Cold Caps Users Past and Present, to Save Hair
Comments
-
cmksocal-Yeah! Almost done
CVille- What did the dermatologist say?
Any Cold Cap users out there need help? I'm willing to go anywhere as long as my travel expenses are covered.
0 -
For those of you in SE Michigan, while my sister is unemployed, she is happy to help out! Of course, she is hoping that won't be for long....
She's a nurse and very strong, so I was always securely strapped in correctly
0 -
Good luck to all the new people starting out! I did taxotere, carboplatin and herceptin X6 and had great success with the cold caps. I didn't use anything on my hands and feet. I am sorry about that now because the taxotere did give me neuropathy to my hands and feet. It feels like slight frost bite to my finger tips and the bottom of my feet. My doctor said it is nerve damage and may be permanent. So, if you have something that may stop that it sure would be worth a try.
If anyone is in Long Island , NY and needs some help with the caps I would be willing to give anyone help.
Good luck everyone!!!!
MaryEllen
0 -
Hello Emster and Michon!
Nice talking to both of you's today! Glad you's are both going to use the caps! Looking forward to working with you's. As you can see there are lots of women using them now and great results. Michigan is growing!! Yeah!! Just remember that we are all using the Penguin Cold Caps which are different than the elasto -Gel Caps. Which I haven't spoke to anyone who actually used the elasto gel caps and don't know what their results are. It would be interesting to find out. I just worry if the results are not as good as the Penguin Caps. those I know for sure have great results because of Frank Fronda and his intense research.
For those that got a scab on their head- I just wanted to say that I to had a small scab on the top of my head during my chemo. I just left it alone. When I washed my hair I combed it out when it got softer but it came back a few times but eventually went away. I never lost my hair there and never went to a doctor for it. I just thought it was dry and coldest part of my head from were the cap was the tightest pulled down from the strap. Whatever it was it went away and I never lost my hair there.
Good Luck to All,
Geralyn (gmp300)
0 -
Golfergirl
Would your sister be interested in coming out to Crittenton? Let me know... I can help:)
Thanks again for everything
gmp300; You are awesome!!!:). looking forward to meeting you. thanks for all the pep talks
Emmy
0 -
shadow2356,
I also had some mild neuropathy on the bottom of my feet. One thing I found that really helped was acupuncture. To those just starting chemo, this also helps with a bunch of nasty chemo side effects like fatigue and nausea.
0 -
Last chemo yesterday. I'm ready to pass on the whole set of Penguin Cold Caps that was kindly passed on to me by sebm9. There are 14 caps, 3 coolers, a pair of gloves, a thermometer, some gauze and moleskin and vaious sizes of pantiliners. I would be happy to drive the whole thing over to you, do some training with you and your coldcapper, and cheer you on. I'm willing to travel about...mmm...150 miles from Santa Cruz.
0 -
Congratulations ordinarymammal! You are 2.5 weeks head of me. I can't wait to finish. I do think my hair is starting to grow/fill out again. While my ends look pretty thin, the skull area seems to be thicker.
Now if the darn neuropathy would go away.....
Colleen
0 -
Congratulations ordinarymammal!!! wahoooooo! Can you hear me celebrating for you in Berkeley? You did it! Seems like just yesterday I was handing off everything to you! Can't wait to hear how your tumor board presentation went and what the staff think of the PCCs.
Susan
0 -
Congrats ordinarymammal!! I'm glad for you, that it's behind you now. I wish I knew of someone who could use the caps. I went to a BC support group at the hospital last week and told them about the PCC. Maybe someone will ask next week when I go.0
-
Hello~ Thursday's chemo went well (Carboplatin and Taxotere). Having bone pain from the Newlastic Injection for the white blood cells, but I am hoping that is shorted lived. The Penguin Cold Capes went very well!! I was pretty worried if I could tolerate them and everyone so far has been right - after the first two you don't really even notice them. I had a small eclectic blanket (I am sure I was the only person in Arizona with one temps were 110) - but it really did help. The thick mole pads on my forehead were much better than the mole skin. Also cut the curved ends off of a small pantie liner that were a perfect fit on top of my ears - no overlapping onto the hairline. Kept the caps on for the full 8 hrs with one roadside change on the way home. I was also concerned about the scalp frostbite or tenderness and noticed that when wiping down the underside of each cap if you went into the seams you could wipe out a lot of frost and condensation that could be an issue.
