Cold Caps Users Past and Present, to Save Hair
Comments
-
Portland ....I suggest you stay at center and keep changing caps there. Rotate caps in ice as you use them. I tried using masking tape with the cap numbers on boxes but it came off. I wrote the numbers on index cards and put them in the box so we could see them. no way I could change myself and do it right. See if you can get a second person to help.
0 -
Thanks, Schoolmom, Dancer and Marsha! I am scheduled to start treatment around 12:30 and the offices close around 4:30 so I can't stay there an additional 3 hrs. Also, I thought that morning I'd do pick up the dry ice. Would it keep if I picked it up the day before? Then maybe I could start earlier. I'll see if someone can help after the chemo - I'll have to pull off the freeway at some point to change them and then when I get home. Whew! I wish I had a husband to help, but he passed away from adenocarcinoma. ;-{ I'll see if someone at Breast Friends a local support org where I found my initial helper can assist or maybe at that point in the day one of my Angels can come. Sooooooo complicated!
0 -
Portland, I have the dry ice delivered the day before. They always deliver in the morning the day before, and the ice is just fine the next day. Don't try to pick it up the same day, as you will have enough going on and it will be an exhausting day as it is. Definitely try to find help on the route home. Have someone else drive if you can because you will be very tired.
I am separated and also don't have a hubby to help out. Thankfully I have some great friends/support that have come to each Tx. I can't imagine what i would have done without them. We have found 2 helpers are best because it's a lot for even one helper. Please don't try to do this yourself.
best of luck,
curly0 -
It is a challenge to get up to speed on the process and get help, etc...but it was oh so worth it - at least to me!
I picked up my ice the night before around 4:30 p.m. Had to get 20# extra (100# total) after the first tx when I realized the caps were almost not cold enough near the end of the 4 hours post last chemo. The extra gave me more peace of mind. (My chemo was supposed to start at 8:30 am, but in reality b/c of how slow my office was, it could be 10 or 11 a.m. before my first chemo drug was actually infused, so we weren't done with the caps until 7 or 8 p.m. Not everyone has such a long day.)
0 -
Portland, welcome to the site. As you can see, it's filled with wise and courageous women. I couldn't have done this without them.
I find cold capping very tiring (even though my helpers do all the work!) and wouldn't recommend driving afterwards.
The dry ice keeps very well. The secret is to prevent exposure to air. I pick mine up the day before and put it all in one cooler. Then I cover it with a blanket. I find I not only have enough ice to make it through nine hours of capping, but then my brother has had plenty to take the leftovers camping with him. I always remind cappers to tell their dry ice supplier what they're using it for; often the supplier will give a nice discount.
All the very best to you.
0 -
Portland - Can you talk to your center and reschedule for an early morning time? Explain that you need it because of the caps. All cappers at my center were started at 8:30 am to allow them to stay on after their infusions.
I was tired afterwards also and could not have driven home safely. More than that, I felt slightly out of it due to the meds. Safety is a serious consideration. Have someone else drive you, especially as you have such a long drive.
Good luck!
0 -
I got my ice the day before and also put it in two coolers and covered with towels and blankets. The ice lasted all day the following day and I threw chunks of it out on the lawn when I finished in the early evening. My helper friend was exhausted on #2 when she did it herself. The #1 and #3 we had an experience CC that generously came and helped. It is very tiring. I was in charge of the timer and reminding them to wipe the caps down with a towel before placing on my head to prevent frostbite. I told them if it was snug enough and where it felt loose. You have to verbalize and talk to your helper/s.
0 -
Hi Portland I wish I was there to help you. Stuck down in Cali doing radiation.
COuld you maybe hire a college girl to help you and drive you? If you cant find anyone else. I sure wish you luck.
For me, it was sure worth all the drama.
Hugs!0 -
Thank you all for your sage advice! I think it's too late to change my chemo time at this point but I will see if I can get rides as you think it's important. I'll try to have the next sessions scheduled earlier so I can stay there for the whole time I'm capping. I don't want to jeopardize the results by not having the help I need but I just don't have a large support system. Those I do have are pretty amazing, though!
0 -
HI Sciencegal - thanks for your kind thoughts. I was a scientist myself in my former career - where are you? I was at NASA Ames.. ;-} Wishing you all the best with your radiation!!!
0 -
My chemo nurse said I could not stay after chemo because they need the room for other patients. They have not had anyone try cold caps in quite some time. Before you assume you can stay afterwards you might want to ask.
