Cold Caps Users Past and Present, to Save Hair
Comments
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Lordhelpme--I finished 4 months ago, I had 4 TC too. I lost all my lashes and half my brows about 5-6 weeks PFC. I was without them for a good 5 weeks and the past 6 weeks they have been growing. I used castor oil on them (youtube it) and now I'm using it just on the brows to help with the length and using Latisse on my lashes. They are only half the length they should be but I can now fit them in a lash curler so they ARE growing. Just having them fill in the eye area was huge so I didn't have to line them everyday. Other things that improve--any deep muscle pain, your flexibility, any lymphedema. I STILL don't have any taste though which sucks!!
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Pamela, thank you. I'm 2weeks out and have noticed my lashes almost gone. My brows are thinning but still there. Question....my eyes keep watering. When will that end. I get tired easily. I jump on my rebounder for about 10 mins(I lever lift my feet) to help with lympth drainage and that still tires me. Please tell me stamina returns
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Pamela 23- regarding loss of taste....I started gabapentin. I am having problems with nerve pain in my arm after surgery.
I think the gabapentin is helping with arm pain, and my loss of taste, and toe numbness too. My taste has returned and my feet are hot and a bit painful. I think hot and painful is nerve recovery. I was so numb in my toes before. It is also good for hot flashes. Mine have lessened but I can't say it's from the gaba since I'm still recovering from chemo.
Have to weigh the side effects with the benefits. Gabapentin (neurotonin) has some side effects like hunger weight gain (things taste really good!) blurry vision, and sleepy...those are all my side effects. I like the sleep! I did not sleep for months during chemo.
I'll take it short term and hope my arm recovers. I have terrible cording and nerve pain from lymph node removal.
Hug
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lordhelpmeto- my eyes watered all thru chemo. Not sure when it stopped but it has ended. This will pass.
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Lordhelpme--My eyes didn't water until a couple weeks after the last chemo and then I remembered someone had posted about that which made me realize it was the chemo. I think it lasted about 2 weeks and left as quickly as it came, but while it was there, it was really bothersome! I had a Kleenex with me all the time.
Elastogel--I just noticed you have liquid tamoxifen in your foot note, why liquid and regular?
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Lordhelpmetoo---- I didn't loose all of my eye brows and lashes, but they got very thin. I'm starting to see some growth. I'm 7 weeks PFC and my eyes watered all through chemo but have recently stopped. I'm slowly regaining my strength and stamina.
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MichCali, thank you for inspiring me. Did you have cytoxan and Taxotere
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Pamela, mine started around that time. Can't wear makeup because it'll run. But hoping like you, it'll go away as fast as it came. When did you start getting your energy back? I went shopping yesterday and did a couple of loads. Today I feel tired.
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Lordhelpme--I "worked out" throughout chemo--which would be running 1 minute and walking 2 min and running 1 min, etc on the treadmill. I could run 30 min straight until half way through chemo. So to go from that to barely a minute running was tough. I'm not a runner by any means, I just work out 4-5 days/week using treadmill, elliptical or step aerobics but just climbing stairs would get me winded. I had been taking an iron supplement for years but I bought a B Complex vitamin supplement since the production of red blood cells need B vitamins (specifically B6 & B12). I really felt that helped. Once your RBC count increases, that deep fatigue goes away. I did radiation 4 weeks after my last chemo and about a couple weeks into it, I really felt the most energetic, more like myself. So maybe at the 5-6 week mark? Of course they said radiation would cause fatigue between weeks 4-6 but I didn't notice because compared to the chemo fatigue, the radiation fatigue could be improved with a 1/2 hr nap and I'd get my second wind. I still take a nap in the afternoon for 1/2 hr and I'm 4 weeks past radiation.
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thank you Pamela! Much appreciated! It helps hearing from someone who's experienced what I'm going thru now. You're like a guide. I sent you a private medsage
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Pamela - so interesting that you mentioned flexibility. I noticed recently that I have lost some flexibility and didn't realize it was the chemo. I have been exercising daily but almost all walking so I thought I lost my flex because of that. Regarding the loss of taste, I'm not sure if sucking on ice cubes just before a meal will help you, but it helped me to a certain degree. My taste buds are much better now. Maybe not 100%, but most things taste good again.
Lordhelpme - watering eyes - your chemo started at the same time as mine and I also had TC. My eyes still water, but it's better now in that they don't burn nearly as much. Still a problem, but it's improved.
MichCali - my lashes are nearly gone and my brows are thinning so I hope that like you, I will see regrowth at 7 weeks (just 4 weeks away). Did you take Viviscal?
