Cold Caps Users Past and Present, to Save Hair
Comments
-
Hello Everyone:
To Howard: Congrats to you!! I am right behind you, my last chemo will be Thursday, the 21st. Can;t wait! Of course, I will then do 7wks/5x a wk of Rads and continue Herceptin for a year. But, still, getting thru with Chemo is a big thing--for you and me too!!
To those with big shedding, don't worry it will work out. If the shedding is in back and you have lots of hair, that part is probably not getting the cold cap enough, but if it isn't shedding on top and sides, it is definitely working, Hang on!! It is still better than being bald!! I don't think you shed as much with Penquin caps as you do with Elasto gels. Penquin's have had more research put into them. Frank is a fanatic about it. Still, the others will work too, just follow the way we do it with the Penquins.
Again, if there is anyone out there in New York, or even New Jersey or Conn. who will be starting chemo in May or even June, and you wamt to do Penquin Cold Caps, PM me and I will arrange to get you my 14 caps, so you don't have to wait for Frank to ship them. Of course, I will get Frank's okay and you will speak with him as well.
Keep Positive--it definitely has an impact!!!
Nancy
0 -
Hi All - I echo all that Nancy wrote. Stick with it...it is probably working, just need to hang in there. Truly having some hair is better than no hair. And as Maria said earlier, there are a lot (A LOT) of people who thin or bald hair everyday and they have no chemo. It is amazing to see all the different types of hair out there. I am so thankful that I have my greasy, gray rooted, messy hair!
It is weird to write this, but I am also almost done! I have my last chemo on April 25th! Not sure what will happen with the caps, since I just heard of a thirs (yeah) person that will be doing cold caps in Minneapolis. I will write to Frank to find out what is happening with the caps here.
Stay the course everyone...it is working...stay positive...you all are getting closer to the finish line!
Annie
0 -
Congratuations to all the graduates and near graduates! It is truly inspiring to know that you all have made it! From those first questioning posts, to the terrified first shed, to acceptance of "the new you". You are all amazing women and I celebrate you. Finishing chemo was great, but I found the three weeks after the last one where I didn't have to go get chemo, even more exciting. Get your thrills where you can I guess.
I'm three months post chemo now and I have finally quit shedding. After the initial couple of big sheds and thinning, it didn't look much worse after that, so keep the faith. I had a temp rinse put in two months post chemo and it did not affect the shed. I am now styling it a bit more and feeling better about how I look. It's not quite the old me, but I do have hair. I had checked into wigs before I started and was told I would need to wear it for about a year. Yikes! It has been so wonderful to look in the mirror and not see a chemo patient. I have definitely moved on with my life and it is great. Hang in there!
0 -
Hi Ladies, thanks for keeping me goIng! The sheddIng is starting subside and I noticed that the worst was all in one portion of my head where the hair was the thickest. So I am assuming that is where it didn't cool down enough. I appreciate all the encouragement and support.
0 -
Morning all (afternoon to the east coasters): My shedding continues and I can't even believe I can loose this much and still have any hair. Had to go to a smaller scruncy.
NMoss, I definitely am seeing the shedding more in one spot than others. Still no loss on the top which is great.
My weekly washing is today but I'm going to wait until Tuesday since I have appts this week and want it cleaner for those. Really, really nervous about washing too.
Tomorrow is only Day 21 for me so I think I'm an "early shedder"
Thanks for all the encouragement everyone and congrats to those who are almost finished.
Arlene
0 -
nmoss and ArleneA,
For my second treatment 4 days ago I really wet down the back of my hair and underneath where it is the thickest, I will let you know how that goes, my heavy shedding really starts about day 14 although I always have a continuous shed. 3 more sheds to go:)
0 -
Howard - congratulations on being done! Time for the penguin walk.
It seems that a lot of women will be doing the penguin graduation walk soon!
Colleen
0 -
Frank has said no hats or hairbands. i'm happy to see some of you were ok with these. i'm particularly worried about the summer. How will i play outside with the kids without a hat?? a day at the park, zoo, amusement park?? any advice gang?
