Icing

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  • Primavera
    Primavera Member Posts: 231 Member

    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 

    I am hoping more centers do it

    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

  • Primavera
    Primavera Member Posts: 231 Member
    edited September 2020 #43
    els19 said:

    Today

    Well today was the big day. My chemo center has a machine with cap for ice therapy for hair but nothing for hands and ice. I had booties from Amazon and Molly with lots of refills. They seemed to work really well.They are awfully cold and I wondered if I could do it but I just waited it out and it was fine. They do need the refills changed frequently. I had the estagel mitts and some from Amazon. The ones from Amazon never seemed cold enough. The esragel ones were cold but didn't stay cold long. So, I'm going to work on that before the next chemo. The ice baths that Zaa Zaa used or the gel pads that Army Wife used may be better for hands. I used a heating pad as suggested and was never cold. I did need help from the chemo nurse to change the gel pads. Since I didn't have time to get a port they had to put in an IV and I kept bending the line and my alarm was ringing a lot. But the chemo nurse was busy and it was hard for her to be there enough.  One good thing about reoccurrences is that I was a lot less nervous  today than I was the first time. By the way, you don't start over. Today was chemo seven. Oh and you do need to wear a mask the entire time. 

    Thanks again for all the tips and ideas. And I'm nominating Molly for sainthood for sending me supplies. This world really is full of many wonderful people. 

     

     

     

    Hi els19

    Reading on your experience for what's to come for me. Thank you for coming back to tell us.

    The machine with cap for hair, was it free? I've heard of places that charge a ton and insurance doesn't pay for it.

    I got a lot of those booties from Amazon and extra refills. You frozen them at home and carried them in a cooler and did they stay cold/frozen?

    I also got two pairs of those mittens. Actually, 3 elastogel and another pair of Amazon mittens that look similar. You say they don't stay cold. Question: do you think you can put inside the mitts one or two of the bootie refills?

    I read somewhere that some centers give you bags of ice. You put your hand inside a plastic bag so that it doesn't get wet, then you put your bagged hand inside a bag of ice.

  • els19
    els19 Member Posts: 106 Member
    edited September 2020 #44
    Primavera said:

    Hi els19

    Reading on your experience for what's to come for me. Thank you for coming back to tell us.

    The machine with cap for hair, was it free? I've heard of places that charge a ton and insurance doesn't pay for it.

    I got a lot of those booties from Amazon and extra refills. You frozen them at home and carried them in a cooler and did they stay cold/frozen?

    I also got two pairs of those mittens. Actually, 3 elastogel and another pair of Amazon mittens that look similar. You say they don't stay cold. Question: do you think you can put inside the mitts one or two of the bootie refills?

    I read somewhere that some centers give you bags of ice. You put your hand inside a plastic bag so that it doesn't get wet, then you put your bagged hand inside a bag of ice.

    Hi Primavera

    I didn't ask about the cost of the cap ice machine because I didn't want to use it. I don't think it was free. We have a new Coleman midsize cooler not on wheels but was advertised that it kept things extra cold for long periods. It did keep the bootie refills entirely frozen the entire time. We're an hour and a half drive from the cancer center. I had to meet with the doctor before the chemo and since I had a reaction last time to the taxol they starte my therapy slow. So, it was five hours for the entire infusion. I felt I needed to exchange the refills every 30 minutes to keep the extreme cold level. The booties could go longer but not the mitts. I read someone used dry ice and maybe they got their mitts colder. But dry ice was too scary for me LOL. I also had some square gel refills and started putting them in the mitts and i plan experimenting with both styles of mitts before the next chemo to see how they work and I'll get more refills if necessary. But then I'll need another cooler. Even my little zip lock bags of frozen ice were still frozen at the end of the day in the one I used. I did buy a luggage rack to haul the cooler. I think I learned a lot yesterday and will do better next time. I kept a diary last time I had chemo and I wrote in it that the neurapathy symptoms showed up a few days after infusion. So I'll know if it helped next week and I'll keep you posted. I advise anyone to keep a diary. Mine has a wealth of information in it about meds, symptoms and what worked and what didn't. I hoped never to look at it again but I'm glad I saved it!