I noted that it took 2 hours to fill my herceptin order (the only infusion i took) and I asked if that was normal. I was not waiting on labs. She said she couldn't control how long the pharmacy took to fill the order. I asked if when I came back for chemo if I should wait until the order comes back to start cooling for 50 min and she said they couldn't hold up that long because others need the room. I know it sounds unreasonable but she was really nice about it, it's just no one has ever asked this before so of course they don't know how to deal with it. I said that maybe if we explain to the pharmacy why I need it in a certain time really nicely that they would be willing to help. I'm not letting that chemo start until im ready, but my concern is i will be cooling longer than i need if the drugs arent ready. It will be interesting to see how all this goes down.
Must. Have. Faith0 -
It is better to cool too long then not long enough. You may need to check but the important cooling is right before the Taxotere starts. I did not cool in the premeds but started figuring out the timing when I knew the taxotere was next. I did not let them start the taxotere until I had cooled the exact time. You dont want to go past the 10 min into the cap because that is the optimum cooling. I am trying to remember but it seems that I had to stall the taxotere a couple of times because of waiting on the nurse to come change my bags. My helpers would follow her around and give her the countdown to the min. when I needed the taxotere started. It was kinda funny. Three minutes, Laura......two minutes, Laura......it always timed perfectly that way. Then you can relax and just keep changing the caps according to your protocal....usually every 30 minutes. Good luck
0 -
Well finally made an appt for a haircut with my girl. August 6, right before going back to work. My hair regrowth is crazy all kinds of lengths since finishing in January. Regrowth from 1/2 inch in some places to over 3 in other places. It goes to show your hair continues to grow during chemo. Still very very thin from my original thickness and length but I am hoping she can do some layering to help make it look fuller as it continues to grow. Going back to Arizona to visit my 85 year old parents in 2 weeks along with my brother and sister. I havent seen them since last summer so nervous about the comments, especially from my mother. My dad told me not to worry about losing my hair that it would grow back.
0 -
schoolmom - I think it would be fine for you to have your hair trimmed and shaped before you go to see your parents. It would be over five months since you finished chemo, so there should be no problems. I trimmed my hair myself at least three times after chemo and before going to a hairdresser.
My hair is as you described. All different lengths growing in and while I am thrilled to have it, I am having trouble managing the new hair as it fills in between all my other hair. My new hair seems to have a bit of a wave which I have never had before, not real curls, just soft waves.
I ended up slowly shortening my hair from what is shown in my picture to just below my shoulders. It looks very nice. I did that because I experienced a lot of breakage in the first few months after chemo ended from my over-bleached hair. The breakage left my hair looking thin in the longer parts, and shortening it made it look fuller. Not a soul would guess I had been through chemo last summer unless I told them.
0 -
Hi all,
Getting ready for 3rd chemo tomorrow and have to say I am already a little sick with anticipation- definately an Ativan day. Picking up my ice today. Still have about 90% of hair, but I did have a lot of breakage so I think it will be shorter after everything is said and done.
While I have the thermometer, my helper (my mom) can pretty much tell by touch if a cap is cold enough just by the amount of kneeding it needs. After the first few, I don't really bother with taking temps anymore- too cold is always better and my mom can pretty much tell if it is too warm.
0 -
How do you find out how long you are supposed to continue capping after chemo? I'm on taxotere and cytoxan.
Also, some of you have said you put the caps in ziploc bags. Do you transfer them to the boxes when you put them on the dry ice or leave them in the bags in the dry ice?
I'm a little stressed about all of this as I had requested they be delivered today so I had tomorrow to practice, but they won't be delivered until tomorrow afternoon and I have plans in the evening to go to a nice restaurant with a good girlfriend for my Last Supper before my taste buds go wacky. So much to do/learn and not enough time!!!
0 -
I just wanted to add that while you can't stay in the infusion room or chair because "time is money" on those, for the hospital, most places have nice waiting rooms where certainly they can't prevent you from capping. We did that once when it was rainy and there was a big traffic jam, just stayed there to finish. Look for an outlet to plug in the electric blanket!!!
Also you can put on the caps as early as you want- as mentioned longer is better than not enough. We applied them pre-chemo in the waiting room too- quite the production and drew a lot of curiosity from other patients.
The only problem is that once you go in to start your infusion they need to weigh you- and the cap adds FIVE pounds. You can give the nurse one of the frozen caps in the box to weigh if needed, or they can just deduct five if they trust you.
It seems like a lot to organize but after the first time it goes better. Good luck Portland lady!!!