0 -
I have been wearing headbands and a loose hat. I plan on wearing a light sun hat this summer too....I can't imagine the sun beating on my hair would be a better option......I guess it's a personal choice. I think everyone has to decide what will work best for them though he has made the recommendations.
0 -
Hi,
I am sorry it did not work for you. The main priority here I think we all need to keep in mind is getting rid of the cancer but I think it is great we have a chance to save our hair with this new technology. In fact I think it actually helps me to get thru the chemo because I am concentrating on the cold caps instead of just thinking about the infusion. Still, I am making a plan B (going to look at wigs) in case it doesn't work. My liver is a bit "sluggish" and values are off so not sure what impact will have due to metabolizing the chemo. . But I just had my second chemo TCH and no hair loss yet. I have a big question for those of you using dry ice and going to clinic infusion centers. . The clinic I go to only allows me to bring in a small ice chest into their infusion center so my friends basically have to run back and forth from the car in the garage to get other caps out of the other ice chests in my trunk. I had to do a lot of talking with my oncologist, nurse educators etc just to get them to allow that. This large 16 seat infusion patient clinic refused the big free ice chest stating there was no room even though the clinic is located in a large basement complex and said there was no room anywhere in the basement. This last time they were upset with me for having 2 of my volunteers with me at the same time in the little area I sit in which is seperated by a curtain from other patients. One volunteer was training the other but they said only one " visitor" could be with a patient in the infusion center. I explained one was training the other because my previously trained volunteer had gotten sick that morning and we didn't feel it would be prudent to have someone with a cold in the infusion center. At the end of the chemo infusion they had sent the social worker to come in and talk with me about issues like not having 2 staff in the infusion center at the same time I was not even aware of the one person only policy until this was happening. The general attitude has been very non supportive and negative. I have not asked them to do anything to help me other than asking them about the timing of the chemo administration and pre meds. Have others encountereed resistance and negativity from nurses and managers regarding use of the cold caps? I did give research articles on the success of the cold caps to both the nurse manager and oncologist but I do not believe that any of the staff nurses have been told anything. Most of them I think just believe they don't work. How have you educated the clinic nurses and have they generally been resistive or supportive? It is rather upsetting to me and I find it particularly ironic since I am an RN as well. I know any change is difficult and perhaps they are worried that their routine will be disrupted. How are all of you dealing with the nursing staff regarding using the cold caps. Ideas welcomed.
0 -
I am sorry the staff is so unsupportive about you using cold caps. I can't believe they won't allow you a cooler....that is rediculous. I would talk to the doctor and remind them that they work for you and if you want to save your hair you should have a right to do that. It's not like you are "just bringing people with you" to disrupt things...they are helping you with your care and treatment. When I go to my office I bring my husband and someone else EVERY TIME and no one says a word. I don't have other suggestions but I wanted you to know that many nurses and doctors are uneducated and don't think cold caps work. I go to a med onc office that has a freezer and has the cold caps there for me to use. When my doc mentioned cold caps to me she said they have a 50% success rate (which is completly wrong). When I told the chemo nurse I was going to do them she said "I just want you to be prepared that these don't really work for everyone.....". I was there the other day for a neulasta shot and the nurse could not believe it was my hair. I told her I was doing cold caps and she said "I don't know much about them at all....so do they work? We don't get any information on them or education on them...". This is an office that actually has a freezer and cold caps right there!!! It drives me nuts! I told my doc I am going to be the office's patient advocate for cold caps. I will be the person a patient can call if they want to know about my experience using them. There is so little education on them which is unfortuate. If I had not read about them here, I probably would not be doing them. My doc mentioned them but hardly and did not explain much and did not let me think they were that effective. The chemo nurses made me think that it was so "intolerable" and that most patients just give up. Quite honestly I am sitting here after 3 rounds of TC with a full head of hair and it has not been intolerable for me. The most intolerable part is icing my fingers and toes during taxotere....that is harder than wearing a cold cap for 7 hours!
