Icing

BluebirdOne said:

It was explained to me the reason why

centers are indifferent or ignore icing is that it is not a medically proven procedure and they don't want to promote something that might get them sued if the patient ends up with neuropathy after icing. Also as we see, the mitts and booties are expensive, my center reluctantly provided them to me. Not to mention they don't make money from icing, it complicates an infusion and the nurses are already stretched thin. I still think that enough of us have seen good results that they should at least provide information about icing, that it is not guaranteed and let us make our own decision, or even have the patient sign a waiver about efficacy. I find it amazing that the oncology community does so much to try and reduce side effects by funding new drugs, clinical trials, developing new procedures, etc. yet many of them totally ignore icing! Ladies, they all know about it, they just don't tell the patients about it unless asked. The terrible permanent suffering those with severe neuropathy endure is just too sad and I find it almost criminal that all oncologists, especially GO do not at least provide information. 

Denise 

When I was looking for anything that would tell me what my future center will do it, I googled and got to a nurses forum. I don't think I can get in to ask questions because I'm not an oncology nurse. But since people are inquiring about icing, the nurses are talking about it. I did find an answer from a nurse form the center I was looking for, but in another city, so I have some hope.

I wish it was standard treatment. It doesn't do any damage to do it while they find out if it's effective and it doesn't cost much.

https://communities.ons.org/communities/community-home/digestviewer/viewthread?MessageKey=3cb5dfc5-bee4-4e3d-983d-72172aee13fc&CommunityKey=0b54ba80-79aa-446b-80ae-5434d67c4adf&tab=digestviewer

BluebirdOne said:

Head cold cap

 It was $400 a session in 2018 for a very fancy cold cap! This is the type of thing they need for hands and feet as it continually cools the cap. 

The new caps have cold liquid circulating through them and are connected to a computer that maintains the temperature of the cap at around 32 degrees Fahrenheit. These caps also have a covering that keeps them in place and helps to keep the temperature constant.

 

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-cold-cap-therapy-can-reduce-hair-loss-caused-by-chemotherapy/

Thank you for that. i am not sure I would want to do it because I would be afraid the drugs won't get to my head. 
But for sure I wish they did this for mitts and booties. 

So happy to hear this! I hope the rest of your treatments go the same way els19.

Love and Hugs,

Cindi

els19 said:

Thank you

I really appreciate all the support! This recurrence threw me as I know everyone understands. It was extreme abdominal pain that let me know it was back and of course the CT scan. My wonderful doctor and his team reacted immediately and had me back in chemo faster than I would have imagined. So, I had little time to prepare. Also I was in a narcotic haze to help the pain and I don't think well on drugs. But you wonderful ladies gave me enough information, support and help that I was able to try icing which worked. And it was by always checking in on this board that I knew about icing. I'm also happy to report that the chemo was able to help enough that I'm no longer in pain and off those drugs! I'm taking that as a good sign the chemo is working for me again. My doctor has already started the process of genomic testing of my tumor. He said he's very hopeful the chemo will work since I responded so well the first time and was able to be NED for over five years. But he's preparing for the next step if needed. Now clearheaded, I read back through the posts this morning and saw the idea of the cold pack on top of the head. I got a nasty scalp rash last time and plan to try that next week. But before chemo, I get a new port and have to get a Covid test today. Oh, my other good news is we got permission for my husband to go to chemo with me to help with the icing! I'm feeling very blessed! Thanks again everyone!

So glad they're accomodating you

els19- Glad to hear that the icing is going well for you. 

I've added a link to this discussion topic to the FAQ page since it contains a lot of great information on this subject and will help others in the future.

Hello Everyone

I am new to the community and was just reading your threads about icing. Thank you all so much for the useful information!

I have Stage 3 lllA, grade 2 uterine cancer. I had a complete hysterectomy May 19, 2021 and the pathlogy came back with the bad news. It had spread to my fallopian tubes that pathology saw. The surgeon thought eveything looked fine during the hysterectomy so she was very surprised.

I started treatment 7 days ago.

I guess it is what is called sandwich . Day 1 was chemo inufsion center for 6.5 hours then radiation

I do 25 radiation treatments altogether , day 28 another chemo, 3 internal radiations, a break for a month and then 4 chemos.

I had no trouble with the 1st chemo, but NP did say it is a lower dose with in conjunction with th radiation.

The later part of chemo will be higher doses. The chemo I had was Cisplatin. 

I had been reading about the icing and this is the 1st thread I have red on the site and so grateful to you all not just for the information, but your kindness and wisdom you share with one another.

I have stress about the hair and see there are caps for $80 on Amazon. I doubt if they are cool enough and saw PRimavera is afraid of them in case cells go to the brain. I certainly dont want that!

Els19, Armywife, Molly, Primavera, ZaaZaa - How are you all? I hope very well!!!!