Cold Caps Users Past and Present, to Save Hair
Comments
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sashasz3: Your first chemo is a terrific indicator of how you'll fare with subsequent ones. I too kept waiting for a truck to hit me; it never did. Of the menu of possible SEs, I had a few but sparingly, and into my second chemo I could see a pattern (i.e. a bit of diarrhea X number of days post chemo, a little backache a week after neulasta, etc.) - nothing that wasn't quickly and easily remedied with the meds/treatments I had at hand.
By the fourth chemo, I had fatigue in my quads, and though my RBC stayed normal throughout, I knew the red cells needed to be oxygenated. So, tough as it was, I kept up my exercise regime (swimming, hiking, tai chi, weight lifting). Hills and stairs were challenging at that point; often the start of a walk was difficult but became easier, because the movement and exercise had oxygenated my red cellsr. I remember one swim where every stroke took all my effort...but I was determined that, having not missed a single swim throughout chemo, I wasn't giving up! Before I knew it, I was back in the fast lane again.
One of the big, constant pieces of advice my nurses and docs gave me was KEEP MOVING, especially at the start of your chemo -- you'll keep yourself strong going into the next rounds and you'll be better able to fend off fatigue. (Do honor your tiredness, though, with good power naps as needed!)
Next week I'll be 6 months post-chemo (!I just did the math! wow!). I still get tired, and the exercise still helps refresh me. And I still work hard to claim my much-deserved power naps! I have to kind of fight for them, now; I did so well throughout my treatment, sometimes folks close to me forget that I'm still going through it and still recovering.
Okay, that was kind of a long answer from a long-range perspective. Just had a great haircut yesterday, though! Boy do I feel better!
Susan
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Thanks for the replies! Still hanging, Diarrhea has struck --some weakness- nothing unbearable---just pacing myself--I still am working out--not full tilt, but it makes me feel good to be able to hang --I agree if you can keep moving --I feel that gets this poisonous stuff out of you faster! Eating clean---Today will be a hair wash day with the se chi--can't wait I feel so gross! I wasn't up to the cold caps last night--): Going back to the office next week to give it a try---hope I can hang!
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I would like to do the cold caps when I do the TCH chemo treatment. My Hosp. has a freezer for it and is doing a trial. I still have to do the purchase myself so all info would be helpful. How much does it actually cost? I figured at least $2145 for 5 month (6 treatments every 3 weeks=4 1/2 mos =5 mos. of rentals at $429 a month plus 2% fee. How much is shipping? Any other costs involved? What credit cards work for this? I don't know if I will have to transport them back and forth to hosp. or will they get delivered there and stay in their freezer? I don't have a large freezer at home, do they stay in the coolers in between sessions, if the hosp. doesn't keep them? Has anyone in Long Island or Manhattan done this yet? Is dry ice the only cooling method? Where do you get it? Any advice will be appreciated. I will be staring treatment either after Xmas or after New Years. How long does it take for caps to arrive? How soon should I order them and do they come frozen or not and how long before you start treatment do you need to start the cooling process? What is temp in Farenhite (don't know if spelled it right)?
Nancy
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To the person who put together a booklet, please e-mail me and let me know how to get it. Thanks. Nancy
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HI keeppositive:
Your center has a freezer, you are one of the lucky ones! You will not have to wrestle with dry ice, coolers, etc. You will need to be able to put the caps in the freezer the night before (or else several hours before your infusion). They should be stored in a regular freezer when not in use, but you may be able to leave them at the center -- check. (If so, then you won't need to transport them to your sessions either. But that's not a big deal, really.) The cost is rental per cap by month; the cost will depend on the number of caps you need and how many months your infusion lasts. It could be that someone in your area is finishing up with caps -- Frank Fronda and the PCC folks will be able to advise you of this; it can save shipping charges. Several people in your area have done these; if you re-read these posts, look for someone named Drim - she's in Manhattan and was interviewed for the Good Morning America story (if you saw that).
