Cold Caps Users Past and Present, to Save Hair

Lmflynn

I also had rash issues for about 3-4 weeks after PFC.....I took benedryl and that was all I needed... I don't like steroids of any kind.... Know they work for many but do not like long term effects.... I had really bad eye issues, watering, blurry vision, used replenish 4-5 times a day for 2-3 weeks, finally was able to wear my contacts....



Most things were for short periods relatively.... But hated chemo, my thin scaly hair, eyes, etc....i think what I want to convey is things do return to "good"..., in my opinion ...at a much shorter time frame than those that have to grow back their hair.... My last chemo day was Jan 13th. By July 4th....most things were "normal".... Including my hair .... I think because we..the Penguinistas... Feel " fine" and have most our hair... 6 months seems like a long time....but really it is sooo short ...our bodies, cells, emotions have been turned upside down...there is a huge light at the end of the tunnel....

FrancesC

Snoopy73- definitely from T. Initially onco said it must be something I ate but I have been on same diet since start of chemo. This rash started after TC #3. Just like how you describe. Nothing works except steroids but for a short while. I lather lots of calamine lotion on my arms and legs. It got worst after TC#5. I use ice to relieve the itch sometimes when it gets too unbearable. Onco now says it's from T.

mdg

My rash also appeared after tx #3.  Sarna lotion does help give a little relief.  THe vanicream is usually kept back by the pharmacist so have your DH ask the pharmacist for it.  Oh my heart goes out to you Snoopy.....I was miserable. 

Tiki

Soccergirl- I always used my curling iron. I do it gentle making sure I don't pull my hair.



Update: I am 12 weeks PFC. My shedding had slow down a lot. Yesterday, I didn't shade, I cried of happiness. Today, I shed maybe 10 strands. I think, I almost there.



My lashes are growing fast and I have a lot. (I never lost all my lashes)

My eye brows- I lost my brows on my 6-7 PFC. but grow back in 2 weeks.



Blessing to all

Tiki

Tiki

Lmflynn- Your hair was full and looking good in 6 months? Because is that the case maybe I don't need to get extensions. I will be 6 months in december 24.



Tiki

yizbieta

Snoopy73 Sounds like a chemo reaction- chemo rash is what they called it on me- but then for me, last chemo was June 24th and about two weeks ago, I developed shingles - which are very painful. It doesn't sound like you have shingles but it doesn't hurt to have them checked out.

I would guess it is chemo rash- and that just takes time to go away on its own is what they told me. The little red spots are very itchy and, as I have said they take a long time to go away. Crazy.

Not much help, I realize but at least you know you are not going nuts. Except you probably are, from the itching!

soccergirl

Tiki:  Did you have use low heat when curling your hair with a curling iron?  How often?  I am very tempted to style my hair a little more. 

Tiki

Soccergirl- I use it at low heat. Every time I go out, so almost every day. If I don't use it my hair will be a disaster and since I have thin hair now, with the curls looks a little bit full.

I talked to another lady that used PCC, and told me that she had use curling iron every day since she is a teacher and work during chemo. She send me pictures and she look good.



Tiki

Tiki

Yizbieta-how are you doing? We finish treatment on the same date June 24. My shedding is very low now. I think it will stop soon.



Tiki

FrancesC

Hi all, I have stopped chemo. Onco is ok for me to stop at 5. Now it's time to focus on my head:)

Snoopy73

Thank you all; I called my doc's office this morning, going in the afternoon. I startd using eucerine last night on my back and thighs, it really helps.. this morning, no  itch on my hands, but my back feels bumpy... will see what the NP says when i go this anoon.. will keep you posted.

On the hair front:-) I am so happy i used the caps, my hair is still intack, i shed but not much at all, i have alot of growth... i didnt get bald spots per se but kinda thin hair around my right ear... i actually had a dream last night that i woke up and the thin hair around my right ear has grown and is full hahaaha... i am not stressing much, jsut thanking God that i still have my hair, even though its boy short at the back and long at the front, the front is long enough for me to pull it back into a ponytail bun kinda style. I will try and take a picture and post.I am taking Silica. Any advise on other supplements/oil/hair products to help growth.

Another thing, my eye lashes are still intack but my eye brows have REALLY thinned alot!! i mean i have to pencil in inorder to get it to look full and nice, if i dont i feel like my face looks "naked". How long does it normally take for the brows to grow back?

Thanks penguinista sisters

Tiki

Snoopy- I lost my brows on 6-7 weeks PFC. They grow fast and quick. You will see in 2-3 weeks they are full again. If you have hives. They will go away on it own. But medication for itching and keep it on control its good. I didn't get hives from treatment. But I get it when I get in contact to feathers or coloring in foods, and I know how difficult they are, hot and itching. I usually tke benadril or my last option steroids. Believe they will go away.



Blessing to you,



Tiki

mdg

Once brows started growing they were back in about 2 weeks.  Lashes were about the same......I didn't lose lashes until about 7 or 8 weeks PFC and when they went...they all went within days.  Use lots of eyeliner...

ArleneA

Interesting that I didn't lose my brows (so far) and today I am 16 weeks PFC - WOW - I keep thinking it is less time...and my brows are darker than they were before chemo and thicker which is weird.  I am noticing one positive from chemo - I used to have horrible psoriasis around my ears and the nape of my neck and the chemo killed it and thus far it hasn't returned.

Off for Herceptin at the new center in Florida (versus NV) and hoping I love this center as much as NV Cancer Institute.

Arlene

Tiki

Arlene- I didn't know you were in Melbourne, Fl. I will send you a PM.



Tiki

LivCar

Did anyone have any tingling or mild pressure like pain after taxol or taxotere?  Some on my temples, sometimes on my knees. i'm 6 weeks PFC and i keep feeling little pains all over.  My onc had said it was taxol, but it's been 6 weeks.  Wondering if anyone else experienced this.