0 -
Hi SerenityWisdom Sorry to hear about your onc's non cooperation. Most people are afraid of they don't know. I had the same issue and I let my onc know that there were other infusion centers that were more than happy to accept me and my cold caps and that were anxious to see the results. It depends on the onc. My onc owns his infusion center so in the end he was happy to keep me, my caps and my co pays. He is a great doctor but ultimately with chemo, the protocol is the protocol and you can have treatment anywhere. Also, I am using a 65 lb cooler and it is on wheels so t's easy to cart and store. It is square like a cube not rectangular and long. Its made by Igloo.
0 -
serenitywisdom: This is important: Your care team is there to support YOU. You have a choice as to where you have your treatments (believe me, they jockey for the business of us cancer patients!). If you are not accommodated, you should immediately ask to speak to the Patient Advocate. (This will send chills up their spine, trust me.) You have a right to your treatment, including the portions YOU bring to it, which includes cold caps, or your religion, or clicking your heels three times, or smudging the room -- whatever. As you know from your nursing, they are obligated to recognize your personal wishes as part of your treatment plan, which for you includes PCCs. (I work in a hospital, and at one point was the patient advocate, and I too know the ropes.) You can also do positive things to model the appropriate behavior for them: offer to do an in-service, offer educational material, don't shy away from your own credentials. There have been several RN's/PCC users on this list who have been able to pioneer this technique for their colleagues. A good nurse is one who is perpetually learning new skills and treatments, and in oncology, absolutely PCCs are the next new trend. If your nurses don't have a thirst for learning and improving, that's a problem for your cancer center and you are in a valuable position to make noise about it -- for yourself, and for the thousands of patients who sadly will follow you.
For me, I was the first person at my cancer center going through this treatment. Luckily, my social worker had another patient (at another hospital) who had just successfully completed PCC treatment, and she was enthusiastically on board, while everyone else was dubious if accommodating (at the start)(they were all enthusiastic by the time I was done). We worked out that I could keep one cooler near my infusion room, and the others waited in the lobby and my helper trekked back and forth, retrieving caps, swapping, checking temps, etc. He was a kind of hero among the nurses, by the time it was done: I'm not exaggerating when I say there's a special place in heaven or nirvana for the PCC helpers, right, ladies? They work their butts off in this! We also made this a positive experience: no glum chemo patient was I, the nurses really fed off my enthusiasm, as did the other patients (I always brought something nice for whoever shared my infusion room with me, but they were always so interested in what was going on, I ended up making new friends).
I don't know where you are located, but I'm in the SF Bay Area (East Bay). The fact that UCSF was just entering PCCs in clinical trial had some momentum within the local physician community, esp. given that my cancer center (Alta Bates) is competitive with UCSF. My Rad Onc has asked me to speak at tumor board (and my use of PCCs came up there more than once), and to me it's as important as coaching new PCC users.
Mdg: You should also have a talk with the patient advocate at your center! Proper health education is not getting out to the clinical nursing staff at your center, so pressure from outside the department (as well as from patients like you) will help make that happen. If your patient advocate won't support you in this, ask for the number for The Joint Commission.
What I wouldn't have given to have a freezer at my cancer center! Tomorrow is the one-year anniversary of the date I had my first chemo. A year ago tonight, I was busy hauling and packing dry ice, checking temps, organizing my travel bag for chemo, and having one last very spicy burrito for dinner :-) because I knew it'd be a while before I could have spices again.....I had a big old plastic box of meds in the bathroom -- I was ready for EVERY possible SE. I ended up using a box of claritin and a couple of compazine and immodium, never touched the rest, gave them to a friend who was diagnosed shortly after I was.
One year later, the bits of hair I lost (nape, above one ear) are growing back ridiculously fast and I have one "wing" of hair above my right ear -- when I clip my hair up it looks like Bozo! There was a day I'd have freaked, now it's a joy to me that I kept my hair, that what I lost is regrowing even if it sticks out in places, and it's a joy that I'm alive and can find laughter in the world.
p.s. I agree with mdg, icing my toes and fingers was uber-harder than icing my head. I still take l-glutamine and still have occasional pangs of neuropathy, but that's a good excuse to make an appointment with my accupuncturist.
My blood gets drawn this week for my next 3-month followup, wish me luck!
