Cold Caps Users Past and Present, to Save Hair
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WTG MammaFelice!!!! You are almost done!!! Doing a "hair happy dance" for you!!!
Amelia, I was told the same statistics but I still had to go for it! I know how you feel because I had the HARDEST time thinking about losing my hair and thought it must have been "vanity." But, it is more along the lines of wanting to keep as much "normality" as possible during such an upheaval in your life. Cancer interrupts normalcy. Keeping my hair has helped me immensely so I would urge you to "go for it!" :-)
Shlomit~Good luck on your first infusion!
Amelia~my Dignicap buddy, good idea on weighting down the top of the cap! Wake Forest puts bean bags in between the two caps but I still had some thinning up there..but, I can cover it up pretty well!
AngiePie~that is frustrating to make it all the way through chemo and then have shedding. I am also wondering if this could be a delay reaction from surgery? I remember that 4-6 months past two of my c-sections (had to have general anesthesia-because of an autoimmune condition) I shed and was told this was my body's reaction to anesthesia/surgery.
Well girls, my last TC is this Wednesday~I just want to get it in my rearview mirror!
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Good morning ladies! Had a bit of a steroid crash yesterday, but making it over that hump and determined to start bouncing back! Thanks for all the love ladies! So uplifting to have you cheering me on! Lizabeth-- you rock that Wednesday chemo girlfriend!! Ring that bell like you just won 10 rounds against Ali cause you DiD IT! Can't wait for you to share pic!
Diane-- dcbooklover-- just wanting to make sure you don't have any other questions for us re CCing. You can look through the posts on this thread and gather all sorts of valuable info, but we are here and happy to help you make any capping plans.
Schlomit-- you mentioned ice packs during Taxotere. I have been icing my fingers and toes as a precaution during Taxotere, but simply using styrofoam cups with ice for my fingers (a3rd cup with chips to put in my mouth), and some odd red ziplock bag that the nurses had and gave me to use. Bag had a zipped area to put ice and a pouch to slide my foot in and bend ice over my toes. It seems to be working thus far. Ask the nurses since they have a ton of experience and are so willing to help. Good luck with 1st infusion!
Amelia-- did you start chemo? Which regimen did you end up going with? Glad to hear Dignicap is available to you. When did you start and when is your next one? Hang in there and believe that the medicines are eradicating every bad cell from your body!
PatinMN-- Yes, you broke my stats code! I was originally diagnosed with a small tumor that was removed by lumpectomy , but due to concerns over previous rads received, I moved forward with a BMX. BMX pathology found bigger lump and nodes....all which had gone undetected! I'm very thankful for my BMX for what it unveiled to us!
As my friend quoted me "Come what may...and Love it!" And now I am nearing the end of my chemo-- whew-- what a ride! Keep positive everyone-- it feeds the soul!
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MamaFelice, wow, that was a big miss! Has anyone explained how that happened? I’m so glad that you chose the mastectomy
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Lizbeth,
I believe I read that you are using Dignicap. Is there/was there a problem with the fit of the cap?
I am considering using the Dignicap and I would like to know more about it from people who have used it.
Thank you! And, of course, GOOD LUCK!0 -
MamaFelice, yes! Had an appointment this afternoon w/my oncologist and a genetic counselor in their practice (getting tested for the BRCA mutation). I asked about the cryotherapy for the fingernails and toenails, and she (my oncologist) definitely supported it (for the taxotere portion of the infustion). Making plans for the big chill. Oh, I so can't wait for March 30 (my 4th/final treatment)!
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NLH~I read that Dignicap is re-desigining the cap. The concern is having good contact on top. My nurses at Wake Forest put bean bags on top in-between the two caps. I had some shedding but I would estimate that I still have 90% of my hair. Having said this, I'd recommend Dignicap still. Just make sure you get a good fit with the caps. I'm pretty happy with the results.
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I used dignicap -- and I would do it again in a heart beat (cold capping and even dignicap).
Even though I did not have as great of results as others did --I do think part of it has to do with the fit of the dignicap and the duration of time they let you keep it on. I hope they work on it for my fellow cold cappers in the future.
