun to touch. Feels like a baby's hair. Makes my other/old hair stick up, just as described by others. Funny sometimes. All confused.
My biggest problem has been my immune system. I got shingles a few weeks ago, and now have possible permanent damage to my nerve that runs across my shoulder and into my neck and down my arm, as far as I can tell. That is bearable as shingles itself was horrid and I am sooo grateful they are gone but they certainly left their mark. Sharp pains, some wierd feeling when I move my neck like there is a rod preventing me from turning it on that side, and a burning sensation when I wear clothes still. I think this would have been prevented with an immunization prior to chemo. I could be wrong. That is my complaint about that.
Next adventure was to go to my primary care doc to get immunized for flu, shingles (reoccurances do happen!!), pnuemonia, tetnus/whooping. They could not authorize shingles shot as I am a year too young- (REALLY???), but after the other three shots, I got a HUGE reaction/infection (on ten days of antibiotics now), including a swelled arm, hives, and the typical, but for some reason, worse case of muscle pain ever. The doc even said I should watch it carefully and go to the emergency room if it got any worse. AND on top of that, I actually GOT the flu and was in bed for four days!!!!
I am guessing this is an immune problem that is causing this. Has anyone else had any of this type of thing?? I am now taking some natural supplements again but my onc has told me (he is also a blood specialist) that my blood is perfectly fine.
Any thoughts?
Again- thank you to all of you. I so appreciate this link!!
0 -
DEBROX-
So sorry to hear about your negative nurse experience. It is just so wrong of her to do that, so unnecessary.
There were times I wondered if the expense and trouble were worth it when some people were telling me, "Just free yourself from your need for hair". But mostly, I have been grateful that I did it. And I have also heard that those who just go bald have to be careful with their new growth too.
Hope you can think of some good things to say to her if you see her again. I never like to let those things go unmatched somehwo when it could influence so many people.
Good seeing you here!
0 -
Good grief Elizabeth. Sorry to hear of all your problems and hope they all resolve soon. Sounds like we are all experiencing similar things with our new/old hair. I did trim my skinny ponytail in half which doesn't look any better than the long one but I think it gives the new hair time to catch up with the old. My down under hair is wild too as it is coming back in and way more of it than before and the leg hair is crazy....I used to only need to shave about once a week (prechemo) and now it is every few days. I noticed yesterday that my underarm hair is returning but only on the non-surgery arm. Wonder if it will every come back under the other one?
0 -
ArleneA: Took about 8 mos. for hair on the treatment underarm to regrow.
But it will. Enjoy it for now. The body and
It's responses are amazing and curious!
Sent from my iPhone, forgive the typos and
Brevity.0 -
Susan...You are amazing!!! That's great!
Yizbiata - I hope you get better girl! That's a lot of crap to deal with on top of everything you have been through! It makes sense your immune system is shot...chemo can do that to you. Do you taken any vitamins or supplements? Just curious. I have actually not been sick since getting diagnosed in December which is shocking given I had chemo and all too. As far as the hair, I have very long hair and I cut about 3 inches off the back 2 mo's ago (because it grew a ton during chemo). I was going to cut it to shoulder length to make it look thinner, but now I am glad I didn't. I do use one set of hair extensions daily and that makes it look like my pre-chemo hair. I just started using the blow dryer again and styling with a brush and that makes it look so much fuller and gives it so much more body than the air dried look I had before. So at this point, I am glad I did not cut it off and with the extensions it looks just like my real hair. Give it time and you may want to look into extensions. Get the human one's. I just clip them in/out easily. I even wear them when I have my hair in a ponytail.
As far as hair south of the border....yes it is coming in like mad! I just saw a deal on groupon for laser hair removal...I am treating myself on the bikini line so I don't have to deal with it anymore. It will be worth the $99. If you are not signed up for groupon, sign up and wait. They always have laser hair removal specials. If it works well, the legs are next. I think for both legs it was only $200. That is money well spent!!!!
0 -
Oh and I forgot to tell you all the funniest part of my day. I went to a new med onc since we moved out of state. So I was meeting with the nurse before he came in and reviewing everything with her and I mentioned when I finished chemo (May). She looked up at my hair and paused (my hair is down to the middle of my back)...didn't say anything. I caught her so I said "I used cold caps to save my hair". She just looked at my hair and said "so..........do you think they really work?". OK....if you haven't seen my recent photos, I have a full head of hair. I had to refrain from hurting her. I said calmly, "well, yes I do think they work since this is my hair". So the dr came in and he never commented on it.....I had my hair all styled and looking good today too! He did comment on the nice symmetry of my new breasts though....(figures). Oh well......obviously those at Northwestern don't do cold caps or believe in them. I find it frustrating that they almost don't even believe that it's my hair and they work. The med onc at U of Michigan told me to my face that cold caps don't work even after I told her it was my hair....her response was "well you are the only person they have worked on". So irritating!!! Just thought I would share that little "gem" from my day
Oh PCC's have a lot of work to do. 0
