NOLA in September?
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Hi All!
It's hard to have to go through chemo and really hard to loses your hair. Here is just a reminder when facing chemo and dreading losing your hair. You don't have to! Many are saving their hair using the penguin cold caps. Here is a link of the showed that aired on The Doctors just last month! I used them myself and now I tell others about them because many do not even know about them. there is a thread on here call Cold Cap Users Past and Present and you can see how much the cold caps have been used by many in just the last year! I don't think it is a secret society anymore! I just wanted to share. PM me if you want more info.
Geralyn Pewarchie has shared a video with you on YouTube
Preventing hair loss during chemotherapy with Penguin Cold CapsTricia discusses how she saved her hair during chemotherapy on the TV show 'The Doctors' aired May 2nd 20130 -
Just to give the "other" opinion about cold caps... I had researched it and knew they were expensive and you need at least two helpers at chemo to help get them on... but I was game. So I asked my MO about it, and he did not want me using them.. His opinion, and I agreed with him, is that cold caps prevent the chemo from getting to the hair folicals, but it also prevents the chemo from protecting the scalp. And since scalp mets are a real concern if the cancer metastasis's, I was not willing to take that risk. So I did not use them.
To each his own... I just wanted to give my perspective, and tell my discussion with my MO.
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I've never heard of scalp mets! Good grief. I found losing my hair traumatic, I suppose most women do. I know that when I had the A part of AC, the nurses gave me ice to chew, and the times when I did that, I did not get mouth sores. I've heard of others putting their toes and fingers in ice to prevent nails falling off. Interesting. Something as simple as ice!
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I used frozen peas on my finger and toe nails... Never had issues. But I have seen nails that were not iced. They can turn black and fall off... I wasn't concerned about icing my extremities and mets... although its sort of interesting that I was the only one doing it at the infusion center, and the nurses didn't seem familiar with the idea of it.
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My onc had the same opinionabout the cold cap and said no for the same reason bdavis. As for nails I was fortunate as I did nothing to them and they just turned slightly orange and got ridges.
Maggie0 -
I did not end up needing chemo so I didn't research cold caps but I wonder wouldn't cooling fingers and toes essentially have the same effect of slowing cellular metabolism in fingers and toes and preventing chemo from acting, or ice prevent mouth sores --- the same as with cold caps and hair?? Two quick references that came up about cold caps...
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Well... Cold caps are cooled with dry ice, so they are much much colder. Frozen bags of peas sitting on top of the nail bed (and I wore socks as well) isn't nearly as cold. But most importantly, no one gets cancer metastasizing to their outer extremities... Mets go to the scalp, liver, bones, lungs and brain.
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I had PT with actual cups for cupping therapy, multiple times--ow! I think it did help with adhesions but mostly surface ones, and it was very painful. Definitely loosened up my belly button (which wasn't the intent, just a nice side benefit). The deeper adhesions on the left and right sides are still there.
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Gmp300. Thanks for the cold cap info. I am so on the fence about doing chemo again for my little 6 mm IDC second primary. Also I just saw a clinical trial result that said chemo might be overkill for her2 cancer, but more study is needed. I didn't think twice about loosing my hair the first time. But for some reason this time it's harder. I will look into this.
Mags, congrats on pulling that drain! I still am not ready for jeans although my drains came out 4 weeks ago.
So my disability runs out this week and I'm trying to get extended but I probably could work. It's not a physical limitation it's a mental one. Once I go back there is no getting away from it even if I don't work every day. I delegated my staff and projects as if i would be gone for 6 months, but did not Anticipate i would delay chemo.
At home I am still on a organization frenzy. I've gone thorough every closet, cabinet and drawer and filled up the trash cans 2x, made trips to goodwill and posting stuff on Craigslist. I tried to power wash my patio but its too much work and I'm meeting someone today to finish the job. I spent a bunch of money on clothes (cause nothing fits) and I scheduled a professional outdoor family portrait. I should probably go back to work because all in doing at home is finding things to spend money on and my disability only pays 60%.
I'm going to get my kayak wet on Saturday. Some folks are doing a leisurely paddle in a lake, which is just my speed. I will need help loading and unloading. This will be a huge confidence builder. If that isn't enough for one day I might go swing dancing. I probably shouldn't, but I want to. I want to get back to my life!
Oh and I start Herceptin today. So all bets might be off but I'm hoping its a walk in the park.
Marsha0 -
Marsha, I had Herceptin once a week for a year and it was a walk in the park for me. I didn't have any side effects from it, my hair was growing back at the time. Actually I looked forward to it since I had made friends with everyone at my chemo place, staff and patients, where I got it.
I'm sure you will come thru it with flying colors!!!0 -
Hi Everyone,
I just wanted to chime in on the remarks about the cold caps. I am not pushing them on anyone, just want to get the information out to broaden the awareness so individulals at least have the information and can make their own decision. I believe it is not for everyone but for many it is a everything to be able to save their hair and keep things more private and keep their personal life as "normal" as they can. As far as scalp mets the risk with breast cancer is 1% and that is someone that is a stage 4. Doctors are more concerned with others blood cancers when using the caps. There are many hospitals across the USA are promoting the caps and have freezers for the patients convienance and trials are being done. You only need one helper to change your caps and its usually a family member but some hire a cold cap therapist if one is available in their area. As far as the cost, it can be expensive to some but for others, wigs , hats, scarves end up costing just as much. Also the company can work with you on this.
I used the caps and I am glad I did after I found out that 16% of patients can have permanent hair loss with taxotere. The drug I was on but didn't know that at the time. I only met 1 person with permanent hair loss in 4 years but if you google it there are more than we think. I think that s it on the cold caps! LOl! Just wanted to clear a few things up.