I will be 3 weeks PFC tomorrow!! Still shedding and losing lashes and brows, but I know I need to wait a few more weeks to see improvement. I started Viviscal a week ago so not nearly enough time, yet. I am dealing with lymphedema in my arm and wear a compression sleeve and glove. I will have to try using the rebounder this weekend - thanks for the idea, Lordhelpme. I have fluid retention in my legs that became an issue after my 3rd round and again now after my 4th round. I am told that it will go away. The lymphedema though is harder to fight with 23 lymph nodes gone.
I plan on shopping for an eyebrow pencil to draw on brows - my daughter looked at Ulta.com and showed me something that people had positively reviewed. I've got the Viviscal going, and the castor oil with rosemary to rub on my thin areas and brows. Dirty hair now especially with the castor oil so I may either try a different shampoo or a dry shampoo - but I'm still shedding some so I have to be careful. I did try the other day washing with slightly warmer water and then extra rinsing with cups of water - not much improvement (still using Accure).
I have family visiting a week from now and the highschool graduation - so I need to step up my appearance some.
I hope everyone is feeling hopeful on this march towards regaining good health.
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Hi ladies, I have a few questions, I would like to try to cold cap during my chemo. I am due to have a BMX with immediate DIEP scheduled on 5/22. I have not seen the oncologist yet but will after surgery. I imagine, 3 or so weeks after surgery when labs come back. My breast surgeon mentioned to me I will probably have to have chemo. I am multifocal in one breast one tumor 1.3 and the other 1 cm. IDC ER+ and PR+ HER2-. I am not sure what kind of chemo I am having. I was reading an earlier post and l think I am going to take Lovesgreenthings approach and just tell the MO I am cold capping and not to "ask permission".
Is all the work worth it? I would be doing this for me and my two sons ages 10 and 12. My youngest is very concerned about my hair. I would like to "feel in control" during this whole process. I am doing some research and think Penguin Cold Caps is the way to go. Approximately how much do you think this will cost? Thank you in advance for any help or advice you can give.
Monica
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hi kcmc, although I lost 50% of my hair and it's so thin now 11 weeks PFC where I am embarrassed to leave it down I still think it's worth it. I did it also cuz of my kids ages 13 and 2 ,didn't want them to see me as someone who's sick. Your shedding might not be this much or if you have thicker hair loosing 50% might still look ok. I had fine hair to begin with. Penguin charges I believe $580 per month they automatically withdraw from your bank account plus the $80 shipping fee to have them shipped to you. And you have to pay a deposit as well but that's given back once you've shipped back the caps. Good luck to you and hope you recover well
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KCMC - I decided to cold cap partially for my girls (ages 6 and 10) and partially for myself. I just couldn't imagine myself without any hair at all. I'm halfway through my chemo treatments (TCHP x6) and I estimate I've lost about 5-10% of my hair. Needless to say, I'm absolutely thrilled with the results so far. I'm actually using Arctic Cold Caps which is $379 per month (they do require a $379 refundable deposit). They include everything in the kit, including the moleskin, ear protectors, hair nets, thermometer, timer, wheeled cooler, among other things. The only thing I have to supply is the dry ice because my cancer center doesn't have a freezer that I can use for them. I highly recommend looking into that company. Their customer service has been extremely helpful as well. Personally, I think it's absolutely worth it. My onc even said that if I lose 80% of my hair that I should stick with it because my hair will grow in a lot faster. If you have to do chemo and you can afford to do it, I say go for it!
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Pamela23-I Did not know which tamoxifen to put on my stats. I have not even started with the tamoxifen yet. I just know I will be on it soon after my rads end in July. I tried to put some pre datedinfo in my stats. I'm sure it will just be a pill. How are you doing on it? Are you taking it yet? I've been worried about it a lot.
Hugs e
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I have been using cold caps since early March. Finished 4 treatments of THP last Friday. I probably lost 25 to 30% of my hair though no bald spots, and no need to wear a wig.
My selection decision (for cold caps) was based on the availability of nursing staff, though the vendor ended up not having any nurses for me. It was very disappointing. The support has also been less than satisfactory. I encourage you to ask a lot of questions before signing up with a vendor.
The process is labor intensive. I am lucky to have two family members with me to help me.
I am slated to start AC in 2 weeks. I reached out to another vendor to inquire about its success rate with AC/availability of support. Twice. Still haven't heard back.
If anyone has experience with AC, I would like to hear about it. Thanks.
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Thank you hopeful and soxfan! I think I am going to go ahead and do it. Like I said I don't have all the details yet, but I am going to really start doing my research. Hopeful even a 50% loss is better than a 100% loss. Sox fan - good luck with the rest of your chemo. Will be thinking about you both.
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Go Kale--I used baby shampoo all through chemo not realizing it was not sulfate free but it didn't matter either way with the shedding. It may have dried it out more but I would use a very hydrating macadamia oil based conditioner to counter act it. Point is, I didn't get any buildup so I'm wondering if you could use it as a clarifying shampoo every couple of shampoos to get rid of your Acure build up, I also now use Pantene Detox shampoo once in awhile to get all the colored spray and powder that builds up in my hair.
