Cold Caps Users Past and Present, to Save Hair
Comments
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Just finished capping for 2nd infusion!
I will be skipping a week this time because I have a wedding to go to. That actually works out rather well. My veins need to recover and my platelets were a little low although I could still have the chemo. Also it puts me on a schedule to have my best post-chemo week while on vacation!
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Hello ladies,
I can't even begin to thank all of you for your love and support. It means the world to both me and my mom.
My mom had her first round of TC today and we used the cold caps. I freaked out at first when I realized just how difficult they were to put on when they're cold at -35 degrees. We pushed through it and by the fourth time, I had the process down.
We iced her fingers and toes during Taxotere to avoid loss/discoloring, etc. She also sucked on a smoothie the whole time - I heard it'll help with preventing mouth sores. She also used an electric blanket to keep the rest of her body warm. I wasn't aware that she could take ibuprofen before or I would've given her some. Definitely will as there were definitely some tears shed for the first 10 minutes. Being the over-protective and sensitive daughter I am, I felt like packing her up and ripping the cap off and leaving.
But...we pushed through with encouragement from friends.
Now the wait begins and I'm nervous and anxious all at once!
We'll definitely keep you posted! Thanks again for everything, ladies. Truly, you're all such a blessing and amazing fighters
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Congratulations ChelseaAshley- you made it and I'm sure your mom will do great! For now, try to relax- the whole process can be so stressful!
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Chelsea - Please give your mom our best. She's a trooper! We will all be pulling for her. All of us have been through it and made it with our hair. Reassure her that she will be fine and that cold caps do work. My long hair looks amazing now 11 months after chemo. Not a soul would ever know I had gone through chemo therapy last summer.
Definitely have her take something for pain ahead of time. My center suggested two Tylenol, or 1 Tylenol and 1 Advil. It's had about fifty women use cold caps, so has had a lot of experience with them.
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Chelsea, my heart goes to you and your Mom. My mother is my support and helper. I know it kills her to see me go through all of this, but she wouldn't be anywhere else. Know that what you are doing for her means the world to her.
Curly, how do you get the caps cold enough again during your 7 hour post-chemo. I'm switching to paclitaxol, which is a 3 hour infusion, and then have 5 hours post. We already had trouble getting the caps down to temp with my previous 1 hour infusion (plus 5 hours). Do you take them out of their boxes and put them on the ice as we find we have to do? Or do you have another trick.
My appt with my Onc yesterday was a bit of a breakthrough. She mentioned that the caps were causing some "resistance" at the cancer center and I told her I planned to write a letter. I explained to her how difficult capping is and how committed I am to keeping my hair (if possible) and making a difference for patients coming after me. I felt she got it and finally saw me as a person. She said she hopes I do write the letter.
Infusion #5 tomorrow. More than halfway through.
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Chelsea, my college age daughter is one of my cap helpers. It's been comforting to have her there and I'm sure your mom feels the same. I know it's overwhelming at first, but you got through the first treatment and it will get easier each time. Definitely suggest your mom take some pain meds...ouch, that first cap must have been cold without them.
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My 27 year old son is my capper helper and he is very efficient at it. I think he feels it's his way of contributing to a rather helpless situation watching me during chemo so I am very grateful.
I am so happy your mother and you worked it out for her first infusion. I completely understand the feeling of wanting to hang it up and walk away to protect your mom. I observe first hand how much this all upsets my grown children and I know they want to do whatever they can for me so every little bit helps.
Cancer is just evil and so awful but the good side is our family has become closer. Even my ex-husband has joined in with love and support. He drove from Wyoming a few months ago in a snow storm to be there for me when I came home from the hospital. He then prepared some dinners for my husband and me and put them in the freezer. If I had seen that side of him when we were married we probably wouldn't be divorced
Shipsgirl - I think the key for you is to have 16 or more cold caps to start with, otherwise you are right it's hard to get them chilled again in a short amount of time, however my rep said 3 hours in dry ice is all it takes so perhaps by the time the first few are used and repacked they will be ready towards the end of the 6 hours. Good luck
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Chelsea- congratulations- one down! You are a great daughter.
Amy- congrats on having your ex-husband join the team, my "wasband" also came for one of the capping parties. You are right, people just want to help and, aside from bringing flowers and food, this is something really tangible that they can do for us.
