Cold Caps Users Past and Present, to Save Hair
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Ralston - i was the one that had a bad association with the caps. I couldn't even open the freezer (where the caps were stored), because the smell made me sick. I couldn't even wear them at home in between treatments. Just the sight of them made me gag. I agonized over treatments because of the caps. HOWEVER .. that all changed when i switched to taxol. Also, instead of taking Ativan, i took tylenol. My taxol treatments were longer, but much more tolerable. I was able to eat, i laughed thru treatments - much, much better. I lost 95% of my long hairs. But now (5 weeks PFC), my scalp is filling in with short hairs. I wear a wig most of the time, but at home can get away with a scarf. Enough hair shows, so i don't look bald. I was never bald, and that was my goal. My kids never saw me without hair. That's my victory. Let me know how you do.
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Just a update--finished my taxotere and carboplatin march 24----Going on 5 1/2 months and finally--my hair has balanced out! The shedding is normal---about 2 1/2" of new growth underneath---have about 50% of my orginal hair---use clip in extenstions to fill out the balance--
Not to use this forum as a venting post---so glad I did the cold caps with my fianacee---just last week--he dumped me saying he is over my illness and how I look--gee after our strong bond of the cold cap experience --now he's over it---some guys really bite---but girls I still have hair to move on with my life and find a new quest---hopefully!
Good Luck All!!!
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Restarted cold caps yesterday for Taxotere after a 4-month hiatus doing TDM1 (which does not cause hair loss). I cried through almost the whole thing, wound up taking 4 ativan through the course of the day, and took a Vicodin to boot so I could bear the searing pain. So yes, cold caps are hard.
I had planned to just go bald this time, til I read about those poor women with permanent baldness from Taxotere, so we fired up the old credit card, dug out the coolers, thermometer, and moleskin and did it again. It's not easy, I'll say that.
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I am so sorry that some of you had so much pain and nausea with the caps. I feel very lucky that it was more tolerable for me. I know I especially dreaded my last treatment but I can't imagine how you gals have felt knowing it was much harder for you. Hugs!
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sashasz3: I'm sorry for your breakup. BC diagnosis and treatments test all relationships, to be sure, and it can be surprising (and shocking) who is standing by our side and who falls by the wayside. I'm glad a good friend prepared me for that in advance. For many couples, the whole thing can be threatening to the partner: changes in the amount of time you need and (must) take for yourself, clarification of things that are important to you, changes in the balance of power and the fact that you need more from others, changes in the domestic workload balance (it's nearly always out of balance even on a good day). Changes to lifestyle. Changes to values. Add to all that, the giant hit our femininity takes with all this, and reconstructing and reclaiming that femininity. It must be trying right now, with all you have gone through and continue to go through, but you will meet that person who is meant to be by your side, who appreciates your strength and courage. You'll find that soulful, adaptable person who will be by your side through all of life's changes, they are many. I appreciate you and I haven't even met you in person!! :-)
Had my semi-annual appt. with my radonc today; I got another "all clear" from her, and now I only see her once/year. This week is the one-year anniversary of finishing rads. She recommends the caps to her new patients, btw. Yesssss....
Susan
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thank you, sebm9- I will not give up!
Is anyone else getting rashes ? I am now after two and a half months past my last chemo. I have one on my left shoulder and they say it cannot be from my right breast rads- can only be late chemo effects.
Still shedding off and on. I think I am done and then it starts again. I had two days recently when my hair felt solidly firm in my head. I started running my fingers through it becasue it felt so good! but then the last two days I have been dropping hairs like crazy- some long and multiple strands together as well. That is a bit scary.
I am VERY itchy due I think to regrowth under the stringy hair that I have. I can see some hair growth on the sides and so I am assuming it is what is so itchy all over but- no flakes anymore since about three weeks now and even then I only had one major spot. With this hair growth itchiness, I want to scratch all the time for long periods and then it rests for long periods too. Still going through it....
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Yes I have rashes! Usually starts 1 week after chemo. Onco prescribed steroids but I am trying to not to take as steroids wreck havoc in my system. By the way I have been advised that jojoba oil with drops of rosemary essential oil can encourage hair growth when massaged into scalp.
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I had horrible rashes and itching for over three months. It finally just went away. Dermatologist was baffled. I used vanicream soap which is pure and Sarna cream to sooth and stop itching. I.also took antihistamines. Steroids would.work but as soon as I stopped them it came back.every time.