Below is an example of my hair loss pattern - which is the place that is a known issue for Dignicap - darn, I dislike being typical
. The bottom pictures are from today - I still only wash my hair about once a week. I also wear a topper now -- which I am glad I found, cause I use to wear extensions before bc/Chemo - gives me both length and some volume. and of course it covers the bald spot
I still do the hair fibers and hair powder spray -- the picture below 'after' was only a quick and dirty 'cover job' as the topper went on, by the end of the week before washing, it has good coverage (it builds) - I included it to let you know that EVEN large bald spots can be filled in - just get creative.
Also, you may not be able to see it - I am 11.5 weeks PFC and although my hair continues to shed, I have about 1/4" of new growth - very gray ... however it is growth- so I will take it. Don't give up - keep going, it will help on the grow in and most of my bigger loss was post chemo - when I was able to handle it mentally a little better.
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Moving slower than I normally am almost a week past infusion.....I believe my RBC count is really low. I have bad headaches, some dizziness and blurry vision at times. Taking prescribed iron supplements and took some beef liver I made and froze out to eat tomorrow-- yum! Lol! I can tell things taking longer to bounce back, but that's okay, only 1 more to go! I got this!
PatinMN-- Funny you should ask about an explanation of my undiagnosed tumor-- you cannot believe the shock on our faces when the BMX surgeon delivered the pathology results! My onco is coordinating a meeting with the radiologists that read my mammograms including the one from April 2017 when diagnosed with smaller tumor, and ones from years prior. They say the large tumor had been growing for years, and I have been getting mammograms (&MRIs) for almost 15 years. We know the exact location of the tumor from the BMX pathology and I want to look at that area on the films and see where and how that monster was hiding. I don't want the meeting so I can point fingers of blame, but a teachable moment that may help someone else in the future. Makes me wonder how many others that have lumpectomy to remove smaller tumor followed by chemo and rads, only to have a "reoccurrence " 5 years later are not actually experiencing a new tumor but one that was already there all along. Appointment will be sometime after chemo finished. I'll let you know how that goes.... and thanks for asking. It happened for a reason, and I am always open to share about it, and I feel blessed that I had the BMX, and that it is all still treatable.
Had a lazy day in my jamas, no makeup and never even took my hairnet off that I sleep in. Saw a couple of neighbors and friends, and I think they have gotten used to seeing me appear normal having my hair and all. But I could see in their faces that this image of me with hairnet, limited eyebrows and sallow skin jarred their memories that I am going through chemo and every day isn't Sunshine and roses like I work to put out there. Point is, capping is amazing in its ability to make everyone forget chemo exists in my life....which is great regarding strangers and random people, but it makes friends forget too.....so it was nice to have some extra love and sympathy sent my way by people I love and have just "forgotten" I was still going through all this. Just a little snipit from my daythat some of you may relate to.
Travelgirl-- love the fancy photo lineup! I can certainly see how you have thinned on top PFC. You do an amazing job covering and blending it-- and that last pic is without the topper-- right? Your color looks great too!
Happy capping everyone!
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Hey Travel_Girl
Thanks for your courage to share those pics. I can’t get myself to take the pics. TONS of shedding 14 days after 1st infusion which continued into second. Slowed in past few days. Literally waking up for third infusion now. Driving into DC, which is a drive but after three opinions, I like the team at that hospital.
Doing our own elastogel caps, donated by Friend. Grateful to husband and daughter to help as the premeds make me very tired and ‘out of it’ during infusion. Question about my bald spots...I’m worried about frostbite today during the 7-8 hours of CC. Besides moving the part, did anyone put a light piece of gauze on their head to protect their scalp? Any other suggestions?
Grateful for all the information and love on this site. Everyone here, sharing their journey and support is truly an inspiration. Sending love and light to you all.
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Quick rely re gauze since you are driving in at this moment!
First-- you go girl! Knock this infusion out of the park!
Second, sounds like you went through "the big shed" that we all go through after the first infusion. For most of us it falls around day 18 and lasts a week then tapers off. Hang in there!
