Cold Caps Users Past and Present, to Save Hair
Comments
-
You go DeesDaughter!
Here's to a head full of hair for the Summer.
0 -
Thank you Arlene and Deesdaughter for sharing your experiences! Very helpful to an anxious newbie!!!
0 -
Deesdaughter...he is to a summer full of hair blowing in the wind!!! Glad you knocked the first tx out! You are on your way!
0 -
dancetrancer: in the infusion room, the little bit of fumes will not be harmful, they''ll evaporate (so to speak). We had our coolers in the car overnight, and always cracked the windows and let the car air a bit before getting in to drive.
0 -
slak: Good for you for thinking hard and making the the best choice for you. When your hair does go, just remember that it was your choice. That in itself is powerful! -- you decided that it could happen, it's not something just randomly happening to you. I hope your treatment goes smoothly -- caps or no, hydrating and exercise are two of your best friends during this process for detoxing and having minimal side effects.
Cheers,
Susan
0 -
Hey all,
I spoke with Geralyn yesterday for some training. I asked her about the 10 minutes into 3rd cap start time for chemo discussion we had. She actually said you can start any time post the 10 minutes into the 3rd cap - aka you can start any time after the 50 mins of pre-cooling.
0 -
DeesDaughter, congrats on making it through the first tx! I hope you are doing well. Please rest up as much as you can and hydrate, hydrate, hydrate. I'm glad the caps went well. I'm really glad you decided to get the gel bands. They go the extra mile in terms of giving you full coverage. I wish they didn't cost more, but def worth it. Try to relax during the waiting period. It can be stressful worrying about your hair every day so try to keep a positive attitude. I found that I was able to relax a bit more after the third tx when I saw that my hair was still hanging in there. Also, do you use an electric blanket? That has been invaluable to me in terms of helping to keep me warm while wearing the caps. It was a great tip I received from the ladies on this thread :-)
0 -
Hi all, I am 5 weeks PFC and have kept all of my hair. I am glad to see all of the new women here using this technology. I did want to chime in and gently assure you gals having tough side effects that exercise does not always mean minimal SEs from chemo. I am incredibly active, was in awesome shape going into chemo, worked out all through chemo, but still had some tough SEs. It really depends upon the person and their physiological reaction to the drugs. If you're finding it tough right now, please be assured that there are active women out there who found it challenging.
Also, love the idea of lending coolers & thermometer to others...if anyone lives in the southern NH area and needs these items, please PM me and I will be happy to lend them to you!
0 -
Thank you so much for that reassurance ckk. I am very physically fit, so I could see myself being hard on myself if I end up with lots of SE.
BTW, I cannot wait until the day I can say I'm PFC! I luv that term!
0 -
dancetrancer, another woman on this site has a great quote: "You just have to make it to the other side. It doesn't have to be graceful". This process can sometimes be very difficult, and we have the added stress of the cold caps on chemo day. It's hard to predict how you will fare through it all, but rest assured that you will make it to the other side before you know it, probably with most of your hair. Go easy on yourself, and good luck in your journey.0
-
I really do appreciate you PFC ladies chiming in to remind us that we will get through this and that there is LIFE on the other side. Having still months of chemo and then radiation and still Herceptin, it's sometimes hard for me to remember that. However, it does do a lot for my sanity to know that I am going through all of this with hair. I know that not everyone can or wants to go through the expense/burden with the caps but I am still glad that I can/did.0
-
hey there dancetrancer,
Today markes 11 weeks PFC - and I went skiiing to MT last week with my family. After two surgeries (one bmx and one repair of a ruptured blood vessel a week later) and four rounds of chemo since october, I was fit enough to ski - a pretty demanding sport - especially throwing in the altitude.I wouldn't have been if I hadn't kept up my workouts during chemo. My onc told me not to plan the ski trip because she didn't think I would be able to handle it - I've got a check up with her next week and I can't wait to share the pictures. Oh - and having the wind in my hair as I skiied was a huge bonus! I'm still shedding a bit - and I shed a lot after chemo - but I never went bald and the hair is coming back now - with a vengeance! good luck - keep moving - you'll be glad you did later!