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OMG! I have the worst rash now too! It covers my back and stomach and itches like crazy! Also, I have a little bit of the rash above my eyes, neck and ears. I am 9 days out from third infusion. How long does the rash remain active? Did you ladies go see the doctor when it appeared? My doctors sent in prescriptions but didn't think I needed to go to be checked out. This sucks!0
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My rash started a week after my 3rd infusion - before Easter. It lasted until about a month ago. My med onc acted like she had no idea why I had a rash and it was not from the chemo (whatever). My dermatologist was baffled. I was on 2-3 cycles of steroids to get rid of it. I used all kinds of topical steroids and creams to help in addition to taking antihistamines. I also went to my internist. No one really knew what to do. Finally my dermatologist said for me to stop taking all my vitamins and use only vanicream products on my skin. They also had me continue to use Sarna Lotion (you can find it in the first aid section...it's menthol like and helps with flaming itching and burning feeling). They also gave me an rx for a different antihistamine (other than Claritin and Benedryl). If finally went away. I was miserable for over 3 months though. My rash seemed to be like a heat rash...prickly and itchy and then it would get red and bumpy. I had dry skin like bumps almost all over my body. They finally started going away on some parts and when went on vacation last month and I got sun, the rest went away except I still have them on the backs of my arms. They don't go away no matter how much lotion I put on them but there is no itching. My rash was super bad on my chest, neck, shoulders and arms. At one point it covered about 75% of my body. I was getting pissed with med onc acting like she had never seen a patient with a reaction to chemo.....taxotere has this listed as a side effect. It was frustrating because she washed her hands of it and told me to see a dermatologist or my internist. Really???? Come on! I feel your pain on the rash. I wish I had better advice......
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I am so sorry for the girls who experience nausea during cold caps making it difficult to continue. It is unfortunate to make it so far and have to discontinue the caps. My heart goes out to each and every one you and I wish you all the best.
Ralston: Maybe as LivCar, you can try the caps for one taxol treatment. I just feel for you and your situation. I must admit I do admire your sense of humor and your boldness - I couldnt have gone into a grocery store and sought comments on my hair - heck I cant even post pictures here of what my hair looks like. You are a strong woman!
FrancesC: My Int Onc also mentioned rosemary oil to stimulate hair growth. I was planning on waiting for my shedding to subside before I started putting anything on my scalp. I also read that jojoba oil is good for getting rid of a dry scalp and flakes.
Sashasz: Sorry for your breakup - that must be difficult to cope with. When I was first dxd I read an expression that Cancer is a closet cleaner in terms of friends/relationships etc. I cannot believe how true those words are. Some of my closest friends abandoned me, yet others who I did not expect were here for me. I have learned very quickly to move beyond the ones that disappointed me and treasure those that are here now.
Update: I am now 6 weeks PFC. I did experience extreme itchiness, dry scalp and flaking/crusts. I decided to start washing my hair every 3 days with tea tree oil shampoo approx 14 days ago despite the increased hair loss with each wash. Within 3 washes my shedding has diminished significantly and my scalp is far less itchy - I am able to stop myself from scratching which pulls out the hair. The scales/crusts are nearly gone as well. In the last few days I have noticed a lot of very fine white hair growth along the front. My husband states that my scalp is less visible as it was - it was very visible through strands of stringy hair. Most of my loss seems to be on the top, sides and crown.
To maximize the hair growth I am taking silica, biotin and a multi vitamin each day. I juice cabbage, cucumbers, kale, apples and lemon, of which cabbage and cucumbers encourage hair growth. I invert for 10 minutes daily to improve blood flow to the scalp. In the next week I plan on rinsing my hair with rosemary tea - another way to boost circulation.
In the past week my eyebrows have started filling in. First the hairs appeared white and fine, then the color started to return and they seemed to come on strong once the color returned. They are approx 3/4 of what they were, but they look so much better. By this time next week, I hope I do not need to pencil/powder in the gaps.
Unfortunately my eyelashes have started falling. As of last week, I thought I would not lose them as they remained full and healthy. Over the last 3 days, they have changed color from dark brown to orange/blonde and decreased in diameter. They seem to have lost their curl and texture appears very fragile. The bottom ones are nearly gone and the top are continually dropping into my eyes. I have been using latisse and revitalash so I hope that new growth is on its way shortly.
Overall, I am encouraged with the decrease in shedding and noticing the new growth, albeit only a few fine white hairs, but I am sure the army of hair is on its way! I lost more hair than I thought I would when I started cold caps, but I did not end up bald and I preserved the hair follicles from the harshness of taxotere. It will only get better from here.
I wish everyone continued success and as I remember someone saying - I think Nancy Keep Positive - "A bad hair day is better than a no hair day" So very true.
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ThanksDdebrox and Susan for the kind words! Wish I could be stronger and just get him out of my head---trying my best!!
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Sashasz: I feel your pain. I found out I had bc a week before my wedding. It has been very hard to navigate a new marriage and under go treatment! He sounds like such an asshole by the way he ended the relationship! There will be something wonderful for you around the corner when you least expect it and you will have beautiful locks to style any way you wish!