I wish everyone a good day with minimal shedding!0 -
Shipsgirl - ugh...sorry it's 3 hours of infusion. I found that the caps and bands don't cool any faster if just in ziplocs directly in the ice. Toward the end of the day, we are struggling to find caps that are cold enough, so instead of going in order, it is a free for all, and we just keep going through the coolers and use whatever cap is coldest. Sometimes the caps are exactly -34, maybe even down to -30 and the bands often are not as cold as needed, which may explain why my worst hair loss is at the nape/back of my head. What I do, that does help, is I keep an extra 3 slabs of 10 lb ice at home waiting for me. When we get back home to finish the evening off, we add those 30lbs into the cooler to help cool off the caps faster. This does seem to help.
Good luck Shipsgirl. Let me know how it goes.
xo
Curly0 -
chelsea - i'm sure your mom appreciates you more than she could ever say. it's so good of you to do this for her - and you came through like a champ! it was amazing to see all of the pros on this board rally - and get you through it. i share your appreciation for all the folks here who are always so generous with their advice and support.
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How did the PCCs work!?? I had Adriamyin and cytoxan...then four sessions of taxotere and the final drug just made the hair go kaput. But it is growing back and I a, four months out of chemo. Hope you did we'll!
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I see a lot of people who use the penguin cold caps, but I was wondering if anyone had experience with the elasto-gel caps?
Also, anyone here from Virginia?
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There were a few gals that used elastogels but Penguin Cold Caps have far superior results. I know they cost more, but if you really want to save your hair you might as well pay a bit more to give yourself the best odds to make it actually happen.
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AmyQ, you're right; more caps would work but that's not financially feasible for me. I only have 8.
Curly, I didn't think to try ziplock bags. It would be easier to handle than those darn cases that are so brittle when frozen. But if you say they don't work, then I appreciate your wisdom. We find that taking them out of the cases and laying them on the dry ice (short times only) to get them down to temp. It's just not reliable so we sometimes have to settle for slightly warmer temps.
Good idea to have some spare ice at home. Today we realized it would have helped to have extra. I'll definitely get more next time.
No probs with the new infusion. No allergic reactions, as I expected. The benedryl they gave me, along with the tylenol 3 and the Atavin, made me soooo tired. I got home and had to be awoken for each cap change.
I did not see the uppity woman that likes to scold cold cappers today. It's too bad because I was prepared today to be positive and work to connect with her so she'd see me as a person. Did have a number of people ask me about the caps though. And the nurse was from Glasgow where they offered the caps with cooling machines as standard practice.
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chelsea - yay for you and mom making it through the first one!
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My 10 blocks of dry ice were in bags from the store so easier to move. I always got extra pellets, about 20-30 pounds and scooped them into zip loc. I double bagged them with a 2 inch opening on top on opposite sides so the pellets would not fall out. You have to leave an opening or the bag will explode. If a cap was not cold enough my helper would use the pellet bags to pack around the cap for a few minutes and it usually brought the temp down 5-8 degrees pretty fast. She would check the caps a few min. before the switch and that way it was ready for the switch. I always threw away ice in the garden at the end of the day but it was worth it to not be stressed. My distributer gave me the ice free for the first 3 times and then charged $100 for the last one so it averaged $25 each time which I was thrilled with.
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schoolmom, that is a good idea, packing the little bags around.
We made it through yesterday. It ended up being a 9 hour day. Yikes. Once home, we did take them out of boxes and laid them on the ice (in bags) to protect them. Went through more ice than before so I'll need to get more next time. It was a little dodgy but we made it.
The pre-meds they gave me, along with the Tylenol 3 really knocked me out. When we got home, I was out like a light. They had to wake me to do cap changes. It actually helped make the day shorter for me.
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Shipsgirl congrats on getting through another one!
You will all be done before you know it and those caps will be on their merry way back to the company. I did a happy dance when our Fed-ex rep came to pick mine up. Visualize that day.....LOL.
Clesea I hope your mom is feeling okay? A few days after chemo are the worst. There are different drugs for the aches and the nausea, it is important to find the right one and stay on it. I hope she has minmal side effects.
Re the elastogels, I ordered a couple of those to check them out but alas, I have a big head and there is no WAY I could get them on, even before freezing. I have since donated them to our cancer center with the instructions and maybe someone else is using them now, I hope. The nice part about the Penguin caps is that they are adjustable for bigheads like me.
