Cold Caps Users Past and Present, to Save Hair
Comments
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Wow lighthouse, I can't believe she said that. I also think it should be reported.
Yesterday I washed my hair in the shower for the first time. I'm not shedding so I figured it was okay. I kept it cool and I used my hands to diffuse the power of the spray. I was probably being overly cautious, but I worked hard to keep what I have.
It seems like every time I look in the mirror, my hair looks thicker. The little hairs are coming in like crazy. The only area that still shows scalp is around the crown, where I lost most of the hair. It's regrowing there, but because there's almost no longer hair, it shows more.
I started rads yesterday and I just can't wait for all of this to be done with.
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Just wanted to share a little tip with those who are PFC and styling their hair normally now. My hair used to be poker straight. I lost most hair at the nape of the neck underneath where I didn't get the caps tight enough. That hair has come back in very curly. The rest of my hair appears nearly poker straight still. However, I have now discovered that if I wet my hands and "scrunch" my hair all around and let it air dry, I get a very nice natural wave/gentle curl all over. It would have never done this before. I love my new hair style. I guess all the little hairs I lost all over are now in, but since they are in between all my straight "old" hairs, I never realized that I have some curl all over. Scrunching my hair this way really brings out the new curl/body it now has.
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lighthouselady - what a b*tch. So glad you came back with a quick response. I hope it shut her up good. What did she say, if anything, to your comment about HER losing her hair?
I would definitely report this. Insensitive, selfish people should not be working with cancer patients. We have enough to deal with.
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Lighthouse: I would demand to speak to your oncologist immediately and tell him that his staff is unprofessional. I would also tell him that if they are not willing to accomodate you, there are many other oncologists that will. My sister is an oncology nurse and she would never say anything like that to a patient. SHe would be horrified to know that someone said that to a patient. Since I have been diagnosed and gone through all of my treatment, I have talked to my sister (chemo nurse) and my best friend (nurse that works for a breast onc surgeon) about how I was treated. Both were very bothered by the rude, insensitive comments I experienced during my treatment at times. It was an eye opener for them because both are very caring and supportive of patients and would never say/do anything like that. My sister even goes and visits patients in the hospital after work....she gets attached to her patients. I have been tempted more than once to write a book highlighting all of the bad stuff healthcare providers have said/done to BC patients. I would love to get copies and drop it off to every MO office! I would love to give a presentation to healthcare professionals on "what not to say" to a cancer patient too! This gets me so MAD! The one that REALLY gets me is the MO's that "refuse" to let their patients use cold caps. Really???? So ridiculous. If a MO is that closed minded and uneducated, I would think twice about getting treated by him/her. It is their JOB to stay informed and up to date on current treatment options.
OK -I am off my soapbox now and putting it away for the day!
Hang in there girls just starting.....PCC's work. Many of us here are proof. Sending "good hair" vibes your way!
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Lighthouselady I am catching up and just saw your post- the medical profession is CHOCK full of people who dont believe this will work. You are not alone! Almost all of us have had someone make a completely asinine comment about the caps.
Don't cry because that nurse is a putz- increase your determination to succeed. What you can do to get back at them is to follow all the rules, use the caps, and keep your hair!!!
When I went in for any appointment after my chemo - checkups, rads, herceptin infusions, they all comment on how amazing it is that the caps really worked. My hair now looks exactly like it did before chemo. My avatar pic was taken at the end of chemo, not before.
You will get there- and make that nurse eat her words! Hopefully she will learn to be more sensitive. And maybe even to encourage the next girl. Slowly the power of the caps is spreading, one infusion center at a time.
Hugs and GOOD luck!!!0 -
lighthouse - good for you! don't hold your tongue. i had to speak up too. it's the only way sometimes to knock people out of the routine-zone and remind them that they are dealing with individuals who are all going through a very difficult time.
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lighthouse,
good for you! The nurse was both ignorabt and extremely rude and I would certainly say something. Don't let her discourage you!!