Susan
p.s2: Serenitywisdom: I also had a backup plan. Every week through 3 infusions, my doctor kept warning me that my hair was going to fall out "this week". And of course, every patient she's ever had for 25 years has had exactly that thing happen, I'm the first time she's seen otherwise, so her caution was understandable. My mom and I visited The Wig Lady, who loved the idea of PCCs, and who had something standing by for me just in case. She was thrilled to send it back unused. You will too!
0 -
Wow ladies, awesome responses. I guess I'm lucky that my center is accommodating us so nicely and has given us one of the big rooms for all our 'stuff'. Mos of the nurses have seen other cold cap users come through and those who haven't are very curious so I'm hoping mine work so that the new ones can experience the caps.
Had my center not been agreeable to my using the cold caps, I'd have move on to another center.
Good luck!
Arlene
0 -
Thank you all for the encouraging and inspiring responses. Perhaps it is harder to institute a new treatment at a large clinic with many different departments. My oncologist MD was neutral to cold caps, but supportive and didn't know much about it, but said if I want to try, go ahead, my plastic surgeon was enthusiastic, but sadly it has been the nurse managers and educators who work directly in the infusion center who have been most negative. Perhaps there is concern that their routine will be interrupted or they will be asked to do more and concern that other patients will want to try. I am the first one to do this at this major center. This concern has not been voiced but I do wonder. There is nothing wrong with educating others. I will offer them an inservice and continue to advocate. The last thing we need during chemotherapy is additional stress from staff. In a recent JAMA research article it stated " Modern medicine has focused so intently on fighting disease that it has overlooked a natural ally in the battle-the patient's personal mental management of the stresses associated with cancer." Mobilizing and receiving social support from our wonderful helpers should not be trivialized and patients told that they can only have "one visitor" at a time. Our helpers are not just visitors. Hopefully it is just a matter of the nurses not understanding the role of our helpers and they will understand that with more education. Other ideas or thoughts welcommed on getting hospital/clinic staff to be more receptive of PCC's.
0 -
Sebm: I plan on being an edcuator for PCC. I actually have a degree in Health Education and my full time job is as a surgical sales rep so I am use to doing in-services to educate staff on my work products all the time. I plan on bringing in some snacks at lunch one day (when I am done with chemo with my hair) and asking if I can hang out in the lounge to talk to staff during lunch. I am also going to print up some business cards that just have my name and number on them with a short message about keeping hair through chemo with PCC's so they can give the cards out to patients interested in learning about them. There are two more offices in the same medical building that also offer caps and freezers so I will hit them up too and see if they would be up for some education. My doc also said I should get involved with the integrative medicine group and see if I can be a speaker for the cancer patients on this. I plan to get this going in the next few weeks but I also am planning to return to work full time next month so I don't know how much time I can devote to this. I am going to try though!
0 -
Good Day All:
To mdg: Good for you! We need people to get the word out. I can't belive that in a center with multiple freezers and caps, everyone doesn't know all about the caps. Imagine how it is in a center where they haven't heard about cold caps at all!!!
To all you new penquinistas, please, please hang on, the shedding is normal and the caps will work, just trudge forward and keep a positive attitude about your treatment and its outcome (That you will be cured!!)and the cold caps and their outcome(You will save your hair!!!).
I also agree that icing my fingers and especiaslly my toes during Taxotere was far worse than the Cold Caps, which for me was like a bad ice cream freeze for a few minutes. The iced fingers and toes was bad for the whole hour!
I don't know why you couldn't have spices during chemo, because that was what made it possible to eat food during the 1st 2 weeks after chemo #3,4,5 and probably the upcoming #6. For #1 and #2, I had no noticeable side effects other than constipation and or diarrhea or both, but with 3,4 and 5 I got the bad taste and the pins and needles in my fingers and especially in my toes. With each succeeding treatment, the side effects got a little bit more and more, but nothing I couldn't tolerate with some meds and spices on my food and a little sugar in my coffee and on fruit and also lots of sucking candies-mostly mints and cinnamon and werthemers(don't know how they spell it) and of course some dark chocolate and a little chocolate ice cream for good measure. I actually gained 5 pounds, but will lose them right after chemo, when I will go back to my regular healthy eating, sans candy, sugar, salt, no white stuff, eating whole grains, nuts and fresh fruits and lots of veggies-fresh and cooked, fish and poultry and very little red meat and just a little dark chocolate and a little chocolate ice cream every once in a while.