Collene~ As far at the neuropathy I had a lot of issues with this when my lymph nodes were removed (my were taken from the groin area) and my groin and both thighs had neuropathy that was very painful. The doctor had me take Glutamine Powder (10 grams three times a day). I am now also taking it after chemo to help with the neuropathy as well as joint pain, tingling ect.. The nurse at the office said that the power form was best because if you choose a pill you need to take 30 a day to get the same dose. I blend three small fruit drinks (Costco has frozen Jamba Juice Fruit that I add apple juice and the power to). So far no added neuropathy with the chemo and it also should help with mouth sores...
Just my tips not sure if they will work for all but I did want to share
Now just watching my pillow to see how the Penguin Cold Caps worked - now rather than checking to see what the tooth fairy may have left on my pillow- I an hoping for nothing... Take care everyone ~ Becka0 -
Becka, Thanks for the tips. I bet you did have a tough time and some odd looks using an electric blanket this time of year. :-)
0 -
OrdinaryMammal - I cannot believe you're done already. That really flew by!!! CONGRATULATIONS on joining the ranks of the past users!! Hopefully you will be able to pass on your caps soon!
0 -
I'm going to start chemo next week or week after. Anyone suggest cutting hair before starting with caps? My hair is a little past my shoulders and thick. I haven't had it cut or colored in 8 weeks now since I was waiting for results. No use in spending $200 if my hair is going to fall out, thin, or....
So, now that I've decided to use cold caps I want the best success. I've read some places that thicker hair has a harder time since it covers the scalp better. oh no!
0 -
Michcon,
Its true, you do lose more hair when you have very thick hair to start with. Before starting chemo my hair was very thick and ran half-way down my back. I also was worried that if I thinned a lot, it would be more apparent with my long hair. So after asking Frank (he said cutting to shoulder length wouldn't be a problem) I cut it right before my first chemo treatment. My hair is now about the length as yours is in the picture.
As for hair loss, yes, I did lose a lot of hair (really distressing at first), but I had lots of hair to start off with and I still have a full head of hair after 5 months of chemo and 1 month of post-chemo shedding. Judging by your hair you will do fine. Also, if your hair has a tendency to knot easily like mine did, consider investing in a sulfate-free leave-in conditionner and wide-tooth comb.
0 -
Way to go ordinarymammal,
I know it feels good to give those Cold Caps back.
I wanted to let new users know that a Hot Water Bottle really helped me during the Cold Cap treatment. Another thing that I was able to get was a blanket that you heat up in the microwave? I used this when I got back to my house and it was so comforting.
0 -
Hi Michon! About cutting your hair-you can if you want to before chemo but you DON'T have to. the length doesn't matter-we are saving the roots and follicles. Once chemo starts you don't want to cut it until after chemo. You want to keep the same weight thru out. Once chemo starts don't mess with it anymore. So if you want to cut or style your hair do it before chemo. And no coloring 2 weeks before chemo! The less produsts on your hair the better. There are lots of them out there but everyone reacts differently to them. As far as thick hair goes you may feel like you are shedding more but you have more hair to shed! Mines thick and it felt like I lost alot but you couldn't even see tell. Talk to you soon! Geralyn
0 -
Hi Everyone...
It is so good to hear from those of you who have finished chemo. I start Friday and I am trying to be positive and not feel sick at the thought of that stuff inside of me. My kids got the Elasto-Caps for me, and I am so glad of that. I am going to try the peas for feet and hands. I am more afraid of the chemo side-effects than I am of the cancer. I am usually SO positive about everything, I am a bit disappointed in myself. I will make sure and let everyone know about the Elasto-Gel Caps. I do like the fit, they slide down on the head and cover everything well. They are heavy and bowl shaped. I will use dry ice to cool them, and my doctor is not really pleased, and thinks it is a waste of time, so I am especially hopeful for successful results. My hair is long, but fine, so that is a plus.
I was wondering if the hair loss above the ears could be from the tops of the ears touching the scalp and preventing the cold from penetrating deep enough in that area? I may try folding my ears down....LOL. Sounds silly, but, it may work. The Elasto-Gel Caps require Ace Bandages to wrap around the head or any bandage type strap. We have done some practicing, and they fit well, and don't seem to shift. The only uncomfortable part is it seems tight under my chin where it presses up against my throat.
I just read about taking Ibuprofen or something similar before putting on the caps to help alleviate headaches....what a great idea!!! Are there any other tips that may help? My doctor told me to take ginger root for nausea. I will be doing AC x 4 cycles (every other week). Adriamycin & Cytoxan then something with a T for 12 weeks.