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Completed my first cold cap treatment yesterday and found it to be no big deal. Seriously! The most difficult part was the premed timing with the caps but other than that, it went easily well. I kept the caps on a little longer than necessary after infusion - 6 hours intead of 4. It was not a bad experience and much easier than I ever thought it would be. When I first put it on the cap I would describe the feeling as some discomfort but very tolerable discomfort. After a couple of minutes it was smooth sailing. What a relief. I should mention that I took and Ativan and two Aleve before I put the caps on and I think that helped quite a bit. All in all, a good experience. And yes, I did run into a rude charge nurse when I first arrived who didn't want me to keep the caps in the infusion center waiting room because there "wasn't space" in the infusion center room. I balked at that and was able to get my personal nurse to allow everything back into the infusion space. Hopefully this will be an isolated incident and I'm also hopeful that once the staff see that the caps are being successful, they may change their tune. I just had to be friendly but forceful. It worked out ok in the end. Just wanted to share my positive experience.
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gildedcage - yay for you!! That's one down. I'm so glad you stood your ground. You are doing what's right for you, and that's important.
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Gildedcage, glad it went so well for you yesterday. I also took ativan and two aleve before each infusion and that definitely helped calm my nerves and dull the pain from the cold caps.
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gildedcage - I'm so glad it went well!!! I hope I have the same report tomorrow night.
I survived chemo class! I talked to the nurse (the one who gave the class) and she was MUCH more positive about the caps! Even told us that they would try to put us in a private room (they only have 2) since we'll have so much STUFF and won't be such a spectacle that way. LOL The infusion room is crowded with about 10 recliners sort of sectioned off, no privacy at all, and not really any room to even have the coolers, let alone give dh room to work around me getting the caps on and off. My husband asked her if they are receptive to the caps there, because we had a bad experience with someone at the MO's office. She was unhappy when I told her what that lady said to me.
Anyway, the chemo nurse was great. She said that she would have to read up on the caps so she can help us if needed and that they will be more than happy to work with me on timing, running saline for a bit after premeds if we need to in order to time the infusion correctly. Hopefully the rest of the chemo nurses will be just as helpful. Question - how long did your actual treatment last? They told me my premeds would be about 30-45 minutes and the AC would be 1 hour 15 min... 5-10 minutes for the adriamycin "push" and then a little over an hour for the cytoxan. That seems so short to me! Maybe not, but I guess I just had it in my head that we'd be there for hours & hours.
We stopped after dinner tonight and got the dry ice. I'm hoping it's ok... we checked the temp of the dry ice itself and it was only -35 or so.... is that cold enough to get the caps that cold?!? I always thought dry ice was like -50. I'm guessing dry ice is dry ice, though. Nothing we can do about it now except hope it works! The kid at the store (had to buy it at a grocery store) was dumbfounded when we told him we needed 100 lbs. LOL
I have to pack my "chemo bag" and we're going to practice with the caps again tonight... then that's about all I can do to get ready! We have to be there at 10:30am.0 -
lighthouse-Dry ice is -78.8° Celsius. There is no variation in its temperature. Good luck tomorrow, I'm sure things will workout. It's always nice when you have staff that is supportive.
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lighthouse - you bought dry ice at a grocery store? Unusual. For the future, I suggest you try and find a direct supplier, or at least talk to the store manager. They often give a discount when they learn what it's for.
I did AC-T. I didn't have to have premeds, and the infusion of the "red devil" took about an hour. The push was about 10 or 15 minutes. But your dose could be different. Your premeds could be anti-naus meds. I took mine in pill form.
Good luck tomorrow. You will do fine.
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Go Lighthouse!!! Good luck...sending "warm" thoughts today!
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Lighthouse - so happy your chemo nurse was so much more receptive and nicer!
Yesterday I saw my gyn, one that I had told before about using cold caps. She had her resident gyn with her (who is training to be a gynelogical oncologist). My gyn said "I saw a story about cold caps on tv since we last met!" How cool is that? I made an impression not only on her but also the resident who will be doing oncology care. Making doctors aware, one step at a time, hoping they spread the word!
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Yay Gildedcageand GOOD LUCK lighthouselady!
Hooray dancetrancer for continuing to spread the word. I wish I could help reach out to more girls who are just getting diagnosed to let them know that the caps are out there for them to consider.
