Cold Caps Users Past and Present, to Save Hair

Kelli1970

Ang7-

Good plan, you don't want to go through everything you have only to lose your hair with the Anti-nausea medication.  Plus that Emend is expensive!

Have a Good Weekend and I hope you keep your nausea at bay...

Kelli

NewportLori

Hmmm, I used Emend for all 6 of my TC treatments.  I never had nausea but was unaware that it can cause hair loss.  My hair got so thin and brittle by the end that I did resort to wearing a wig. I'm glad that Frank Fronda is no longer recommening baby shampoo as that really dried my hair.

I have enough regrowth now that I can get a cute short cut, color it and go without a wig.  I am using Nioxin shampoo and conditioner which is for thinning hair.  I don't know if that is safe to use during chemo.

I would also recommend using Latisse throughout chemo on lashes and eyebrows.  I didn't start until after they had all fallen out.  Latisse helpeed my eyebrows come back quickly but eyelashes took a bit longer.

Congrats to all who have finished chemo!

Lori

NewportLori

Bummer for me - I may be getting more chemo.  I had 6 rounds of neoadjuvant TC which shrunk my huge tumor by about half.  At mx, 3 of my 4 SLN were positive.  Because I had residual disease including lymph nodes following chemo, it has been recommended that I get 4 cycles of either Adriamycin/Carboplatin (new consult) or Gemzar/Carboplatin (my original onc).  The oncs think that since part of my tumor was resistant to TC, I need more systemic treatment.

I haven't worked since May, so finances are tight.  Is there anyone in So Cal who has a set of caps to pass on so I can save on the shipping?  I'd like to save what I have, but it may not be feasible this time.

I will also be getting an axillary node dissection, rad tx and then years of an aromatase inhibitor.  Such fun this BC stuff is!

Best wishes to all,

Lori

Ang7

Oh Lori,

Know that I am thinking of you with prayers and good thoughts...

NoSunshine

Lori:

 I'm thinking of you and praying for you.  I hope someone close by can help you with sending the cold caps.  Hang in there!!

Carol

joansf

Hi Lori--it's Joan here...I think you may be the same Lori who shipped me my caps.  I am done on April 1.  Please PM me and maybe we can work something out.  I know you went to great effort and expense to get the caps to me, and I would be happy to return the favor.  We just need to go through Frank Fronda's channels on the paperwork, etc.

CoolBreeze

I just want to mention that you should talk to your onc about Latisse during chemo. I spoke to the Latisse rep and she said not to use it during chemo as no studies have been done about any interactions with chemo medications.

While any interaction is unlikely, I know it's not a chance we want to take without doctor approval. I have a latisee prescription and will be using it as soon as chemo is over- in one week! 

arbella

to all of you who have successfully sent in claims to insurance companies...i tried to do so and am now being asked for the following:

procedure code

diagnosis code

provider information(this may just be name etc)

tax identification

i have asked frank for this but havent heard back...was hoping someone here might help me??!!

thank you ...arbella

bridetobe

So I am starting chemo on Thurs and will be using the cold caps. A million thanks to mtri1111 for shipping them all the way to Canada! 

We did a trial run today with 20 lbs of dry ice using 4 cold caps... boy it was a trial and error process of getting the caps just the right temperature. I am just wondering how many pounds of dry ice you use for 14 caps? My helpers feel that I will need a least 80 lbs. But from what I've read it seems like a lot.   

By the way re: Latisse, I told my oncologist about this and he was not concerned about the side effects of putting them on my lashes or eyebrows during chemo, as long as I made sure not to put them in my eye, since the product is also used to treat glaucoma (using eye drops). 

Ang7

Hey bridetobe -

I will think of you on Thursday...