I'll be going back to NOLA for more revisions but not sure when. My last revision didn't take well so Dr. D has 1 more thing up his sleeve. Not sure what that it is yet! I m willing to give it another shot though and still need tattos. hard to get in with Vinnie! He's booked until Novemeber. Wonder sometimes if I'll ever get done!
Happy Wednesday! Geralyn
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I am leaving Friday for Michigan's Upper Penninsula . We will be with my son and DIL saying goodbye as they make their move to Seattle. Then taking a vacation in more remote areas. I may be without service for 7-10 days.
I am thinking of all those going into surgery and recovering. We are in your pocket for sure. You are such strong women.
"See" you all later!!0 -
Cherrie - have a wonderful time with your kids. Try not to cry too much. This is a grand adventure for them and a great excuse for you to visit Seattle.
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Cherrie have a great time!!!!
gmp..thanks for the info:)0 -
Gmp...just saw that they may approve the cold caps for general use. I would have loved to not have lost my hair.
Maggie 20 -
Cherrie, we will be thinking of you and praying for your strength. Enjoy your vacation. Thanks for being in my pocket. I'm up before you get back.
Sharon0 -
Your Welcome Russell!
And Mags - I don't understand? who will approve the caps? FDA? Curious where you heard that. I know there are trials being done and wasn't sure how close we were to FDA approval! That would be great and the cost should go down then. Just funny that so many are using them now and even getting them reimbursed by their insurance companies.
Well I have an appointment with Vinnie on November 5th! Not sure when the revisions will be yet - I have to hear from Jeanine to see what she works out for me. Aggh another surgery! Well at least I'll enjoy this summer and first thing I am doing is jumping in Lake Huron! Its my 5th summer waiting to be able to take a dip without not being able to go under because of wounds, vacs or healing issues! Yeah! \o/
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it was a news story feed on fb http://www.medicalnewstoday.com/releases/261704.php
a swin sounds wonderful... I miss my hot tub too
Maggie 2
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For all the girls up next week, good luck and look forward to hearing from you once you are on the other side, have a good weekend and enjoy the day!!
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I am looking at ordering a second compression garment and have been searching the internet. I found the following site that has limited garments for sale half price. Unfortunately, they don't have my size. Most of the garments are Marena. Hope this site can help someone else: lipocentral.com/compression_garments.htm
Also, the two Flex Support garments that I brought home from NOLA are size 2XL. I only wore them for 2 weeks so they are in great shape. If someone would use them, I would be happy to send.
Good luck to the ladies coming up next week!
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Just wanted to chime in about the Cold Caps. I was the first one to use them in my area after my oncologist researched the heck out of them. I only lost a bit of hair by my ears where the caps were not tight enough. That was 4 years ago and my oncologist now has pamphlets about them in her office. I did meet someone who's hair never grew back after Taxotere and I was glad to be able to research some options. It would make things easier for all with the FDA approval.
Sorry if I hijacked your thread...0 -
Ksue..Do you have to get another garment other than what they give you when you leave? Thanks!!
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gmp...Great news about your appt. with Vinnie! I can't wait for that day:)
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Have a nice trip, Cherrie! That's got to be hard saying goodbye to them
GMP...are you getting tatoos first then revisions? I thought all revisions had to be done before the tatoos?
Melanie, I never ordered any separate garment. I didn't find the ones they provided all that uncomfortable, in fact, I actually thought they were quite comfortable. BUT...I've never had surgery in the middle of summer, either....that might have changed my mind!
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Russell - the Center will send you home with 2 garments that have hook & eye and zipper closures on both sides. I used these 2 garments exclusively for stage 1 and was happy with them. For Stage 2, I am ordering some additional garments without the zippers so that they are not noticeable under clothing and I wanted a couple of mid thigh garments and the Center's go to the knee.
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Anj7,
Thanks for the cold cap info. Such promising news for breast cancer patients. Actually, ALL cancer patients, women and men. Hopefully, insurance will have to pay for the caps just like breast reconstruction.
I have also met a few women that permanently lost their hair from chemo. One had no hair grow back and the orher only has patches of hair. If it's approved by FDA and patient gets medical advice for using cap, I say go for it. We endure so much physical and emotional pain as it is so it's nice to have this option to give us a boost toward healing and moving on with life easier.0 -
Geralyn and Ang, thanks for the info about Cold Caps. I tell you what, small risk of scalp mets or not, I would have done it if they had them in 2008. I always said, doing all the cancer treatment would not have been half as bad if you could keep your own hair !!! I also have a friend who'se hair is not coming back much at all after her treatment. So upsetting for her (it's been almost a year!)
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We haven't had any surgeries since May 24 in this group! Here's the "short list"!
June 17 - Judy_63 - Stage 2,St. Charles, Dr. T., NOLA.
June 20 - Maxine - NOLA for Dr M (appt June 17) Correct a badly conceived stage 1 diep flap for right side that was performed locally in PA. So this next step looks to be stage '1 and 1/2",
.June 21 - Ssla01 - BMX, Dr. M., NOLA
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And guess what!!! This thread is now 4 years old as of June 11! Happy Birthday to us!
Thanks to all of you who contribute. My surgeries are so far in the past it's hard to remember details. You all do a lovely job of taking care of each other and giving support! I think it is so important not to feel alone in this journey, and to know all the options out there. God Bless!!
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Springtime,
That's a happy birthday with thanks to YOU!
. You've been so kind and supportive of all the women on this thread and taking time to post everyone's surgery dates and providing great resources. Thanks for keeping it going and thanks to all the women who come to this thread to post or just read. Blessings!0 -
Springtime- Thank you so much for this thread!
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Spring, it is amazing how much you do for us...especially since you are a long time veteran. :-). Thank you!
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