Maybe this new era of oncology trainees in medical school and residency will be more open minded!! Women should at least be informed so that they can consider it.
I agree, the private rooms are definitely the way to go if there is any way to swing it. Most infusion centers only have one or two (if any) but if you get there early and request a private room, sometimes you can get these. It really helps!!!!0 -
My first trip to the AC bar is done!!! :-) Still have several hours of changing the caps every 30min, but at least we are home. Hubby is able to relax in his recliner in between and I'm on the couch in my electric blanket. The infusion was pretty quick. Took them a while to get to me, but my premeds (steroid & antinausea) were 20min, adriamycin 10min push and an hour for cytoxan. Then another 10 min for saline and we could leave.
I drank a bunch of water this morning, had a watermelon slush there during chemo meds, and now I'm back on water. I thought about icing my hands and toes during cytoxan for avoiding neuropathy, but with the cold caps I just couldn't do it. LOL
Neulasta shot tomorrow.....when do I take Claritin? In the morning? After my shot? For how many days?
Shipsgirl...we live in a city of 120,000 people and would you believe the ONLY place we could get dry ice is the grocery store? The clerk was a little dumbfounded when we walked in and asked for a hundred pounds. LOL I've called all over town and even had Airgas headquarters trying to help us find a way to get it cheaper. No luck.
We did talk to the managers at the three stores that carry it and told them what we need it for, how much and how often. They didn't give us a break on price. Hmph.0 -
lighthouselady-Glad things went smoothly! Take the Claritan in the morning before the injection and continue for 5-7 days. Ask the grocery store who supplies them their dry ice, that's who you should try to contact.
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lighthouselady - I'm glad the first treatment went well for you. I don't think you need to worry about neuropathy with AC. It's the taxol that can cause neuropathy. Also I don't think icing fingers and toes does anything for neuropathy - it's more for protecting the nails which can be damaged during taxotere (not so much with taxol). I had taxol (only), and my nails were fine throughout chemo, although now they are thin and break easily.
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lighthouse - sorry you didn't get a discount. Where is compassion! So glad you made it through the first one. I found that the first AC was the worst and subsequent infusions had fewer and shorter-lived side effects.
You don't need to ice during AC. Depending on your drug for the T portion of your regimen, you may not have to worry. I had Paclitaxel and it doesn't cause much neuropathy. I had a little bit of tingling but it was gone about a week after I finished chemo.
Keep us posted on how you're doing.
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Ok, so I was feeling fine and dandy until about 30 min ago. Total nausea already!! :-( I wasn't expecting it so soon. Took a pill and I'm hoping it kicks in. maybe because I'm doing dose dense?
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Lighthouselady,
I'm not a cold capper but want to chime in and encourage you. With the first infusion hopefully the oncologist and infusion center are doing everything possible to help you avoid uncomfortable side-effects. Still, we are all so different, so some tweaking might be in order next time.
So you have a point of reference from someone who also took dose dense AC, I'll share with you my experience.
My pre-meds in IV were Aloxi and Emend. These are very standard pre-meds that help to combat nausea. If you didn't get either or both, discuss this with your chemo nurse.
Prescription meds
Prochloperazine (Compazine) 10 mg. Take 1 tablet every 6 hours AS NEEDED for NAUSEA.
My first infusion I felt what seemed like slight motion sickness on my way home - but I was also reading my Facebook and in rush hour traffic in the Chicago area. So I stopped reading and felt better. A friend from church brought over supper and it smelled so good that I ate some mash potatoes and broccoli. LOL. Probably not a good idea. About an hour later I had more intense feelings of nausea but I never threw up. I fell asleep that night and never felt another nauseous moment throughout chemotherapy!!
Other prescription med
Lorazepam (Ativan) .5 mg. 1 tablet at bedtime to help sleep.
OTC meds
I had bought the Claritin also and had taken that that evening with the food. I never took another Claritin and had no problems with bone pain from the Neulasta shot which I self-injected.