MDG My onc said he never heard of it but he passed the problem to his fellow and she is helping me. I looked online and rashes are common side effects! I will struggle if this keeps up. Did you continue with workouts and how did you handle bathing? I took a hot shower yesterday and wonder if the heat had something to do with it. It was cold here in Boston! This rash cover more than 75% of my body right now. I am to uncomfortable to go for a walk, run or do anything.
Debrox: That sucks about the lashes. I have a feeling mine will go after chemo. I am using latisse but not regularly. They thinned more than my hair.
I have 14 days left until my fourth and last infusion. I am excited to be close to the finish line but nervous that many of the issues ( shedding, rashes etc.) continue. I think I have 90% or more of my hair or more but hard to tell because it is so flat and dirty. The post chemo experience sounds difficult too. I have a feeling the heavy shedding will come soon for me.
I wish everyone a lifetime of good hair days!
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Debrox I invert daily too. I also juice cucumbers etc. Take powdered greens too. I added lymphatic drainage massage and rebounding to try and flush my lymphs.
When my rashes started I added flax oil to my diet daily and that calmed my skin down. I think different things work for different people. Chemo seemed to make me oil depleted inside and out.
My hair is roaring back. Just like past users said it would. I finally did the permanent color as I had so many colors as a result of using the Beautiful Collection color which turned my hair pink fuchsia etc (groan). But now I am back to normal and really enjoying having hair.
Sashasz3 sorry you had to go through a break up. Seriously if he left he was not good enough for you. In a lecture I attended Maya Angelou said in a booming voice 'thank god I am divorced', her joy in saying that has impacted me to this day. A better partner is coming your
way.
Ralston....I sent u a pm...
Now if I could just get rid of the muscle pains....0 -
Sashasz3: Sorry to hear about the breakup but you are so much better than him and you deserve and will find better.
Monday I'll be 14 weeks PFC and hair loss getting more normal every day. I have so much new hair around the ears and nape of the neck. I have this skinny little nothing pony tail and it looks like I did one of those shave jobs and left a pony tail. I'd love to cut the ponytail off but everyone says to leave it. When the hair gets long enough around the back, I will cut it off.
I had that horrible taxotere rash but fortunately it was mainly on my face, arms and chest and cleared up between chemos and is completely gone now. I still occasionally get the weepy eyes and runny nose though and will be glad when that is gone.
Luckily I didn't have the adverse reaction from the ElastoGel caps as some are having. My most difficult was trying to wear them between chemos as they did bother me then but not too much during chemo. Hang in there girls...if you can make it, it really is worth it!
DEBROX: Sorry to hear about the lashes too. I understand they come back quickly. Mine haven't fallen out yet and hoping now that I am almost 14 weeks that they may not but we just don't know.
Only 13 Herceptin infusions left...sounds like a lifetime but this too will pass.
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My lashes went about 8 weeks pfc and were back within 2-3 weeks with latisse and super thick. Use lots of eyeliner...that is what I did. Oh and I wore my glasses more instead of contacts.
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Hi All!
I got diagnosed today- the rash is SHINGLES! I have never had anything like that before. I am now taking anti-virus meds. I am in a lot of pain and the blisters are spreading along the nerve line. THis is from stress. Holy moly.
Just so you know, it might be shingles!
Have a great weekend, all,
Elizabeth
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Oh- I almost forgot- on the more positive side- I got to see my chemo nurse ( a favorite) and she remarked that my hair was really impressive. Ha ha! That felt good.
Again, have a relaxing weekend, all!
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My rash looks likes hives. How much of your body is covered by it?
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Mine was more hive like. I did not have blisters.
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I am officially done with chemo- now on to all the joys of PFC. I managed to keep all my eyebrows and eyelashes through chemo. Lets she what follows. I am still shedding but it is light. But as said, I have less to shed. I'm just looking forward to not feeling like crap, oh and can I have my brain back? My memory is for the birds. leaving for a work/vaca on Saturday. Driving across the country to find antiques/junk for my store. Just getting away to someplace that isnt all about BC is going to rock. I just wanted to say, I am glad that i did the Dignicap. It shows a lot of promise for the future for cold cap therapy. It does have kinks but that's what being a part of a test study is for, to help work them out. Hope all of you have a good weekend, and that the rashes go away soon
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Well, I decided to wear the PCC on my first Taxol infusion next Wednesday and I will let you know how it goes. Thank you for your wonderful support and advise, it really helped.
My eyes are incredible itchy and my face is full of "little bumps" and red (not blister or acne). It look more like hives, but I still not have had any Taxol infusions, so it can't be that. I ask my ON on Tuesday.
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Congrats dexxy!!!! You have officially joined the us in the Fresh Start Club!