Today, I was told, by the nurse, that all cancer tumors were treated with the same drugs for the same length of time. The reason I questioned this, was that the doctor used a site named "Adjuvant.com" to show me some statistics (recurrence rates and mortality rates) for someone with a tumor size 2-3 cm, while mine is 1-2 cm. It just seems strange to me that all tumors would be treated the same.
He did say it is possible that the tumor and nodes will shrink up during chemo, that he would stop and surgery would be done, and radiation started. I guess I am just worrying out loud. I do thank all of you for being here....it really does help to hear your voices and confidence and you seem to be the cheerleading squad....and that helps a LOT! Thank you all....
Peggy
Diagnosis: July 12, 2010 - IDC, <1.6 cm, Stage IIA, Grade 2, 1/3 nodes positive, ER+/PR+, HER2 Negative
0 -
Hi Everyone...
It is so good to hear from those of you who have finished chemo. I start Friday and I am trying to be positive and not feel sick at the thought of that stuff inside of me. My kids got the Elasto-Caps for me, and I am so glad of that. I am going to try the peas for feet and hands. I am more afraid of the chemo side-effects than I am of the cancer. I am usually SO positive about everything, I am a bit disappointed in myself. I will make sure and let everyone know about the Elasto-Gel Caps. I do like the fit, they slide down on the head and cover everything well. They are heavy and bowl shaped. I will use dry ice to cool them, and my doctor is not really pleased, and thinks it is a waste of time, so I am especially hopeful for successful results. My hair is long, but fine, so that is a plus.
I was wondering if the hair loss above the ears could be from the tops of the ears touching the scalp and preventing the cold from penetrating deep enough in that area? I may try folding my ears down....LOL. Sounds silly, but, it may work. The Elasto-Gel Caps require Ace Bandages to wrap around the head or any bandage type strap. We have done some practicing, and they fit well, and don't seem to shift. The only uncomfortable part is it seems tight under my chin where it presses up against my throat.
I just read about taking Ibuprofen or something similar before putting on the caps to help alleviate headaches....what a great idea!!! Are there any other tips that may help? My doctor told me to take ginger root for nausea. I will be doing AC x 4 cycles (every other week). Adriamycin & Cytoxan then something with a T for 12 weeks.
Today, I was told, by the nurse, that all cancer tumors were treated with the same drugs for the same length of time. The reason I questioned this, was that the doctor used a site named "Adjuvant.com" to show me some statistics (recurrence rates and mortality rates) for someone with a tumor size 2-3 cm, while mine is 1-2 cm. It just seems strange to me that all tumors would be treated the same.
He did say it is possible that the tumor and nodes will shrink up during chemo, that he would stop and surgery would be done, and radiation started. I guess I am just worrying out loud. I do thank all of you for being here....it really does help to hear your voices and confidence and you seem to be the cheerleading squad....and that helps a LOT! Thank you all....for being here.
Peggy
Diagnosis: July 12, 2010 - IDC, <1.6 cm, Stage IIA, Grade 2, 1/3 nodes positive, ER+/PR+, HER2 Negative
0 -
Hi Everyone...
It is so good to hear from those of you who have finished chemo. I start Friday and I am trying to be positive and not feel sick at the thought of that stuff inside of me. My kids got the Elasto-Caps for me, and I am so glad of that. I am going to try the peas for feet and hands. I am more afraid of the chemo side-effects than I am of the cancer. I am usually SO positive about everything, I am a bit disappointed in myself. I will make sure and let everyone know about the Elasto-Gel Caps. I do like the fit, they slide down on the head and cover everything well. They are heavy and bowl shaped. I will use dry ice to cool them, and my doctor is not really pleased, and thinks it is a waste of time, so I am especially hopeful for successful results. My hair is long, but fine, so that is a plus.
I was wondering if the hair loss above the ears could be from the tops of the ears touching the scalp and preventing the cold from penetrating deep enough in that area? I may try folding my ears down....LOL. Sounds silly, but, it may work. The Elasto-Gel Caps require Ace Bandages to wrap around the head or any bandage type strap. We have done some practicing, and they fit well, and don't seem to shift. The only uncomfortable part is it seems tight under my chin where it presses up against my throat.
I just read about taking Ibuprofen or something similar before putting on the caps to help alleviate headaches....what a great idea!!! Are there any other tips that may help? My doctor told me to take ginger root for nausea. I will be doing AC x 4 cycles (every other week). Adriamycin & Cytoxan then something with a T for 12 weeks.
Today, I was told, by the nurse, that all cancer tumors were treated with the same drugs for the same length of time. The reason I questioned this, was that the doctor used a site named "Adjuvant.com" to show me some statistics (recurrence rates and mortality rates) for someone with a tumor size 2-3 cm, while mine is 1-2 cm. It just seems strange to me that all tumors would be treated the same.