We used between 40-50 lbs. for 14 caps but my husband was good at getting them in the cooler.  We only used 1 very large cooler as I have heard others sometimes use 2.

cs718

Hi, Bride To Be:

For l4 caps we used one 52 gallon cooler to hold six caps and a 62 gallon cooler on wheels (both bought at Sears)  for the other 8 caps.  In the larger cooler two caps were not kept in the plastic bins, but just spread out.  We bought about 60 pounds of dry ice the day before ($60)  and hammered them a bit to fit half in each cooler; putting the caps in first and the dry ice on top of the caps since the cold moves downward.  I think some people don't use the plastic bins by the way at all.  I highly recommend taking an ativan before your treatment, you'll be less nervous.  You'll be fine; it's stressful getting it together the first time but you'll see it works fine as it's just for the day.  Any questions you can also write me a private message.  Also, my dear friend created a schedule we used each time to write in the time we changed each cap and to keep track of where we were.  If I can find it I'll post it on the website.  We found the caps typically needed to be taken out of the cooler l0 minutes before we needed to use them to get them to the right temperature since they're quite cold.  Good luck: it will be behind you soon.

joansf

Dear Bride--we had a similar setup...

2 50 gallon coolers with the caps divided evenly.  The caps were in commercial quality ziplock bags, opened out as flat as they would fit.

Dry ice came in 10 lb blocks, 10'X10" square.  I bought 8 pcs=80 lbs and layered them with the caps, so 40 lbs per cooler.  I found a commercial distributor online who delivered, and eventually I had him slice the squares into thinner pieces so I could make more layers.

Frank told me to put the caps on ice for three hours before the scheduled infusion--that helped a lot because everyone I spoke to seemed to time it differently, and timing was what gave me the most worry the first time. 

I was on taxol/herceptin for 12 weeks, so we had lots of time to fiddle with our set-up.  Towards the end, we just brought one cooler into the hospital and left the other in the car.  It just kept working out that the cap I wore home was #6 or 7 and it seemed unnecessary to have all 14 in tow.  I live near the hospital, so I was comfortable doing that.

The ativan really does help.  Also, one of the cap ladies suggested to me to take a pain pill--I took a vicodin each time (leftover from my lumpectomy).  I checked with the NP about it, and they were fine--she refilled the rx when I ran out. 

 Hang in there--it's sooo worth it!   

shadow2356

Dear BridetoBe - Your first chemo will be your longest one. They go slower in case you have an allergic reaction. You will need the most caps for this one. In subsequent chemos you won't need so many and you will find that the caps will get cold a second time if you need it. I never needed more than 8 to 10 caps after my first one. It is a lot easier because you will be able to do it with one cooler and less dry ice. I used about 40 pounds after the first one. I put the caps in the Hefty One Zip bags. It made them cool evenly because I could spread them flat. I layered them in the cooler with dry ice inbetween. I bought the dry ice in blocks. It does break up easily. I put it in garbage bags and dropped it over and over on cement and the dry ice turned into small nuggets. It worked great.

The cold caps are a little hard, but it really is worth it. I am finished now and I have a full head of hair. Frank Fronda is super helpful too.

Good luck to you!

bridetobe

Thanks everyone for the warm wishes. Not sure I'll ever feel prepared about this process but I do feel a bit more comfortable knowing many have gone through this before me. Not to mention that the cold caps also provide some sense of control in this very uncontrollable "situation".

NewBride

Hello to all of you and thanks for your help as I prepare for 4 rounounds of T/C.  I start on April 1.

bridetobe,  it looks like we will be on the same schedule.  My new husband is going to be my "Penguin helper".  He is very detail oriented (and a little anal retentive) so I think he will do a great job with it.

So ladies, here are my plans and materials.  Please chime in with your comments and suggestions.  Your experiences and opinions are so valuable to me.  I hope that I will be able to be as helpful to the women who follow.

I now have 14 Penguin Cold Caps.  I think that I will have have about 2 hours of premeds and 2 hours of T/C.  The first two caps go on in the last 40 minutes of premeds. Right?  Then the rest get changed out at 30 minute intervals through T/C and for 4 hours afterward.  I think that is what Frank told me.  I hope he e-mails a detailed schedule for me.

I got a 165 qt. 7 day Igloo cooler on big wheels at Grainger ($239).

I got an infrared themometer that goes down to -67F at Grainger ($40).

