NOLA in September?

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 Caps by Tricia Strong Tricia discusses how she saved her hair during chemotherapy on the TV show 'The Doctors' aired May 2nd 2013

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.

Maggie

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.

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.



Marsha

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

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.

Gmp...just saw that they may approve the cold caps for general use. I would have loved to not have lost my hair.



Maggie 2

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/

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!!

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...

gmp...Great news about your appt. with Vinnie! I can't wait for that day:)

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.

Springtime-  Thank you so much for this thread!