Lucky
0 -
Dancetracer I was back to teaching aerobics a few weeks PFC and the best part was since I had hair my class did not even know I had bc or chemo. I could have taught during chemo but my med onc would not let me. I did an hour on the elliptical five days a week through all of chemo. Never missed a day. Exercise really helped me...so did caps. I felt normal. I hope all goes well for you!!!
0 -
To all recent and soon to be PFC ladies....I'm a little over 14months PFC.... I shed from Feb-July 2011...my last chemo was Jan 13...I thought I might lose my hair, but as Lucky said...just when you think it won't stop it does, no one but you can tell, it does feel thin for awhile..and then BAM...it's growing back and you see it around ears etc....have faith!
On a side note, I have and had oily hair...washing only every 4-5days really did a toll on my scalp...scales, build-up..took a long time for me to get it back to "normal"...if this happens to you I would do as Frank recommended to a few...add a tablespoon of apple cider vinegar to your PCC non sulfate, paraben shampoo....it helps with the buildup ....and scaling....
I still can't believe how many are using the caps now...and how much success there is... I am so happy I used the caps!0 -
cck, LOL, love it!!
Thank you everyone for the wonderful stories and encouragement! Such amazing stories! It means the world to me! I'm reading these comments and stories outloud to hubby, and it is helping him, too.
0 -
dancetrancer, my husband had the whole cap rotation/temp thing down to the slightest detail (with charts! he's an engineer). If your husband needs any help or encouragement, PM me and we'll get them together via email or phone.
0 -
ckk, that is a RIOT! Guess what, my DH is an engineer, too! LOL!!! He wants to sit down and go over the schedule with me. Gotta love it. Thank you so much for the offer to have him speak with your hubby. I encouraged him to do that (since I have so much support, I want him to have the same), but he's relucant. You know men and their feelings. Not "talkers", especially to other guys.
0 -
OK good news ladies....My DH is an engineer too and I kept my hair. Thank God for engineers!!!! There should be a new job/career in this.....cold cap engineer! LOL!
0 -
Wow, you ladies gave me a great idea! I was trying to come up for a title for myself. How do I describe what I do? An instructor, helper, expert? I like Engineer. I think I'll go with that one!
0 -
To the women who are PFC, did you get the extra gel straps and did you wear the caps every day for an hour from your freezer? I did not get the straps, I have four treatments left. I am not shedding, but sounds like that came later for most. Just thinking, should I get? I honestly don't remember being offered them. Unless, I'm confused. I was offered bands for my eyebrows which I did not get. I just don't remember the bands for thick hair being described the way it is on this thread, if it were I definitely would have added them. I think I thought the bands for thick hair were extra black velcro straps.
0 -
Lol about the cold cap engineer! My husband is not an engineer, however I'm sure he will accept the title and wear it proudly. I found having my husband there as my "cold cap engineer" has been so beneficial and it gave him a job and a place in all of this. I can see how proud he is to be helping me and I am so happy that he feels he has a purpose and some control in all of this.
0 -
mdg, I love it!!! Cold Cap Engineers - new job title! makingway - perfect!!! I was also thinking of asking for helpers and was going to put a call out for "cold cap angels"...just another thought for you to ponder!
Hubby was so cute last night. I was trying to tell him he doesn't have to miss work and come to all of my infusions with me (to take stress off of him). He said he will be making every effort to be there for every one, and if work gives him trouble, they can "pound sand". Oh, I love that guy!
BTW, my onc is very, very nice, but he gently told me that I am most definitely going to lose my hair. He says he has seen people try various kinds of cold before, and they all lost their hair. I just "Yes'd" him and said, I know, but I have to try. He has no problem with me trying. Secretly I was thinking "Gosh, I hope I can prove you wrong and bring you over to the other side!" I figured there is no point in arguing, the proof has to be in the pudding, er, hair.