I have a dependable supply of dry ice.  It is available to me in 10lb blocks (@$1.25 per lb).  Actually they are more like slabs that measure 10" x 10" x 2" approx.  I guess I'll be removing each slab from its plastic and bashing it with a hammer.  I plan on getting 70 to 80 lbs. the night before each infusion and putting the caps on dry ice the night before too.

I have placed the caps in 2 1/2 gallon zip lock bags and will layer those between the dry ice chunks.

Do you think the caps will get cold enough and stay cold enough that way?

What kind of gloves did your helpers use while kneading the caps?  Were they able to place the caps on you without gloves?

How do the pantiliners work for ears?  Just cut the end to the appropriate size to cover the entire ear and stick the adhesive directly to your ear?  What about moleskin? And would it be a good idea to do all of that at home before I go to chemo?  I guess I could wear a hat to cover all of that stuff while I'm doing labs and stuff.

Thanks for the heads up on Emend.  I would have insisterd on it but I think I'll try to tough it out on Zofran and Compazine instead.  By the way, Diflucan (Fluconazole) also lists hair loss as a possible side effect.  That can be prescribed in the event of a fungal/yeast infection.  I was on it for 10 days after post MX antibiotics caused a fungal rash.  I did not, however, notice any hair loss.  I'm upping my intake of probiotics anyway so that I have a better chance of not getting thrush or any other fungal junk from chemo.

I have Aveda Shampure shampoo and conditioner.  I think I will continue to use them.  I will reduce the shampoo amount by 50% and will use conditioner only on the ends.  Do you think that will be okay?  I just can't see doing the baby shampoo thing.

Special thanks to Frank Fronda for expediting my caps to me and following up on my preparations via phone from the UK.  I wish all of my doctors showed that much care.

Thanks again to all of you ladies for your help.  I look forward to your comments.

cs718

New Bride:

I just finished 4 rounds of T/C with great success with the caps and I've worked throughout, including over an hour commute to work each way.  I'm sending you a private email message with a little more about my experience.  You need to know that your doctor may not let you bring your cooler into the infusion room; my cooler and one helper stayed in the small reception area outside and she brought the caps into the infusion room as she timed each one.  You should check that out before so you won't have any surprises on the first day. I had another friend stay in the infusion room with me for moral support and to help me concentrate through the first five minutes of each cap, which I personally found a little difficult; but that always wore off after 5 minutes and then I was fine.  The premeds for my T/C took only 40 minutes so I started right off with the caps, the first two at 20 minutes each.  just talk to the nurse when you get in to make sure; and you'll be wearing the caps for awhile after the treatment is over. I live close by so we drove home to finish.  My friend wore regular thick woolen gloves to work with everything and we put a towel over the top of the cooler to lay the caps on. you'll be able to split the chunks of dry ice down the center to make them less thick, using a chisel.  You'll do great.

cs718

New Bride: I couldn't figure out how to send the post on the private message board!  anyway, my doctor said staying active is the best thing to deal with the chemo and I do believe it. Some days I  had to push myself to commute, but i was always glad when I got to work.  My hair thinned most after the second treatment but I lost hardly any after the first and very little after the third; I just finished my fourth round and haven't washed my hair yet but I'm not concerned at all and it looks fine.  As everyone here says, it's important not to wash your hair for 3 days after your treatment.  Also, if you're getting a Neulasta injection after your treatment for your white blood cell boost, it will probably give you a backache a day later; make sure you take 2 advil as soon as you feel any discomfort and that should do the trick.  I waited too long the first time and that was a mistake.  Good luck!  you can also reach me at claudia.s723@gmail.com.

Ang7

I second the Ativan or Vicodin before your chemo as I was very anxious and these did help. 

As far as the moleskin, I would measure a piece on my forehead and cut it at home and then just put it on right before the cap at treatment time. (watch out because the first time I put it on my eyebrow and took some eyebrow off when I peeled the moleskin off.)  I did not try the pantiliners...

joansf

Dear New Bride--you're set!  One thing Frank Fronda told me that I'll pass along about timing the caps to the chemo infusion--as you said, the first two caps go on for 20 mins each.  Frank then said to have the third cap on for 10 mins before the infusion starts--he said that gives maximum cold.