I recently spoke with a family friend,who is an Oncologist at Memorial Sloane Kettering Hospital and he is working on a cookbook for oncology patients and he says, spices are great for chemo patients and to try ones you have never tried before and spicier ones, because you may be able to tolerate them better.
Well Keep Positive and Keep Laughing!!
Nancy
0 -
Hello
I am starting Chemo in May and plan to use the cold cap. I am going to get my hair permanantly straightened, which also makes it feel thinner as i have very thick and lots of shoulder length hair. I am hoping this will help the cold cap work better. But will also make me feel better as i always like to straighten and blow dry my hair as it is very unruly. It does seem petty talking about how i am worried about my hair when i am getting life saving treatment. But i know if i can keep as much hair as possible i will cope so much better. If anyone has any tips on making the cold cap more comfortable that would be very useful. I was told your forehead gets cold and painful and to take a flannel to wear just on that part of your head to help with the coldness. I am very grateful of the comments i have read so far, i am also terrified i won't cope with the treatment and side effects. But it helps so much reading the good and not so good in the discussion rooms. I know we are all different. I wish all of you good luck with your treatment and look forward to reading your comments over the next 6months .
0 -
I did not know about not wearing a hat, but that makes sense now. I guess we have to use 30+ sun block, I do have some of that. I had been putting a hat on to keep out the sun's rays. I would worry a bit about the sun shining on thinned scalp areas though......hmmmmm I live by the beach....maybe an umbrella instead when I walk on the beach??
0 -
Sporty: For me I use the CVS brand Mole Skin PAD (it's really thick) on my forehead and temple areas. I use some mini pads cut to shape on my ears. I take Ativan before chemo and get ativan and benedryl in my pre-meds. I also take tylenol before chemo. Doing all of that the caps are not bad. I was SO worried about being able to tolerate the caps because normally I am always cold and HATE being cold. It has not been a real issue. The first cap is a bit cool but that passes. You get use to it and it's not that bad. I did video my first cap going on the first time so people could see how well I tolerated it and my reaction. PM your email address if you want the short clip to view so you can see for yourself that it's not that bad. I also have my moleskin/maxi-pad accessories on so you can see how nice I look too! (LOL!). You can do this! I am 75% done with hair!
0 -
There is a lot of good information and good reminders on this blog0 thanks everyone for posting helpful things and for keeping up- congratulations to those who are nearly done and completely done YAY! I wll be halfway done with the six treatments on Friday, the 22nd of April. I will be celebrating that- after the bone pain goes away, 6 or so days after the nuelesta shot!
.I have long blonde hair- and after 2 treatments and using the PCCs, I have about 1/3 the hair I used to have. I am calling it baby hair, but it is still a lot of hair to people who didn't know me before. I was telling my sig other that I was afraid it wasn't working because the shedding was so bad-I collect it and document it in plastic bags so I can tell the days it was bad and compare and all that. He told me it looked fine, and that there were no bald spots (well, not many- I have one at my right forehead area but it covers well). I wasn't combing it everyday so it got matted like dred locks for a couple of days. I had to pay my hairdresser to comb it out. I lost a LOT of hair then. It was sickening, but I had thought I would have to cut if off. I hadn't realized it, I was trying so hard not to disturb it. It took two separate combings of about two hours each to get it untangled- very slowly and still lots of hair loss.
I somehow missed reading about how much hair gets lost during this process!! I also got scalp sores, but not sure why. They are starting to go away but very annoying and itchy. Hard to keep my hands off. Though I am not working during treatment, I thought I had head lice there for a while (I am a teacher, and while working, this could happen!!!), and of course, I stressed about that because treatment for that would make me bald, as it is very harsh.