0 -
I've found, for some reason, men really pick up on the cold cap changing technique really well. Maybe because it was invented by a man and they just understand it better. At my first infusion, my husband got the hang of it really quickly. It made me feel so much better that if worse came to worse, he has me covered. I ended up hiring a local couple who are affiliated with Penguin to come to my infusions and change caps for me (remember, my infusion center has the caps and freezer on site). While it is an additional expense, I decided to do it because (1) i knew my husband may not be able to make all infusions due to his work demands (2) it became clear quickly that my prospective cold cap team (mom and a couple of girlfriends) were not gonna cut the mustard...lol...the motivation and commitment just weren't there (3) I decided to go with experience - they know the system and I wouldn't have to go up the learning curve - and less stress - all I do is relax while they change my caps. The funny thing is guess who does all of the cap changes for me.....the husband! I tell you, MEN seem to be our friend when it comes to the cold caps. But makingway is definitely blazing the trail for the ladies as a cold cap engineer :-)
Dancetrancer: smiling at the story about your conversation with your onc. We all get that speech. They mean well. But I have no doubt that you will do well with the caps. Like you said, proof will be in the pudding with the hair. He will be pleasantly surprised to see you with hair. Don't be surprised if he tries to touch it. My onc even asked if he could grab my roots :-) Ofcourse, I obliged :-)
0 -
Love your post victorious! LOL!
0 -
Victorious2-I know what you mean by some people, 'not gonna cut the mustard'. LOL Not all people-men included, are capable of following instructions-no matter how many times you explain it to them...That's hilarious that your oncologist wanted to grab your roots! I've never heard that one before. I would've said, "You can look, but don't touch"
dancetrancer-Maybe you can ask your doctor if he'd like to make a money bet. Then when you save your hair tell him that instead of paying you the money he owes, you'd like him to accept a freezer donation from the Rapunzel Project, so that others may use the caps. What do you think, is he game?
0 -
brax-The bands you referred to as, 'eyebrow bands', are the headbands used to cover the areas that the cap might not. The straps are what are used to secure the cap tight to your head. They usually supply you with 2 black straps. If you have thick hair they will provide you with an additional yellow strap. The color of the strap doesn't make any difference-they are both the same material. It isn't neccesary to wear the caps daily when not in chemo. Some will wear the caps once or even twice a week for an hour or two at a time, others don't want to even look at them. It depends on what you can tolerate. A good time to wear them would be when exercising or when having hot flashes 0
-
DeesDaughter - my 31 year old daughter had her 1st treatment at Peachtree Oncology on Mon., March 26th. She might be 110 lbs soaking wet, and she felt naseaous every time we changed her cap (14 changes). They finally shot Phenegran into her port, which knocked her out. My other daughter and one of her friends were helping me with cap changes, and we had to wake her up for the last 9 cap changes, and do them in her bed. Her girlfriend climbed onto the bed with my daughter, and my other daughter and I assisted. My daughter is tiny, but it was still difficult changing caps because she could barely wake up... like dead weight. Has anybody else had this problem? I'm a little nervous because she will be getting a bigger dose for her next treatment, and I assume she will have the same or possibly more nausea.
Any feedback or suggestions would be greatly appreciated. On the good side, she had a private little room across from the biomedical freezer, and Peachtree didn't limit the amount of people allowed in the room. We loved the Peachtree Oncology staff... because they were all so helpful and friendly... and willing to help in any way. That made the whole experience worth it. One treatment down, and seven more to go. Just wonder if anybody else got so naseaous that they had to have an empty trash-can in the bed with them?
0 -
makingway, maybe if I knew his personality better, I'd do that, but for now...treading lightly!
0 -
Victorious, that is hilarious that your MO wanted to grab your roots, esp since he is very familiar with cold caps and even lead a study proving teir effectiveness. I have my father helping me with mine and yes, he is an engineer. He is very methodical about setting up the machine and making sure the cap is on correctly. I am an engineer too but I don't know if I would be as methodical as he so I think it might be a guy thing.
0 -
portishk-Some women take Ativan. In addition to reducing anxiety, it also helps with nausea. It is also a good idea to take a pain reliever of some sort at least an hour prior to wearing the caps. Some of the pain relievers which woman have used are: Tylenol, Ibuprofen, Vicodin, Percoset. Talk with the doctor to ensure the pain medication would be okay.
0