I wish everyone a peaceful weekend with minimal shedding and SEs.0 -
Sciencegal,
My mom is feeling horrible today. Yesterday I could hardly recognize her. She went to work but came home and went to bed immediately.
The first side effect was heartburn. Now she isn't fully with it - she's really forgetful and dingy. She forgets what she is saying and doing. She has horrible body aches like the flu, her tongue and throat are sore and she is so tired. She has already lost 3lbs but ate two cans of cream of celery soup. I was pleased with that.
Since she started on Wednesday, I am hoping she is more like herself tomorrow.
At this point, she is saying she isn't going back for another round.
This is so difficult but I am trying to comfort her and get through it.
Her oncologist won't give us pain meds - I don't really know why but I wish he would so she could get some relief.
On the bright side, she can finally shower today and wash her hair. I believe on the third day after using the caps you can, correct?
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Hi Chelsea,
That is good that she could eat soup without throwing up. The anti-nausea meds must be working. She can take tylenol, that is what they recommed=nded to me for the pain and sad I could also take before chemo and capping. I dont drink at all, it might be different for people who do have any liver damage.
She is in the WORST part, which is why I was thinking about her. Please let her know she is in our prayers. It is easy to think you can't do it at this stage but we have to wipe out the dang tumors. It is really the only way, in case she had any spread elsewhere in her body. I sure hope not, but she has to keep doing the chemo to be sure.
I had a nine CM tumor with spread to lymph nodes and the chemo has- so far- wiped it out. It totally sucks but is so worth it.
Sleep is the best thing- and lots of water. I got a cheap little bullet blender from target and made a lot of smoothies with greek yogurt, ice, berries, bananas, kale- they went down really well during chemo and helped with hydration. that is needed to flush away the chemo drugs- from hair follicles and the rest of the body, like kidneys.
Ask your doc what she can take for the heartburn. And for pain pills! I automatically got vicodin but never used them, I just used tlenol since I was also working full time.
GOOD luck and peaceful rest to her. And to you, what a great daughter. Please try to not stress too much, you are carryng a lot on your shoulders as caregiver.0 -
Chelsea, sorry your mom is feeling so badly. My first chemo was my worst - maybe she will be the same way. I also got heartburn so I took OTC Prilosec on chemo day and for a few days after each time and it did not bother me. As far as body aches - did she have a neulasta shot? I got horrible pain from that the first time but I was prepared with claritin and aleve the next three times and it was not bad. I was real "foggy" after my first chemo but not as much after the others. I just wrote down my symptoms after the first chemo and then had a plan for my next chemos and the side effects were much less. Good luck!
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My metallic taste thing kicked in on about day3 or 4 and lasted 7-10 days. I had trouble eating or drinking anything. I survived on popsicles....I ate a box a day. Water tasted bad....everything. I craved acidic food like cherry tomatoes in ranch dip....go figure. I think I would lose 5-6 pounds after each infusion but gained it back the 2 off weeks when I could take fluid again. After 4 treatments I was within a pound or two of where I started. Tell her to hang in there.
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Chelsea, my heart goes out to your mom. Healing hugs to her and you. I have had a HORRIBLE time since round one and like her, seriously doubted if I could make it thru another round. You hear all the stories about the bad days and then people come out of the valley by day 7 or so... sometimes earlier. I hope that's what happens for her, that she'll come out of the "chemo slump" after a few days. Unfortunately that wasn't the case for me. I had it all ... severe muscle and joint pain, constipation that led to an emergency room visit with impacted bowels (and I was drinking 3 liters of water a day, green smoothies, and taking probiotics in the lead up to the first infusion.)
This is particularly worrisome because I read that Taxotere is primarily eliminated through feces... not urine. Does that mean that this stuff was hanging around in my body ...cooking everything including my hair for a lot longer than for other people who are able to break it down and get rid of it more quickly?
Sciencegal- can you correct me if I'm wrong?
In the second week I developed a fever and chills, piercing menstrual cramps and breakthru bleeding and painful gum swelling and mouth sores. (Despite to soft toothbrush biotene paste and rinse and baking soda washes. Onc called in something called "magic" rinse yesterday)
Today, 12 days PFC is the first day I've felt halfway normal.
I am worried that my SEs were so severe that the caps might not work for me.
The hair under my arms and the hair "down there" started shedding significantly for me 11 days PFC and from what I've read that usually doesn't happen until day 14 or much later.