I love how people are saying, 'look around and see other people's hair'- it is true, I see that too. Some have good hair, thick and lucious 'run your fingers through it' hair (and yes, I get HAIR ENVY very badly!!), and some have really bad hair. I feel like I am somewhere in the middle with this now. I did not think it was working, and when it is bad, I wonder if it is worth it, but after all, I still have a lot of hair. It is amazing, really.
Again, I do wish I had read about the shedding (double handfuls at times), the AMOUNT of shedding and how scary it is because it may have saved a lot of stress. For now, at least today, I have kind of given up on being so stressed; I am now trying to be more about keeping up the PCC treatment until it truly doesn't work, and that would be when I am almost bald, I guess. Baby hair is fine for now.
Good luck to everyone.
0 -
Loved this post- about being a positive advocate and offering education for others in the onc office- also about bringing something for the people who share the room with you....good idea- thank you! It is a huge ordeal and the helpers are angels. I had a bad experience with the first person who had promised entire coverage of the treatment cycle and then changed her mind- but I think it will be okay because my sister is sacrificing her vacation time and my sig other is helping too. It is a lot of work...I need some ideas of how to thank my helpers (I was paying the other person- not much, but a little). In the film from Frank, they make it look so easy- but things get pretty frantic in the infusion room and then there are the looks from some of the other nurses too- though my nurses have so far been really nice about it. I like the idea of keeping a wig in mind as a back up- what is the worst that can happen? I lose all my hair. I had to relax about this finally. I was going crazy.
Sometimes, I feel so guilty that I want hair this badly but my sister and sig other think it is the right thing to do also, so far (they have only done it once so we will see!!)
0 -
Sporty13- for the forehead, I use moleskin and cut it to the shape of my hairline there. It has a sitcky side, but I dont pull the entire sticky covering off because it hurts to pull off the moleskin after treatment. I just allow a little sticky at the top to keep it on my forehead. It works really well and the Dr Scholls package comes with more than one moleskin in it so you have enough, probably for many treatments. The used moleskin is the template for the next one, important because getting the shape of your forehead and cutting it just right is a pain. Good luck!! It is quite a journey but hang in there!
0 -
Hi yizbeita - sounds like you are making it through! Keep at it...you will do great...and no one will notice if you shed!
I wanted to comment on the matting of the hair - I so agree that A LOT of hair comes out if your hair gets tangled. What I did was try the new organic shampoos and conditioners PRIOR to beginning chemo to see if my hair was tangled or not. One of the highly touted conditioners on this site left my hair so tangled that I could not comb through it. I tried another and it worked. The comb out from shampooing is not an issue. As I sit, I have a head of wet hair, after 7 days of not washing! I hardly have to comb through it, because the conditioner makes it so smooth.
Everyone has their suggestions/methods. Hope this helps!
Annie
0 -
yizbeita: I never looked at wigs...don't plan to! I am keeping my hair and won't need it! I decided I wasn't even going to go there..........
0 -
Annie: I'm sure you've told us, but what hair products do you use. Yesterday was 7 days for me and I'm so afraid to wash since I've been loosing handfuls of hair. I'm using Organics which I bought at CVS and seems to work fine but always looking for others.
Hats: I have to wear a cap when I am out biking or my hair would get so tangled from the wind.
Thanks, Arlene
0 -
I don't know if this will work or not...but I am trying to add my photos so you can see my hair.
Photo #1 - Pre chemo with normal hair styling (I blow dry it straight)
<img src
Photo #2 - 46 days after starting chemo...no real styling just washed and frizzed....(ICK!!!)
I have done 3 cycles of taxotere and cytoxan and have only 1 more to go. I have about 3/4" of NEW hair growth at the roots (yes, dark and gray roots) since I lasted colored my hair which was about 11 days prior to starting chemo (started chemo 3/3). My frizzy hair is not my favorite look so I wear it pulled back a lot but put it down for the photo so you can see it.
0 -
0
-
Maria: The first one came through just fine.
0 -
Maria - your pictures are GREAT! Your hair looks wonderful!!!
Arlene - I am using Intelligent Nutrients, which is a new brand by the guy who started Aveda. It works for me...but may not work for everyone. The one thing that has been repeated is to NOT use baby shampoo. Too harsh on the head.
0