Tmb good luck with your ativan day. If you have 90 percent of your hair at this point you are doing everything right. take a deep breath.
We will be in your pocket tomorrow.
This is going to be over before you know it!
GOOD LUCK!!!!!!0 -
PortlandLady - It will be fine. You really only need a few minutes to practice. You just want to make sure your helper knows how to fit the cap, and you want to know how it feels so you can verbally help. I remember it feels like so much, but before you're done your first infusion, you'll have the routine down.
Do you have Ativan? It really helps to be calm. I find that I deal with the first cap much better if I'm relaxed. My helpers are my mother and brother and you know how families can be. I've made it clear to them that this needs to be calm and free of outside worries. They have been great.
0 -
Time for an update...
I've experienced my heaviest shedding period after my 4th (and final) chemo. I'm almost 3 weeks PFC. It seems to be shedding mostly around my ears where I fully expected to lose hair, just thought it would happen earlier. It's like a delayed reaction. I still have plenty of hair but I hope this doesn't last too much longer.
I met with the radiation oncologist today and got some good news. I'm going to have a shortened radiation course of 16 regular treatments and 5 boosts, shaving about two weeks off my treatment time. And.. he's fine with letting me delay the start of radiation until the last week in August. So I can take a family vacation, take my daughter back to college and just enjoy the rest of the summer before I start.
I'm feeling pretty good, just a general lack of energy. I also developed a pretty bad chemo burn on my forearm from my last treatment. It's not pretty and I hope it fades a lot and quickly. Other than that, no complaints. I got pretty lucky with chemo and didn't have major side effects.
Good luck to everyone starting the caps soon. It's worth it.
0 -
Now for the not so good news. I've read some comments here where people had a difficult time getting their deposits back. I was hoping for a better experience. Unfortunately not. My caps arrived at the Michigan depot on 6/27. I know because I received an email from UPS that they had been delivered. So one week later I sent a short email to Pengiun Cold Caps asking when I would receive my deposit. I have yet to receive any response to my email. Instead, yesterday they charged me through paypal for next months rental. So now PCC is holding almost $1,200 of my money between the deposit, the prorated portion for the month I returned the caps and the additional month they just charged me for. I'm sure it will get resolved eventually. I'm just not up for the battle right now, and shouldn't have to battle to get my money returned. This company has a great product, it just seems so disorganized and very poorly managed. They should sell the technology to a company that will invest heavily in marketing and education and push for FDA approval.
0 -
PortlandLady, Your instructions from Penguin should tell you, but I think most everyone was instructed to cap for 4 hours afterwards.
Good advice from some of the others...request an earlier start time and find another spot at the hospital to stay and cap if needed. Don't forget who is the boss here, YOU. These centers make a fortune on us, they should be very cooperative.
I remember feeling so overwhelmed with everything needed for capping, but it all works out in the end. Just make sure you are prepared and follow the protocol.
Marsha1970, Please do not let the pharmacy or the nurses blow you off. Timing is important and you are spending a lot of money, not to mention time on using these caps. They are well worth it!
0 -
Laura - If the instructions are the ones Geralyn emailed then I think it's 3 hrs post infusion. If there are detailed ones that come with caps, I don't have them as they won't arrive until tomorrow.
Shipsgirl - Thanks for the reassurance. I would love to take an Ativan and have some here. Just concerned that I'll be so calm - or loopy - that I won't be able to help keep on top of the capping schedule. But i am VERY nervous about the chemo!
Oh, and to anyone: Can I store the frozen caps in the dry ice or do I need to be sure to put them in the boxes?
Thanks to all - Thursday will come too soon..0 -
Keep them in the boxes - if stored in dry ice they have a higher potential to break/crack. And only put them in their boxes in the dry ice about 3 hours before you need them. Otherwise again higher risk of breakage, and they will be rock hard frozen. Even at 3 hours they are super frozen! Take your first one out about 20 minutes before you need it - let it warm up to the proper temp and knead it, etc -pay attention to how long it takes to get the cap warmed up to the right temp. Then you know how long it will take to prep each cap.
As the day goes on and the dry ice starts to evaporate and the caps start getting reused in the rotation schedule, you won't need to take them out quite as far ahead of time - they won't be as cold to start with as they are in the morning. You will find a natural rhythm as to how to time all this, but yeah...it's a bit nerve wracking until you get your routine down. But we've all done it, and you will figure it out!
0 -
Here I go. Stomach churning but I know I have to push through.