KCMC--My MO is the one who told me about the cold cap, so did my 2nd opinion oncologist. I told them that was one of the things that stressed me out, so not all doctors are against it. But yes, be proactive!! It is a lot of work for that 1 day and then you get weeks off. You bet it's worth it!! It would take years to get back. Even if you keep 50%, usually only you can tell. And the parts you see, you cover until something grows in which only takes a couple months after chemo. Penguin charges about 550 a month. Then there is the price of dry ice which can be up to $60-$80 if you can;t get it wholesale. We bought ours whole sale the 1st time but the dry ice facility was 1/2 hr away, so we started getting it from a grocery store which was .70/lb. We would get 60-80lbs. There are so many other issues that go with BC that no one told me about, I'm glad my looks aren't something I have to figure out how to "fix" .
Elastogel--I have my Rx for tamoxifen but I have to have a polyp removed on my uterus that was found when I requested a hystosonogram of my uterine lining so I could see a baseline before I start this med. I'm going in Monday for the procedure and will give myself 2 weeks to heal before I start. NOT looking forward to it. Don't want to deal with any more side effects. Still not liking the mild night sweats I have and I hear they'll get worse.
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pamela23... Great idea on the hystosonogram...did you just go to your obgyn or did MO arrange? I'm worried about your taste buds!
I went for radiation mapping today. Start in two weeks for 30 rounds and then tamoxifen. Last chemo was 4/28...no bottom bleeding this time!...and I'm still shedding considerably. Down to maybe 20% of my previously long and naturally wavy hair. I'm desperate to see some sprouts. I'm bald on top.
Anyone else have numb genitals? We are all girls here so I thought I would throw that out there while remaining as PG as possible. I didn't have it with the first three rounds but it's here now! I hope it goes away.
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Lordhelpmetoo--- yes I had 4 rounds of TC-- taxotere and cytoxan. I feel very lucky and blessed because I never felt nauseous. My oncologist gave me pre meds in my iv with something for nausea before the chemo started. Then I took a low dose steroid -- twice a day for 2 days after. Starting day 4 or 5 I got extremely fatigued. I slept a lot but never felt sick. I've noticed my eyes aren't watering as much anymore except if I walk outside. ( could be allergies).
Gokale4320---I did not take viviscal - but I'm thinking I should start. My hair is thin. I did hear today from someone who also did cold cap about a product called Revita Brow advanced. She bought it at a local, independent make up, skin care store. She told me it comes with a tinted brow gel for $50. I have started using castor oil.
KCMC--I used the penguin caps and definitely think it was worth it. Chemo days are a long day but then you'll have some weeks until the next one. Even though my hair is thin, I'm still glad I did it. If you didn't know me, you would just think I have thin hair.
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Hi Monica,
Welcome to the Save the Hair boards! Good thing you are looking into this early, it will help you make the right decision and be prepared as well. The advice from the ladies that went before me on this board really helped me a lot, kudos to them! Feel free to PM me for any questions as well. Agreed that this gives you a sense of control over what is happening to you during treatment. I feel it is very worthwhile to do this as looking your normal self is very helpful to mental health! Most of the complaints from the chemo boards it seems is about hair loss, head/eyebrows/lashes.
My MO and her partner were super skeptical but as each week goes by and they see me with hair and eyebrows (Essential Eyebrow Solutions) they are more impressed with cold capping and the eyebrow solution. I am VERY polite to everyone on infusion day and the nurses are all very helpful and accommodating as well. I feel like they are all rooting for me now. That has helped as it is a little distracting to have all the cold capping going on but we are as discreet and quiet as possible. They put me in a private room to do this, which is quite nice!!
Check out Rapunzel Project for statistics on cold capping. The PCC have the best rating for AC DD + Taxol. I lost the most so far on AC but I think it is at about 20% loss and Taxol is not hitting too hard yet. PCC are more moldable to the head for better contact than the elastogels from what I read. Plus, the kit they send has great straps for getting the caps on tight. I pay $500 a month to rent all of that, I think it was a special they ran in February. The dry ice is $40 each time, the place I go gives a break to cold cappers of $1 a pound. 40 pounds is more than enough for each session. You will stack the ice in the cooler into 3 sections, with the largest pieces on the bottom level where the "first" cap to be used will get very cold. It is costly to do this but honestly, no one can tell I am in chemo. No pity looks (!) and I am able to keep my health issue private, which is important to me. I saw someone yesterday who knows about my health but she said I look exactly the same as 3 months ago. I can go to my gym and yoga classes and just be me - not the person who is going through chemo. It is very freeing to be able to go out in public and not have to worry about how I look. I just blend in with everyone else. Yea!!