  • BluebirdOne
    BluebirdOne Member Posts: 572 Member
    Primavera said:

    Hi els19

    Reading on your experience for what's to come for me. Thank you for coming back to tell us.

    The machine with cap for hair, was it free? I've heard of places that charge a ton and insurance doesn't pay for it.

    I got a lot of those booties from Amazon and extra refills. You frozen them at home and carried them in a cooler and did they stay cold/frozen?

    I also got two pairs of those mittens. Actually, 3 elastogel and another pair of Amazon mittens that look similar. You say they don't stay cold. Question: do you think you can put inside the mitts one or two of the bootie refills?

    I read somewhere that some centers give you bags of ice. You put your hand inside a plastic bag so that it doesn't get wet, then you put your bagged hand inside a bag of ice.

    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/

  • Primavera
    Primavera Member Posts: 231 Member

    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/

    I was just curious

    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. 

  • els19
    els19 Member Posts: 106 Member
    Success

    I'm happy to report that the icing worked for me! I had what was considered my 7th infusion since it was the first one for my recurrence. I still have the same amount of neuropathy from my past treatment. But there is no new increase in it. Success! I'm hoping it continues for the rest of treatment. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    So happy to hear this! I hope

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

    Love and Hugs,

    Cindi

  • Maxster
    Maxster Member Posts: 102 Member
    els19 said:

    Success

    I'm happy to report that the icing worked for me! I had what was considered my 7th infusion since it was the first one for my recurrence. I still have the same amount of neuropathy from my past treatment. But there is no new increase in it. Success! I'm hoping it continues for the rest of treatment. 

    Glad to hear the news

    I am very happy that the icing worked!  Good luck for the rest of the treatment!

     

  • els19
    els19 Member Posts: 106 Member
    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!

  • ConnieSW
    ConnieSW Member Posts: 1,616 Member
    edited September 2020 #51
    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!

    Things are going in the right direction

    i was sitting here despondent about the state of the world and then I read your post.  It put a big grin on my face.  Hope is such a wonderful thing.  

  • LisaPizza
    LisaPizza Member Posts: 356 Member
    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

    So glad they're accomodating you :)

  • els19
    els19 Member Posts: 106 Member
    edited October 2020 #53
    Icing

    The icing is working really well for me. If anyone else is trying it I wanted to let you know about the mitts I found that work really work the best. They're called Healthy Hands and stay very cold for an hour. I mean so cold it hurts but it's what is needed. You can also buy refills for them which makes them less expensive than some of the other kinds. I tried three different mitts and these worked the best. 

  • cmb
    cmb Member Posts: 938 Member
    Icing

    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.

     

  • els19
    els19 Member Posts: 106 Member
    edited October 2020 #55
    cmb said:

    Icing

    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.

     

    Thank you

    Thank you. I've noticed what a wonderful job you do on this board keeping things organized and researched. You're doing a wonderful service for all of us. And it's very much appreciate, CMB.

  • KT888
    KT888 Member Posts: 2 Member
    edited July 2021 #56
    Thank you to the Icing Ladies!

    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!!!!

     

  • els19
    els19 Member Posts: 106 Member
    Good luck

    Good luck with your treatment KT888. It's the Taxol that causes the neuropathy, so you may not need icing. I completed 9 rounds of Carbo/Taxol for my recurrence of UPSC stage 3c and have been on a break since April 1st. My recent CT scan showed only a small increase in my two tumors so my break continues for another six weeks when I'll do another CA125 which is very accurate for me. I've been feeling great and enjoying summer. I will be going back into treatment and my break has allowed me to build up strength for the next step. It's interesting that they're now adding radiation to the chemo day. They keep finding new ways to beat this terrible disease. Thanks for sharing!