Prescription Med
Dexamethasone 4 mg tablets also taken for nausea. I took these as directed: (2) the morning after chemotherapy; (2) at 5 pm that day; (2) at 9am and 5pm the following day. STOP
After discussing that motion sickness feeling and the nausea that first night with my chemo nurse the next day, she said that Ativan is also given for mition sickness and since that was the initial sensation that I described - then with the next infusion she would have me take an Ativan about an hour to hour and a half before I left my oncologist. I did that and reiterate that I had zero nausea at all for the rest of my chemo. (We even left directly from my last AC chemo to drive to KY the first night and then to Tampa the next day for my nephew's wedding. I had no problems whatsoever.
Water, water, water like you said you did! I also took a Minute Maid frozen lemonade to have there. Kind of like your slushy. And water, water, water at home.
IMPORTANT - I give you my meds and doses as a point of reference only. We are all different - so you can compare this with what you had and see how it might be the same or different.
Your chemo nurse should be your go to person. Mine told me from our first pre-chemo conversation on the phone that there are so many good anti-nausea meds out there that I should never be throwing up. She knew her stuff!
Hugs!!
Diana0 -
Diana - you are wonderful. Your descriptions are so clear and helpful.
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Diana - thanks for your info!!! I did call today & they are calling me in two new meds... a steroid for three days & another anti-nausea, not sure which. Hopefully it helps.
Question - how long after chemo do you wait to wash your hair the first time? Is it 2 days or 3? And I can blow dry as long as it's cool air, right?
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lighthouselady - so disgusting re: the nurse! I am soooo glad you spoke up. Keep it up!
gilded cage - yay! 1 down! Hang in there. You will start to feel better/stronger in a few days.
Others - thanks for the kind notes.
Kaydee - how is your hair doing now? I know you were there with me. Hope you are doing well! I was going to use herbatint - then googled reviews and read some scary stuff. I decided to hold off a bit longer. These greys are so gross and the 3 inch growth all around that is not my "coloured" look is gross too! But at least it's hair. I ordered a new fake ponytail. Can't wait until that comes in. Hoping that will make me feel better. Funny thing is, during rads yesterday, the technician commented on what lovely curls i have. I laughed and said, "boy do i miss what i did have, but this is still better than the alternative", but i then went on to tell her about pcc and how i saved what still remains and she was amazed. Had never heard of it.
Anyone know if there is a difference between Naturtint vs. Herbatint? Did everyone have a good experience who used Naturtint? I read also how they dry out your hair, which would be bad since my hair is already rather dry.
Some of my brows are starting to grow in. The lashes, oh the lashes. Where are they??!! I have read some horror stories on people not having either the lashes or the brows ever come back. Ugh.
Shipsgirl - have you started rads? I completed 3 of my 6 weeks today. TMI but the nipple is really itchy and sore. The rest of the area is fine so far, other than a lovely tan on that side, vs. the "good" side. Not too bad though.
curly0 -
3 days, and best not to blow dry at all.
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Hey Curly - just completed my first week of rads. I will have 25 sessions plus 7 boosts. So far nothing to report except a hot boob.
My eyebrows are starting to grow but no sign of lashes for me either. They will come - for both of us.
I had a change in my eyesight last week. Happened very suddenly - right about the time when my eyelashes left me. weird.
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Well I did it...after waiting and anguishing over my thinning, greying drab looking hair I could wait no more...I spontaneously walked into a salon and asked which stylist had experience with chemo patients and hair color. I found an angel of a woman who was so kind and gentle with my hair. She asked the other stylists what they recommend for coloring that does not have ammonia and other harsh products. An experienced older fellow dropped off two tubes of a wonderful color and suggested she mix them together to get the color I'm looking for. After close to 3 hours of coloring, washing, cutting and styling, my hair looks GREAT! I am so grateful to this woman. I feel like my old self and my hair looks full and full of body. She showed me how to gently blow-dry it and get the same volume. I just wanted to share...there is hope after chemo and cold caps.
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Awesome, AmyQ! And brave of you to just go into a salon where you don't know anyone. May I ask where you went?
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PatinMN I went to Salon Intrigue by Lake Calhoun. I gave my regular stylist a chance to find a color that would be gentle on my hair and without ammonia but that was over 2 weeks ago and never heard back. I couldn't stand it any longer, I looked like something the cat dragged in...seriously!
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