Anyway I've got a BOATLOAD of questions for my onc during my Monday appointment. I did the drug dosage math for my body surface area and believe my dosage may have been too high. .. Even if the office uses the DuBois BSA conversion formula, from what I've calculated, the onc plugged in the weight I was when I first came in before surgery ( onc did some oncotype calculations based on pre surgery tests thought I might not even need chemo!) and I was a full 15 pounds heavier.
That means I got more than 5m2 more drugs than recommended - and i'm guessing that means proportionally more pre-meds too which along with the zofran are the likely culprits for the constipation.
All of this, and I'm not even sure that BSA is the best way to calculate dosage. Sciencegal check me again if I'm wrong, but there could be a patient with the exact same BSA that would have a completely different reaction because of the way her enzymes ( cyp and dpd?) process the drug... And that varies greatly from person to person. Let me tell you after the past two weeks I'm sure I don't have any of those buggers processing anything!
I certainly don't want to go through all this and get underdosed. But I also don't want to be given more drugs than my body, in its current post surgery state can handle.
Ok that's a long read... It's been a frustrating time thanks for letting me vent.
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Kay I am sorry you are going through this. Yuck!
The infusion nurses and docs know we gain or lose weight so they should be weighing you each time you go for chemo. The pharmacy tailors your dose based on your weight that day and your height.
I gained weight so they had to "up" my doses midway, for instance.
It is true that most of the taxotere will be eliminated through feces, but while the feces are in your lower bowel very little gets re-absorbed from them, so even though you were constipated that drug wasnt nearly as much threat to your hair follicles or other tissues as it was when it was first circulating during the infusion.
Yucky I know but maybe some comfort????0 -
Sciencegal - thank u!!! Very comforting yes, I really appreciate it.
So good to know about the reabsorbtion. It make me feel like I haven't totally wasted my time or $. More incentive to push forward.
I'm hoping to have a good week ahead and hopefully that will give strength for round two.
You gained weight? That's fantastic - any secrets? Did you completely change your diet?0 -
Good! Yes, try to push through- it is so tough but definitely worth it.
Yes, I had the wrong anti-nausea drug at first (zofran) which didnt work well for me and caused migraines. I switched to compazine and, when taken on a regular schedule as directed, for me it completely stopped the nausea. No more headaches. Everyone is different.
So, when I wasn't at work I ended up sleeping and watching movies and eating whatever i wanted. My doctor told me it was not a time to worry about weight gain, just get through it. And I did!
I hope your SEs will get better. there are many different medications these days. Please be sure to tell your doc how you are feeling and he or she can try a different medication if needed.
Hang in there!0 -
Kay,
Hang in there!!! I lost about 8 lbs after my first infusion but I gained about half back. I wasn't really eating because of the lack of tast but when it came back I started eating again.
Compazine also worked great for me but everyone is different.
Don't get discouraged- you are going to make it- with great hair!
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For the hairy tongue, I too turned to juice popsicles. I also "discovered" the San Pelligrino Blood Orange drink. I couldn't drink water because it tasted horrible but I found these drinks cut through the hairy tongue quite well. It was a good way to stay hydrated and I'm sure that is a big reason that my last round was so much better.
I too find that acidic tastes the best right now. Tomato and bacon sandwiches go down really well!!!
To those who are struggling, hang in there. The first round is the toughest. Be sure to write down all your symptoms and your Onc can help deal with them. My heart goes out to you because I remember well what it's like.
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Sciencegal, tmb, ships girl - this is all sooooooo reassuring. Thank you so much. Onward and upward - WITH HAIR!
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Chelsea And others starting chemo and getting discouraged, when I did AC+T in 2007 the first time was the worst. Then in subsequent rounds I kept waiting for it to be that bad and it never was until I switched to Taxol and the first was worse than the others. I recently learned why, the first dose is called a loading dose and it is more medicine than the give you on subsequent doses. So the odds are it may be easier next time.
Compazine made me feel like I wanted to crawl out of my skin. I thought it was the chemo and I endured it for 3 days until I told my doctor, and I felt stupid that I didn't have to feel that way. I was uncomfortable sitting, standing, laying down and very agitated. If you don't feel well talk to your onc -- they might be able to adjust the drugs. I can't remember what I took instead, but I remember it was $100 a pill (but insurance paid for it).
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