Order them as soon as you can so you don't run into holiday shipping issues; they usually ship from Florida or LA if they're coming from the plant, but the PCC folks can advise you.
I'm envious of your freezer that goes cold enough! Most caps go on around -30C (mine was -32C; a little colder because I have thick, coarse, long hair). Everyone's protocol is a little different, and one of the forms you submit with your order is filled out by your oncology team -- Frank will use that info to customize your particular protocol (temp of cap, length of time (hours) post-chemo you should wear them, and number of caps you'll need).
Hope this helps a little!
Susan
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Hi keeppositive,
Sounds like you might be at my treatment center - Weill Cornell. If so they will let you leave your caps in the freezer as long as they continue to have the space. Right now there are 3 users and the freezer is big. I think one of those ladies is finishing up soon so you may be able to get them from her without ever having to take them home. I agree with Susan - get in touch with Frank right away.
As far as the cost, technically you will only need the caps for 4 months (last treatment is 15 weeks after 1st treatment) so I don't think it's going to cost as much as you think.
If you've been able to read through these boards you'll see that there is great success with TCH.
Please come back and let us know how you're doing and certainly feel free to PM me if you have any questions for me.
Good luck,
Ditah
P.S. Got my hair colored and blown out on Sunday at my regular place (i.e. non-organic) and my hair looks great. She said she could see a bunch of hairs that are shorter than most of my hair so she said the top part of my hair is thicker than the rest. I cannot see any of this for myself so I'm glad she can see it. My hair feels like it's 100% back to normal and it also seems like less hair than ever falls out each day (perhaps making up for the extra shedding during chemo). I went in for herceptin today and the nurse did a double take (you know how good the pros are at blowing hair straight). I can't believe it's been almost a year since diagnosis - crazy!
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Ditah~ So impressed!! (and a little selfishly envious) Yippee for you!!
Remind us how long you waited to color your hair -- what you did until then? I bought the SeaChi connditioner and will use when done.
And also, can someone let me know what is consider PFC.. is it the chemo day itself or when you would be getting the next cycle?
Not that you want a running update
but Day 33 and all seems OK. Shedding but not horribly. Trying to keep the anxiety in check.0 -
Lmflynn - I colored my hair about 2-1/2 months after my last chemo (I think PFC stands for post final chemo as in I'm 21 days PFC, etc.). I've said this a lot but it was a nightmare for those last couple of months. I had long gray roots and I was working full time so I used a variety of root touch ups (colormark and oscar blandi). The colormark faded (got absorbed) by the next day and the blandi stuff never dried although it looked pretty good. The first 2 times I colored my hair I went to an organic place. I doubt it made a difference but I wasn't willing to take a chance with the harsh stuff right off the bat (although my place useds minimal ammonia so they say).
I'm glad your shedding is not too bad. You will make it through.
Ditah
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I agree with Drim on the hair coloring~
I used organic the first two times also because I was worried about what regular hair color would do to my dried out hair...
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Hi everyone,
Thanks for the feedback. To Ditah: Yes, I am probably going to be doing this at Weill Cornell(N.Y.Hospital). I live in Long Island, but think I will stick with N.Y. Hosp. I had my surgery there, with Dr. Nowak. Dr. Anne Moore is the Oncologist I spoke with last week, and she will be the one I will work with. I would love to speak with you if you care to re this whole process--the Chemo/ the Herceptin/ The Cold Caps. I don't know how to get in touch other than on this site. If you care to speak, let me know. Congrats on finishing chemo and being able to color your hair!!!
When is the best time to call Frank in London?? How many hours difference is it from New York?
All my best to all of you.
Nancy
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Thanks Ladies! Appreciate the feedback -- seems like everyone is saying 2 1/2 months ~ better than the 12 weeks that Frank recommended - I'm sure he errs on the side of caution ~ and noone seems to have had bad results with your timeframe.