I just returned from. 9 day trip, and you know what, getting away was the best thing I did! It helped me feel real and normal again. It made me forget what I just went through and made me realize I can forget about cancer!
Have fun on your road trip and finds lots of stuff for your store. I'd love to visit it one day when I'm in the area.
Ralston: I am so glad that you decided to give the caps one more chance through taxol. I think about you often and how hard it is for you to persevere with the caps.
I know for me being in the other end, I am so grateful to have hair, no matter how much fell out, I still have it. Having hair made it easier for me to deal with losing eyebrows and then subsequently the recent departure of my eyelashes. I do wear a wig in the evenings, but I wear a hat during the day. But I do not have a bald head, never have. What I have noticed now being 6 weeks out, my hair is growing and filling in the scalp. I have a lot to cover, but it is coming back.
Please talk to LivCar if you need additional motivation. She went through the same treatment as you and she lost a lot of hair. She is so grateful for the hair she kept and her hair is now growing back healthy. Hang in there Ralston!
On another note, a few pages ago I complained that I was experiencing an early winter in CA due to all the white flakes falling off my head, well winter is over and now Im experiencing autumn/fall. Why? Suddenly as in the last 3 days, my eyelashes have changed color, just like the leaves in the fall after early morning frost. They have changed from dark brown to orange and they are falling out. Nearly lost them all overnight. I didn't think I was going to lose them, as I made it this far, but at least my brows started coming in strong last week, compensates for the loss of lashes.
Now I look forward to spring, a time when I experience new growth! That is just around the corner, I can feel it
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With that said, my husband stated this morning that my scalp looks less visible today! Upon close examination, I can see new baby fine hairs that are springing up, it is a matter of time before they are springing up everywhere.
Hang in there current cold cappers.... Your spring is coming soon!0 -
Ralston: are you taking steroids? I had bumps underneath my skin on my face during treatment. They would manifest themselves a week after taking the meds and last for a few weeks. But I also had bumps underneath and pustules. I think it was attributed to the steroids. They are known to cause skin problems.
I also had itchy eyes, but I am using latisse, known to aggravate the eyes.
I hope you do not have an allergic reaction to something. I would discuss this with your MO. take care and thinking of you. Debby0 -
Debby - They were giving IV Decadron before AC and orally 2 days after infusion for nausea, but the Decadron really didn't help me, so I will be really awful if instead of helping me with my SE's created more!!! Thank for sharing, I don't know what kind of pre-meds they will give me while in Taxol, but Decadron will not be one of them. Thank you so much for your support! I am so happy that you are doing better (at least you sound much much better). Good for you!
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The shingles started like a couple of bug bite looking things on my left (opposite of cancer site) shoulder. They itched. Then two more and I thought I must have a persistant spider somewhere or a mosquito. THen they spread more and became very sore- prickly and burning. THen I saw my lymph therapist who thought they were from chemo- the rash from that. Next day I went to Rads onc and the nurse said must be shingles. By then they were long blisters. Went to chemo onc and PA said she knew right away they were shingles. I am too late for the antiviral pills to do much good but at least more will not come they said- but more did come- just today. I am so done with all of this.
My joints and lymph nodes hurt everywhere from this. I is too much, really. SOrry to vent!!
Elizabeth
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So sorry to hear about it Elizabeth. Hope they go away soon.
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I feel like we should be warned about the rashes and skin irrations by our doctors or nurses because there is a small window of time to treat them before they spread and become out of control. I am covered in a huge itcy rash and can't do much. My feet ands hands are swollen and I feel strung out on Benadryl and the Hydroxyzine. My team of doctors didn't act fast enough and yesterday was my biggest shed day so far. Itching my scalp for two days contributed to the hair loss.
Elizabeth: it is to much! I was bit by a dog two weeks ago and that was an easier experience by far than this!!! I would take 5 dog bites over this rash.
Ralston: Can you wear the caps for a shorter time with taxol?
'
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So sorry to hear about the shingles and rashes ladies. Hope you are feeling better soon. I know it is hard to believe, but this will all pass soon. When my face was all broken out, I thought I had rosacea but it was 'just' the taxotere (nasty stuff) and it is all clear now plus I THINK my hair has stopped shedding. I won't get too happy until it has ceased for a few weeks and not just days.
Good luck everyone!
Arlene
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Hi Ladies - just popping in - just had my first "normal" haircut and color. I am 20 weeks out PFC with TCH. I let my hair stylist color with my normal all over permanent color, then wash - in HOT water - then got two inches cut off from the bottom. Then she dried it with a hot dryer and a round brush. Isn't that crazy?!!! It felt so wonderful. My hair looks completely back to normal. Yippee! Oh, and I even had a friend at a school function ask me how things were going...she looked so serious...I had forgotten about the breast cancer. So, it is possible, life can get back to normal*.
Love to you all!
Annie
* new normal
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