Third-- Yes, use gauze! The hospital will have some you can use. Jus place it over any areas of concern. I place the gauze and then put a hairnet (I'm all about the hairnets!! 😜) on top to hold in place and keep Velcro from PCCs from pulling on hair but not a worry for you. Gauze will protect from burns and the cold will go right through it! You've got this!! Good luck today!! 💪🏼🙏🏻
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MamaFelice -- yes the second picture bottom is my bio hair with light brown caboki hair powder and bumble and bumble brown dry powder (basically it is hair/scalp spray paint). I have to admit I have spent far too many hours on utube/pinterest and thankful to my alopecia sisters that have paved the way w/ creative hair loss solutions - I found options that would work -- the 1/4" of new growth gives the hair fibers something to stick too. The Donald trump comb over helps blend some of the 'blonde' highlights from the front - just makes me laugh - cause what else can you??
I don't have to wear a topper -- i could get away with creative hair covering - I just like longer hair and my topper has fantastic color versus my multi-color spray on tactic. In short, in most cases the topper makes me feel my best self, versus what is left of my hair. I am THANKFUL for the option and when I am working out ... without a topper .. I feel great.
MeTooandYou -- I mostly took the pictures for myself cause I can't see the top of my head! I do videos diary's for myself -- so I knew what I was dealing with. I didn't take any pictures in December as I was recovering from my BMX and I could not lift my arms high enough to get the top of my head (or I couldn't be bothered to do it??!) - probably a good thing. I ventured into the wig store in mid-December as I was looking for 'ideas' to look super healthy versus the chemo grey ..
When I started taking the pictures after my second round of TC, it would send me into a mental tail spin - I am getting past that and focusing on growing healthy new hair. As you can imagine, some days are easier than others
I included the pictures for anyone thinking of driving 2+ hours for Dignicap - I would not do it - I would rent the other caps and learn how to do it, I think you will get a better outcome on the top of your head where Digni has issues and the chemo nurses all have different ways of making the cap 'fit/work'. Digni is convenient and if that was available to me and I didn't have helpers, I would do it again in a heartbeat - even w/ the loss.
For me, saving my hair, any part of it was the goal - as I knew it would help to regrow faster AND taxotere has 6% chance of permanent hair loss. That made my decision. And without the hair I do have, I would not be able to clip in the topper - I am full of gratitude for this option.
Happy Capping everyone - I hope this helps someone out there - as this board really helped me when I was making my decision on my treatment plans.
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Girls, I'm done with chemo and the cold cap..can I get a YEE HAW?!I rang the bell and retired my “Amelia Earhart" cap!
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A big "YAY" for you!!! Been thinking about you today.
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Congrats ‼☆ YEY !!! Thank you for shearing your pictures . I have 3 more left so just a little longer (^^♪
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YAY!!!!! -- Congrats!!!
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LizbethM. - congratulations on your last treatment! I’m so happy for you
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Jumbo Congrats Lizabeth!! So 😃 For you!! YAY!!
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Hi everyone! I was just diagnosed with breast cancer in November and I’m getting ready to start my first round of chemo 1/30/18. I’m doing 4 rounds of Taxotere and Cytoxan. Once every 3 weeks. This is so foreign to me that I don’t even know what the norm is. I am so happy to have found this site. I am 44years old and less than two months ago I thought I was healthy. It hit me out of the blue to find out I had breast cancer. I had a lumpectomy and lymph nodes removed and all the tests came back pretty good. I scheduled my mastectomy and when I finally got my head wrapped around that, I was told I needed chemo. The thought of losing my hair was devastating. My oncologist told me that I would lose all my hair with these types of chemo drugs but I had a friend tell me about cooling caps. While I was researching them I found u all. I decided to go with penguin caps because the Dignicap is not available at Stanford. I live over an hour away from the hospital and in traffic it can take close to 2 hours. I was hoping to get any feedback on supplies I should get to help make the cooling caps work better and how to survive the pain. I was wondering if I could take Rx pain meds on the day of treatment to help with the cooling caps. The thought of having a 9 hour brain freeze didn’t sound that great and my pain tolerance is nonexistent. If anyone has any tips that would be great!! I have less than two weeks to go and I’m really nervous.0
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Lizabeth! JUMPING FOR JOY FOR YOU!!!! HURRAY!!!!
Hmm your cap looks different than my cap. I wonder if mine is an even older version - hence still needing those bean bags.
MamaFelice - I'm doing the EC (Like AC but more common in Europe) every 3 weeks.