Also seemed to have picked up a cough from my son- I swear I am never sick but this compromised immune system is testing me.
0 -
Good tips Dancetrancer!
One other thing is to cut your moleskin to the shape of your forehead in advance (leaving the peel and stick backing paper on of course until needed - it takes some time and you dont want to put it too close to the hairline or it pulls hair out. I made paper templates for each half of my forehead and then re-used them for new moleskin each time.
Also take that infrared thermometer out of the package and practice with it on a tray of ice or something. We opened our package in the chemo room with all the activity going on and had to read directions prior to applying the first cap!!!
GOOD LUCK!!0 -
TMB good luck! You will rock it. I hope it isnt a cold, you dont need that right now.
We are with you!0 -
portland - glad you are looking into getting a driver. if benadryl is part of your pre-meds you could definitely get a little drowsy. i certainly do. And, like shipsgirl, I find the capping exhausting even though I'm the one just sitting there.
schoolmom - have a wonderful trip! wacky growth is still growth - what an encouraging sign. i'm sure your new cut will make you feel great
hortense - how long after chemo did you start doing your own mini-trims? how often before you got a cut-cut?
tmb - right there with you on the nervousness. my 3rd infusion is Monday and I'm ALREADY dreading it so I completely understand. I'm just trying to bear down and push through. You've got 90% of your hair and that's fantastic! hold on... you can do it.
0 -
jc254 - that's fabulous news about shortened radiation. wow! why did they decide to shorten it? man, i would love to get some good news like that...
0 -
Kaydee - I started trimming 1/2" at a time by myself about ten days after my final chemo because my hair looked so scraggly - I was experiencing a good deal of breakage brought on myself by my stupidly lightening my roots six days before starting chemo.
I'd wait about three to four weeks and do it again. My hair was growing very quickly, easily 1/2" a month judging by the length of my natural colored roots compared to my lightened hair color. I figured that if I took off approximately what was growing in it wouldn't change the pressure on the roots that much. Those 1/2" trims made my hair look much better.
I had my hair shaped by my hairdresser between 5 and 6 months after my last chemo, but honestly think I could have done it much sooner. It made such a difference in how I looked, and consequently, how I felt about myself.
If you need a trim and a hairdresser usually does it for you, you might consider having it done by one, but limit the trim to no more than 1/2" each time based on your rate of new growth. Try not to do it too close to your final chemo when your roots might be very fragile and react to any pulling by a comb. When I did it at ten days, I simply lifted the ends of my long hair so that there was no tension and trimmed. It wasn't a great job, but it was an improvement.
Speak to the person ahead of time about what you are doing with cold caps and the need for specific hair care protocols. I found my hairdresser was fascinated and very willing to work with me. Also, stress, as I did, that wash water has to be cool to cold, and that the hair has to be handled with extreme gentleness every step along the way - shampoo patted on and gently squished before being rinsed out gently, with no rubbing, no pulling or any sort of stress on the roots. I even brought my own shampoo and conditioner the first few times. It was blown dry on low. Actually, I was handed the drier and dried most of it myself with the hairdresser gently putting on the finishing touches. After a few months I am back to normal, although I still ask for gentle treatment and coolish water (because I like it).
Good luck, and I hope you are feeling reasonably well.
0 -
hortense - very helpful info re trimming. I may do that.
Last chemo is tomorrow - yay. Thought i'd share a chuckle. I went in for radiation prep (tattoo, measuring, etc.) today. The nurse looked at me and asked when will i start chemo. I said tomorrow is my last. She said "but....you have hair????" lol...told her about the caps. She was fascinated. Asked lots of questions. Then the Dr walks in a short while after, starting out not about rads, but asking tons of questions about the caps and telling me how happy he is for me. Wow. What a difference. How come the chemo medical team could care less but the rads team is so happy and inquisitive? The nicest part was the nurse said she thought my hair looked so thick and i said - really? Because compared to my normal look, it is crazy thin. She says, well, you must have had a lot of hair then because it looks thick to me! Well, that was nice.
Am a little, well, a lot, more stressed than usual. The ex is causing a lot of trouble. How lovely during such an awful time. Trying to calm myself down but he has a knack for getting under my skin. The legal battle is brutal to deal with; especially now.
Anyway, at least tomorrow is the last Tx. Not looking forward, but it's the last. Can't wait to have my arm back for a proper shower without a picc line.
Then I will be asking questions of you lovely ladies about after chemo hair treatment.
xo
Curly0