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sashasz3, I had AC x4 and T x 12, i had to have the shot after every AC and i never had any bone pain, good luck, i was very lucky as to have had no side effects, i pray the same for you..
love Chey
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HI everyone,
I called the # listed for the states(actually called both #'s) on the Penguin site last night. At first Frank picked up, so I thought I called England. We got cut off right away. I called again and got recording-woman with British accent- left a message, haven't heard anything. I called back again today, but still have heard nothing. Are those #'s actually in the states or just U.S.#'s routed to England? I am kind of anxious because I need to start Chemo in about 3 weeks. Also Drim(or Ditah) said someone at my hospital may be finishing up around now and would like to keep the caps if possible, so I will know they are here and wont have to worry about the Holiday mail situation. I have been trying to keep positive and not be overwhelmed by all this, but it is a job with all the things to keep track of and all the info floating around in my head. My husband seems more overwhelmed by it all. We were both shocked to find out about the chemo and Herceptin, because my BS never said anything, nor did he explain anything about HER2+. I found out myself after Radiologist Oncologist mentioned it as 1 of 2 or 3 reasons(invasive tumor /Grade 3 and HER2+ )that I coudn't get the MammoSite radiation therapy that the BS thought I would be able to get. When I called surgeon back he then said I should see a Med. Oncologist, who explained the TCH etc. I actually learned everything on-line and in these posts. The Onc. said there were hardly any side effects--maybe weight gain from the steroids/and fatigue, which I could avoid by being active and walking alot and exercise. Of course, that is not what I have learned here. I understand everyone is different and it depends on your own particular chemical makeup and your personal reactions to the drugs. However, I am thankful to you gals for all the info, because forewarned is forearmed!! If I don't get any symtoms or minor ones I will be thrilled(that's what I'm hoping for), but at least will know what is happening if that is not the case.
Keep Fighting and Winning!!! Nancy
P.S. I would like to private message you Drim, but I don't know how. I was able to answer those that private messaged me, but couldn't figure how to contact you.
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Keeppositive-To send a Private Message to someone, find one of their posts. Select their name-click on it. A new window will pop up. Up on the top right of page you can select 'Send Member a Private Message'. You can also go to the 'Search' tool that is up on the top right of any window. When new window pops up you will find a box where you can search by the member's name.0
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My daughter starts chemo, carbo and taxetere on Jan 5th - if the seromas allow- I have se tup for the cold caps but being an anxious type, I am concerned that I might not do it right - I have heard one woman say the caps were too cold and burned her scalp.
How do you monitor the temp in the coolers - is it really -32C or -25.6 F?
Has anyone used the reusable dry ice packs - www.dryicepacks.com?
How long before the ice melts?
Thanks - Mom
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motherofpatient,
I am using the cold caps currently. The temperature for each person is individualized by Frank based on the questionnaire that is filled out, patient's profile, hair type, chemo regimen. Typically the temp of the caps has be between -28 and -32 degrees C. It is easy to get the temperature of the packs once they are removed from the coolers on dry ice using an infrared thermometer that you can purchase on line. I have not used the reusable dry ice packs. I get dry ice from a local facility the day before the chemo as it lasts for 24-36 hours. Hope this helps.
J
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mother of patient-I would not recommend using the 'reusable dry ice packs'. They are not the same as 'dry ice'. Dry ice is frozen carbon dioxide. A block of dry ice has a surface temperature of -109.3 degrees Fahrenheit (-78.5 degrees Celsius). That is 78.5 degrees colder than frozen water! Dry ice does not melt. It has the feature of sublimation -- as it breaks down, it turns directly into carbon dioxide gas rather than a liquid.0
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Thanks for the kind words Chey!! Today was my Herceptin--tx--so for nothing--that was a piece of cake actually! The infusion girls were scannning my hair today--they told me by day 14 (next week) I should loss it all--I go back next Thursday for the next herceptin---gee I hope I can prove them wrong!! Any tips on the sea chi shampoo? I use a cap full gentley massage it and rinse---anybody do it any diffrently?? (cold water of course)
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You will prove them dead wrong, and they will eat their doubts. I hate that they dare to offer discouragement, when they are just plain ignorant.