I used the pantiliners on my ears, yes cut them down to fit, and my forehead (what a sight!--my friends/helpers thought this was hilarious!). I wish I kept track of the brand, but look for ones that are not contoured--just a straight strip with curved ends.

 Best, Joansf

cs718

Arbella:

You will need a prescription to submit from your doctor with the diagnosis code: l74.9.  My prescription also states "full hair prosthesis for chemo induced alopecia."  Frank should give you a bill with his tax identification number and provider information which as you guessed is his name address etc. I'm asking him for the same thing and am guessing the insurance company will ask him for more information but it's worth a shot.  There shouldn't be a need for a procedure number.  My insurance company would cover $l500 for a wig, unbelievable.  I bought one for $60 just in case, which I never needed but I'd sure like to get something towards the caps if possible. Good luck.

Claudia

shadow2356

Hello!! I know we all want to get the word out about the Penguin Cold Caps. There is a show called the doctors and they are looking for ideas for their show. I submitted the idea to talk about Penguin Cold Caps but people need to vote on it so it can win. I put it under women's health my user name on there is Juliannasmom.  Here is the link:

http://www.thedoctorstv.com/produce/produce_confirmation

Please vote so people can find out about the caps.

shadow2356

For some reason that link didn't work. Try this:

http://www.thedoctorstv.com/produce/vote

joansf

Hi--I just went on--the link is right and I found women's health but I can't find the idea--is there an index to search? joan

bridetobe

Shadow2356, I will definitely be voting as I feel there is practically no awareness of this anywhere.

Now, I just spoke to the onco nurse who informed me that the first infusion could take up to 4 hours (as you mentionned they go slow the first time). By my calculations, I will run out of my 14 caps if that happens. Has anyone run out of caps the first time around? If this does indeed happen, can I re-use the first ones if I refreeze them immediately after (they should have time to cool back down after 6-7 hours back in the dry ice)?

Kelli1970

bridetobe, yes you can refreeze them.  My last 3 treatments have been Taxol which has been 1 hour of premeds followed by a 3 hour infusion time for the Taxol.  Then I have to wear the PCC's for 5 hours after my treatments so the total wearing time is 9 hours!  My husband just puts them back on the dry ice and by the time I need them again they are ready.  I only have 14 caps so I know I reuse them.  Hope that helps.  Kelli

Jill1965

Just finished round #3 of TCH with the caps.  Here's a photo of me with my friends this weekend-- I'm the blonde.  Hair is hanging in there!

Ang7

Way to go Jill...

Your hair is looking great!

Finished my tx. on Thursday - I will try to post a photo soon.  Still having some tummy troubles...

Kelli1970

I finally finished my neoadjuvant chemo treatments of 4 x AC then 4 x Taxol yesterday.  I am so excited.  I must admit the side effects have been minimal with only bone pain for 2-3 days after the Neulasta shot.  Thankfully with the last treatment my oncologist said I do not need the Neulasta shot so I should feel ok this weekend.  I tell you I am feeling great today from the steroids!!  I used the Penguin Cold Caps so I have most of my hair.

They just scheduled my surgery for May 4th and I will find out if a will need radiation after they do a SNB at the time of surgery.

 I hope everyone has a Happy Easter!!  We all deserve it!!!

Take Care, Kelli

NoSunshine

Ang7:  Sorry to hear about the tummy troubles...I remember those all to well!  Please share a photo when you're up to it....since I'm not gracing you guys with my "lovely" photos anymore!  Hope you feel better soon.

Kelli1970:  Your hair looks great..gotta love those PCC's!!

Carol

cs718

Congratulations, Kelli;

For anyone taking the Neulasta: Take 2 advil liquigels as soon as you start feeling a little ache and you'll be done with the problem. I ignored it the first time and suffered a lot for 3 days, until the next time, after the onc nurse told me to take something as soon as I felt an ache.  what a difference!