I just had an overnight in the hospital because of neutropenia. WBC to 800 and neutrophils at 20. I guess all 20 of them were in the sample. Two shots of a lighter drug than Neulasta and I'm back home still with a horrid throbbing on a tooth, so I'm soon scurrying out the door for a dreaded root canal (wow, when things go south, they go really south!).
My doctors have told me that I am the exception to the rule ---- I don't think that's good.
Day 16 PFC and hair on my head is still hanging in there tightly. It looks like a rat nest, but I want to keep my unruly, unkempt rat nest. With a hat squished on top, it almost looks normal. I might break out the hair color powder soon because I'm getting to the point that people will stare at me because my hair obviously needs some professional attention (and those wigs are so lovely....) In fact the reason I couldn't go for the wig is because anyone who knows me would know its a wig because I've never looked salon ready --- only desperately ready for a salon.
Sarah - I did not find the hours of cold capping to be bothersome at all, but I have a massive amount of hair, so maybe it was more protective of my scalp? Next round is on Monday, I hope to report back that round two wasn't a big deal either. I also hope that having a lot of hair allowed it to properly work. If I have any loss it could happen any day now.
Hair is going elsewhere, though..... that's fine. And when my mustache goes that in itself will be cause for celebration!
Will it grow back dark and bushy?!??!?! Up until now, it has been blond ....
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Sarah, my chemo regime and schedule are closely parallel to yours (except for the traffic part, as I'm fortunate to live about 10 minutes from the infusion center). My 1st TC infusion is 1/26, with three more at 21-day intervals. I'll be using the Arctic Cold Caps. Everything I've read, including the great discussions here, has suggested dressing warm. Although my infusion center has blankets, I went online and purchased an electric throw blanket, as I thought a twin bed size would be too large and unwieldy. I've also purchased little sock-like booties which have pockets for gel-filled freeze packs to ice my toes during the "T" portion of the treatment. Likewise, I've purchased separate gel-filled freeze packs (3" x 5" size) to ice my fingernails. I'm not looking forward to the brain freeze, either, but all of this planning has helped me, emotionally, to feel that there's at least some small part of this process over which I have some control. Hope the pieces of this great big jigsaw puzzle fall neatly into place for you.
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For the newbies -- I did an electric twin size blanket -- it was wonderful - I also wore my big ughh boots. In hindsight, I wish I would have iced my toe nails during taxotere - as my big toe nails are now many shades of purple and I had toe neuropathy (I am 12 weeks post final chemo - PFC - and it is going away - just not completely yet). I had it less on my hands, it went away within 2 weeks PFC.
So if you can stand it ... try to ice during taxotere if you are on TC
As for RX, my oncologists gave me 1 Oxycodone per session, I took it as soon as I walked into the infusion center (I didn't have an RX, they gave it to me there). It helped, so if you can get a pain med, go for it - otherwise -- go for advil or something else.
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Amelia-you just reminded me..for my fourth and final chemo I walked into the chemo ward and my nurses told me that they had the new Dignicap. So maybe your hospital will, too? There are two knobs up above your forehead that you can use to tighten if you feel like it needs it-that really helped on clamping down on the trouble spot on top. Also, you can put down on chin strap to adjust-strap is more comfortable
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Shlomit-thank for the advise and I will go online and order some mittens and booties now. Good point about the electric blanket. I thought that might be too big. I’m curious if you are doing a port. Because I only have 4 rounds I decided against it because my friend said it will leave a scar. I’m trying to imagine my arm laying flat with an IV in, cold cap fastened to my head, cold mittens and booties, electric blanket laying on me, all while trying to drink as much water as possible and getting up to go pee and change caps. 😂 I have no idea how I could read a book or listen to music or watch a movie. Sounds like just keeping everything in place will be a full time job. Also was wondering why u chose Arctic caps over penguin caps. I’m ordering my caps on Monday and didn’t know which would works better.
Amelia01- good luck on Monday!!