Lmflynn

@ Tiki- at 6 months hair was still a little thin looking, but was growing everywhere, about 3inches..at temples and nape ....but the biggest thing was the shedding stopped, I could wash with warm water, regular shampoo and use hair spray ....I was still only washing every 3 days...but 2 of those days my hair looked pretty good.



@LivCar- I had weird pains for a long time 3 months ..nothing lasted more than a day or two..so didn't really worry....my Onco kept saying to me how well I was doing ..that really it takes a year to recover from chemo.....I still think Penguinistas recover faster...the look good feel good mantra...I believe it!

ArleneA

Hi all:

Had Herceptin #7 at the new Cancer Center here in Melbourne and they couldn't believe I had been through chemo with all the hair I have.....sure made me feel good!  I explained about the cold caps (which they had never heard about) and hoping I can get them to suggest them to new patients.    I am going for a nice short hair cut within the next few weeks and get rid of this skinny little pony tail...hubby doesn't like it much.  Going to be interesting since I have very frizzy hair so we'll see how it looks. 

Tiki:  Just got your PM and will respond soon....definitely we should meet for lunch or something!

Arlene

mdg

Arlene...my ponytail is skinny too but I use hair extensions.  It looks great when I put them in.  I plan to get my hair cut once it stops shedding...yes, I am 5 mo's PFC and still shedding more than before chemo.  Once I can style my hair normal I will probably go for a cut.  For now, I am enjoying it long and just a little thicker with hair extensions.  I won't wear a ponytail without hair extensions these days.

Tiki

Mdg- I got my hair extensions today, it match my color. I feel much better. I was getting to the point that I feel a little bit unconfortable in public with my thin hair. I have a lot growing up but I know its going to the take a while.



Arlene- just let me know, it will be nice to talk in person with somebody that had used PCC.



TIKI

mdg

Tiki - doesn't one little section of hair clipped in make a huge difference?  I feel SO much better......and the colors were easy to match.  I love them. 

Tiki

Maria- I look like me again with only 3 clips of extension. 1 with 4 clips around my head, and 2 with only 1 clip on the sides. Well, when I saw myself looking pretty again, I cried. I just want to close this chapter of my life, but I still need to have my reconstruccion surgery in november, finish Herceptin in April, by that time I hope my hair is back to normal.

In general, I am feeling good. Working out every day, lost the 14 pounds that I gain during treatment. I feel strong and healthy.



Blessings to all,



Tiki

ArleneA

Morning all:

I checked out the hair extensions and couldn't find ones that matched my hair and concerned they might also pull on the delicate hair.

Fortunately, the majority of my shedding has stopped.  Still seeing some but it seems to be just the normal amount.  The bangs seem to be the worst.

Tiki:  I used the ElastoGels versus the PCCs but seems they worked as well as the PCCs.  Regardless of which one I have hair and so happy.

The one concern that I have is in starting the Arimidex which I'll begin in a few days as that one of the SE's listed is hair loss - oh great!!!!  Any of you ladies experience hair loss from these meds?

Another busy day of unpacking boxes and getting settled into the new house.

Arlene

ArleneA

I know this probably isn't the right blog for this but I got rid of all my tupperware and plastic storage containers and purchased BPA free containers; one set is glass and they are wonderful.  Amazing how many BPA free containers are now available!

mdg

Arelene...I moved last month. Good luck with the boxes. I am glad your shedding has stopped...mine has not and I finished chemo in May. I dont think it is going to stop.....it is emotionally draining. The hair extensions are the only way I feel good. Whether I use them or not I still shed.



Tiki...I am so glad you are looking good. Makes me smile!



Oh and I did also get bpa.free glass containers a few months ago. Now if it were easier to buy foods not in bpa cans.....here is a tip for canned tomatoes...Pomi has tomatoes in a carton imported from Italy. Fyi.....whole Foods and Meijer has them.

ArleneA

Maria:  Thanks for the tips on BPA free cans, etc.  As much as I can, I'm going to frozen/fresh foodss but some things you just can't get except in cans.

Your hair will stop shedding, I just know it!  I got to the point where I said "just take it" and be done with all this shedding and I really think that the new is pushing out the old hair.  Fortunately where mine thinned so much on the top (but I never lost it), it has filled in underneath and is starting to look full again as are the sides.  I haven't had short hair for so many years and this is just weird.  I'm going to an Aveda salon here since I think Aveda are pretty natural products.

I must quit taking box breaks.  My husband was here for a month before me and he put everything away in the kitchen and pantry so I'm taking everything out and redoing - he sure tried and I appreciate it so much.  He just couldn't deal with all the boxes.

Oh, btw, finally my downsouth hair is returning.  I know TMI but I didn't think it was ever going to return. 

DebRox

FYI:  To those with itchy scalp with buildup.  As per Ralston/Frank sugggestion a few threads ago, I added apple cider vinegar to my shampoo yesterday and it did a great job of cleaning my scalp. It is a little harsh on the hair, so I recommend a leave in conditioner on the hair sans scalp.

I too was experiencing heaving shedding PFC, but started washing more frequently about week 4 and the shedding is diminishing, it is still more than normal, but getting close.

Snoopy73

Hello my fellow penguinistas:-) I have a question to those who have completed chemo & caps - How long did it take for you to get your refund from MSC? I returned the caps last week to the depot in Michigan and they were recieved on friday, emailed the agent in MI to enquire abt the refund and she gave me a contact email of someone in MSC, i wrote to them but no respond.

Ang7

Hey Snoopy73~

If I remember correctly mine took a couple of weeks...

Tiki

Snoopy- I got my refund in about 2 weeks.



Tiki