Do you have someone lined up to be your cold capper? I have the same person each time so we have a nice routine down. One tip is to get a kitchen timer and set it to go off 5 minutes before cap change. That gives us a head start if the caps are too cold (or not cold enough, but that rarely happens) - we can warm them up. Sometimes we end up sitting on them to warm them up!! Whatever works, right? I set my IPhone for the final time to change the cap. Learned the hard way to set up a double timer method.
Hope this helps you, let us know what you decide to do.
Anne
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I know a lot of people have posted what kind of shampoo they use and I just thought I'd throw out a recommendation. I've been using Avalon Organics Biotin B-Complex Thickening Shampoo and Conditioner. It's not expensive and both the shampoo and conditioner wash out easily. I also haven't noticed any build-up at all. During my days between washes, I use Acure dry shampoo, which I'm not in love with, but I feel like it's pretty gently on my hair. I've only lost about 5-10% of my hair and I'm halfway through chemo. Hopefully, I'll continue to have good results going forward.
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soxfan..I have been using the same stuff. Found it at Whole Foods and like it. I've lost about 75-80% of my hair but I blame the dignicap fit and not the shampoo. My scalp is in good shape which is a great thing since everyone can see it! I'm hoping the healthy scalp will help the grow in proc
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Hi everybody I am new in this forum. I am waiting for the results of the oncotype test to see if i am having chemo but for the size and grade of the lump i am pretty sure i will have it. So i read the posts and i am going to use the cold caps as i decided to continue working and nobody knows that i have BC only my family and 2 friends. And i still dont want nobody to know. So i have to make sure i can go to work and nobody notice anything. I will like to know which cold caps are the ones with best results for the price. And if some of you that i read had good results, loosing your hair, eyebrows and lashes will share like a list with the things i have to get when i start the chemo. Please i will definitely appreciate that. I was very depressed with all this situation. And i realized that when i am at work i dont think in this terrible illness. I read that you have the worst days. Day 3 and 5 after the chemo so i am not going to work from Wednesday until sunday and go back monday. Then 3 weeks. And the next one. So Do you think that will work? Thanks.
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Gokale, I'll be 3 weeks pfc too!! My taste buds are not quite back either. What a coincidence that we both had same treatment and started same date!
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Lowcountry--I arranged the sonohistogram with my GYN office myself. I have a PPO so don't need a referral but my GYN was on board with my request. Not sure if my genitals are numb, but the sensation is WAY low! Fro what I read, it doesn;t get much better and if you don't use it, you lose it. I've been following some of the forums about sex, getting mojos back, etc. This is VERY COMMON. Our libidos are shot so it's hard!
MichCali--my eyes always watered outside, I thought it was the cold weather back in Jan.
Soxfan--I use the same brand for face lotion. The Avalon Organics Wrinkle Therapy.
Vivian-- I am so sorry you are at one of the worst parts of the process. I pray your Oncotype score is below 18 and you don't have to worry about chemo. It was my score of 28 that led me down the chemo path. I had Stage 1, Grade 3 also. Please keep us posted. It's a very stressful time for you. I had chemo on Wednesdays and I agree, Friday I'd start feeling the worst and by Monday I was better. If you go down this road, there is a thread for newbies that list everything you need.
https://community.breastcancer.org/forum/69/topics...
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Hello,
New to this thread...I"m very likely to undergo a four dose TC starting in a few weeks, so I have some time to prepare for everything. I really want to Cold Cap but I'm getting tripped up on the helper side. All my friends work full time (except for the one who just had a baby, so she's busy). My parents are here in Chicago but my mother has hand dexterity issues and I'm not confident in my father handling the capping responsibilities. I am willing to PAY for an experienced capper in Chicago but can't seem to find one yet. Anyone have any ideas or recommendations? I'm planning on doing chemo at Northwestern and the MO made a vague reference to "we can help you with that" but I'd like to be more prepared. So also, anyone have experience in Chicago either at Northwestern or somewhere else? Any advice greatly appreciated!
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ChiAlli, a Chicago cold-capper from several years ago, whose screen name here is mdg, might be able to help. I don't know how often she checks in here but you could try sending her a private message. Her blog about cold capping was extremely helpful to me when I was first looking into it. Here is a link to her blog: http://breastcancerwontdefineme.blogspot.com/ If nothing else you could post a comment there.
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Chialli.Just as a note CTCA in Zion has the Dignicap system. That is where I go. All automated. They fit you and hook you up to the machine. When you need the bathroom they just unhook you and hook you back up. No cap changes, no helpers.
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Anne:
Thanks for all the feedback! I really appreciate it. My darling hubby is going to be my cold capper lol! He is retired military and is very anal, so I am lucky that way. I am printing out your message you wrote so I can start to gather up all the helpful tips. I have to keep it in perspective it's only a day, as MichCali said. I am so happy I found all you ladies!
Monica
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