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Sarah, to answer your question, yes, I'm doing a port; it was put in yesterday. The port is in the upper part of the opposite side from where the lumpectomy was done. The incisions are relatively small, and it is completely under the skin, but I suppose there is a chance there may be some small scars which, in the grand scheme of life right now, aren't an issue. Like you, I also am only having 4 rounds. Immediately prior to (on the infusion day), and between, each of the rounds, the oncologist's office will be drawing blood to test for red/white cells, platelets, and the other stuff that they're monitoring, so that's a lot of extra sticks, finding veins, etc. Over the years, and long before all of this came into my life, my veins have been relatively small, deep, and roll. They're a pain to find, and it's uncertain whether they'd hold up for an entire round of chemo, let alone 4 + blood tests. Logistically, for me the port seemed like a wise idea, although today it's still rather tender as it heals from yesterday's procedure.
As for the choice of the Arctic caps (which are pretty much the same as the Chemo Cold Caps, except Arctic sends 8 instead of 6), the videos I saw for the Penguin caps made them appear somewhat complicated to use. I've seen it referred to somewhere as like origami. Clearly, I've read favorable reviews for all of these cap styles, so my comments aren't intended as a put down of a choice. It also was important for me to find a "professional" resource to train and assist my dear friend who has signed up for the 1st 3 rounds, and so my friend can train another friend for #4. I looked hither and yon on the world wide web for all kinds of resources, including emailing the various companies directly. While some major metropolitan areas have such outside resources, to my surprise my resource-rich area (Metro Washington, DC) had none. When I finally called Arctic, which is just outside of the Philly area, it turned out they have a nurse with whom they work who is based outside of Baltimore. It's costing me an extra day to have her come on the 1st day, but as with the entire cold cap effort, I look at it as an investment.
While my fingers are on ice during the Taxotere part of the treatment, I pretty much figure I won't be able to do too much other than chat; it's not like I can scroll through Facebook or read an e-book. That's only 1 hour though. I see it strictly as a 1st world problem, and the least of my worries right now.0 -
SarahSC-I just completed 4 rounds of TC and did not need a port. I did an IV each time and it wasn't a problem at all. Just a thought, ask your oncologist about that because mine was the one who told me I didn't need it. Good luck with this upcoming journey! You will get through this! :-)
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Hi Cool Cappers !
Im new to this thread - but i have been reading so many of your posts which lead my mumma to the decision of using cold cap during her chemo.
You're all so wonderful and brave to share your journey. I am so thrilled to see that this option has worked on so many women. I only hope for the same for my mother. So thank you for the hope !
My mother starts her first round of chemo ( EC ) tomorrow afternoon. The hospital has provided a cold cap machine called paxman. She is a little weary about the discomfort and if she's able to handle the low temp, but I'm hoping she will persevere through the first 10 mins and be able to complete it !
Sending you all warm wishes from London !
Kindest,
Sarah Xx
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Sarah, have your Mom take 4 Advil about 30 mins prior to the cap-it will help so much with the ice cream headache!
Also, I had an electric blanket shawl around my shoulders-keeps you warm!
Silk pillow case. Get a paraban free, sulfate free shampoo-only wash 2xs week. No heat products -blow dryer, etc.
Good luck to your Mom
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LizabethM-my oncologist said it would be fine too. She gave me the option so it’s nice to hear it wasn’t a big deal. I have huge veins so they shouldn’t have a hard time finding one
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Lizabeth - Thank you for the tips!
Will let you know how today goes !
Lots of Love
Xx
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I just finished my 6th/final round of TCHP last Wednesday (1/10/18) using Arctic Cold Caps. This is my hair one week post final chemo, it has thinned a great bit, but is still covered! Most people say they can't tell a difference, but I can tell a difference in the thickness of my ponytail. I am continuing to shed pretty heavily, but fingers crossed it slows down in the next few weeks. I have to say so far I am very satisfied with my results using Arctic Cold Caps.
Ladies, if you are just now beginning your cold cap journey or considering giving it up, DON'T! My oncologist and his office did not support the use of cold caps (I found out about cold capping via Google). I was told they it likely wouldn't work and wasn't worth the "pain" and hassle. The exact words I was told was "embrace the bald, it's only temporary." However, I am stubborn and still wanted to give it a try, so I ordered them anyways and do not regret trying them at all. My oncologist and his team has admitted they are impressed so far! Hopefully more oncologists will get on board and let ladies know that there are options out there!
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