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I totally agree with mtri1111~
I had one nurse who actually said after my last treatment "Well, you don't know how your hair will react down the line." What the heck does that mean?
Side note: The Sea Chi hair products are making my hair so much softer and not as dry. People have noticed, so my hair must have been quite a sight during chemo!
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My nurses all said the same things. They would tell me I haven't lost it "yet", but I will. By the end they were stunned. I was thrilled to prove them wrong. All through my herceptin they still commented on it. When they would access my port sometimes my hair would get in the way. They said that is never a problem with other patients.
Good luck to everyone using the caps. I think eventually it will be standard. We are all the pioneers.
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Hi everyone! I actually had one nurse say to me -- no matter what you do you are going to lose your hair, I've been doing this 30 years and everyone loses their hair. My sister, protecter helper that she is, said have you ever seen anyone use the cold caps? She of course said No. And my sister said, then you don't KNOW do you? She wasn't there at Tx#2, so next week for Tx#3 I hope I see her. I just love the passion all you past users have! It is a stressful experience when you are going through it and to have all the naysayers doesn't help -- so THANK YOU!
I'm at Day 35 -- was going to try to post pictures Day 1 at chemo with moleskin and Day 35 - Today -- shampoo day!!! But I cannot figure out how to post pictures.
sashasaz3~ I'm using the Pure shampoo and it is pretty light so don't water it down -- always in cold water and no scrubbing just lightly rubbing.
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Ok here goes
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OK ....Trying again to show the photos ~ Think my hair might look better at Day 35!!! 5 weeks.... still counting.
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Lmflynn~
I think your hair looks great!
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I'm just grateful I have hair!! (But TY!)
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mtri1111,
I totally agree with you. I am a physician myself and getting chemo treatment at a major center in Boston that is supposed to be so "well respected". They have no idea about the cold caps that I am using and offer no encouragement while I am going through it to try and keep my hair. They really offer no help either - sort of like the nursing staff etc can't be bothered. It really is ridiculous that they would treat patients this way who are in a compromised state as it is and are putting forth an effor that is very important to them to try to maintain their hair. I am hopeful that I will be able to prove them all wrong when it is all over.
J
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Thanks for the back up ladies!! If I am ever in a dark alley--I know who to call out!! Lmflynn--wow you look absoulutly fabulous!! I do pray I will have the same result in 35 days!! Thank you all for the encouragement--I am getting that "stepping on the ledge feeling"---now I get that statement! Your support keeps me sane!! Thanks again everyone!!!
Sharon
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Hi everyone,
To Lymflynn: Your hair looks great!
I have a question. I am due to start chemo and cold caps right after the 1st of Jan. Is it too late to color my hair before I start? I am due for a color this weekend (can do Sat. or Sun.), is it too late?too close to starting the the cold caps? Please let me know ASAP. Frank doesn't answer my calls. All I get is a recording and I leave my # and noone calls me back.
Thanks,
Nancy
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I didn't take the chance--I had my last color in october-tried a henna in november-NO COVERAGE!-started chemo dec 9--still doesn't look too bad--I use oscar blandi --color mark I have but haven't tried it yet--good luck with your choice!
Sharon
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Hi everyone! I actually had one nurse say to me -- no matter what you do you are going to lose your hair, I've been doing this 30 years and everyone loses their hair. My sister, protecter helper that she is, said have you ever seen anyone use the cold caps? She of course said No. And my sister said, then you don't KNOW do you? She wasn't there at Tx#2, so next week for Tx#3 I hope I see her. I just love the passion all you past users have! It is a stressful experience when you are going through it and to have all the naysayers doesn't help -- so THANK YOU!