He did say it is possible that the tumor and nodes will shrink up during chemo, that he would stop and surgery would be done, and radiation started. I guess I am just worrying out loud. I do thank all of you for being here....it really does help to hear your voices and confidence and you seem to be the cheerleading squad....and that helps a LOT! Thank you all....for being here.
Peggy
Diagnosis: July 12, 2010 - IDC, <1.6 cm, Stage IIA, Grade 2, 1/3 nodes positive, ER+/PR+, HER2 Negative
0 -
Can you all help me make a list of things to take along on Friday? (My first chemo date)
Thanks....
Elasto-Gel Caps & plenty of dry ice
Ibuprofen for headaches
Wear something warm, maybe extra socks
Peas for hands and feet.
Favorite Blanket
ALL of my children are coming!!!! LOL I think they are afraid I won't!
Should I take any snacks?
Should I eat first? or not?
0 -
Peggy,
I eat before and during my chemo appointments. My breakfast is always lots of protein and fiber. My chemo center provides sandwiches, but I found it hard to eat while wearing the Penguin Cold Cap. I was able to drink soup during treatment #2. Take the ibuprofen before you start wearing the caps to ensure the pain relief has kicked in.
You are right that the chin strap can be uncomfortable. I have a panty liner on my throat (very attractive!) and that helps stop the irritation. Also, I cut ear-shaped pieces of panty liners for my ears. I haven't had any excessive shredding around my ears. Use the thick Moleskin PADS for the forehead.
Good luck!
Colleen
0 -
Thanks, Colleen.
LOL!!! The thought of the panty liners everywhere is hilarious. I will put one there too. I can't imagine what my one son will think! My four girls will just smile and do it. I am not sure how much dry ice to buy,....it is $1.00 a pound here in St. Louis, and since these caps don't fold out flat, I am going to fill them with a little dry ice. I guess there is going to be a bit of experimentation going on.
I will be sure to take the ibuprofen ahead of time.
I really want these caps to work, and I want to figure out some way that to get this information about these caps out to EVERYONE who is taking chemo. I think my whole family hopes it works, but they are doubtful, because my doctor said they don't, and they think if it worked they would be offered to anyone doing chemo. LOL....but, I have faith and I am passionate about this.
Thanks, Colleen.....and my very best to you....Peggy
0 -
Colleen
Where is the best place to get the thick moleskin pads?
0 -
Hi Emster,
In St. Louis we have Walgreens, and they carry a number of different moleskin products, including the thicker pads. Good luck.
0 -
thanks so much! Chemo not for few weeks but trying to be as prepared as possible. You will do great. Keep the faith, stay strong in God.
"For I am the Lord your God, who takes hold of your right hand and says to you, Do not fear, I will help you..." Isaiah 41:13
0 -
I just had my second TC treatment using the elasto gel caps. Day 22, I am seeing a few hairs on my shirt. I did cut my hair short before I started my first chemo, to help the cold get to my scalp.
We also bought dry ice from a local dealer $1.pound. Bought 10 lbs,, which was enough for the 4 caps I used. I didn't use ace bandages to tightly wrap the caps on,,so I may not get the full benefit.
Instead of mole skin, I made some earsocks by cutting off the ends of socks. That seemed to protect my ears OK. I post again in 2 weeks and give you an update.
0 -
Well, here we go...literally....all my children (adults) and a friend are all coming to my first chemo treatment. LOL....I am sure it will be a circus. I have everything gathered, and I hope I have enough dry ice, if not they will make a run for more. I feel like I am forgetting something, but I think it is just the unknown making me feel like that.
Emster....I do walk with God....good luck with your chemo, and it is good to be prepared early....you never know when something might pop up. I hope I do this right...just to prove my skeptical doctors that it works.....lol. Best wishes, Emster and to everyone here. God bless all of you.
Peggy
0 -
Well, here we go...literally....all my children (adults) and a friend are all coming to my first chemo treatment. LOL....I am sure it will be a circus. I have everything gathered, and I hope I have enough dry ice, if not they will make a run for more. I feel like I am forgetting something, but I think it is just the unknown making me feel like that.
Emster....I do walk with God....good luck with your chemo, and it is good to be prepared early....you never know when something might pop up. I hope I do this right...just to prove my skeptical doctors that it works.....lol. Best wishes, Emster and to everyone here. God bless all of you.
Peggy
0 -
Good Luck today Peggy!! I'll be thinking of you and wishing your follicles stay good and cold!!
0
