Uterine Serous Carcinoma

Giana23
Giana23 Member Posts: 13 Member

Hello- I am new to your board.

I am stage 3C2 and 61 years old. I was diagnosed in October. I had open abdominal surgery Nov. 7 to remove my uterus, cervix, etc... and 4 enlarged cancerous lymph nodes. Next Wednesday (29th), I start chemo ...6 cycles once every 3 weeks.

I want to try icing/cold therapy on my hands and feet. I can't imagine 6+ hours of this...so please share your experiences. I am looking to purchase gloves (or mittens) and booties ...if you have items you recommend or don't recommend, please let me know or even message me. I have read some posts on the topic, but was hoping for some updated responses. Also...if you are NED and did icing...did it work for you.

I'm also ordering some caps/hats and am a little overwhelmed at all the choices. Someone I know recommended making sure they are lined with satin.

I read through the FAQ, etc...but please feel free to share anything you think my help me in this unexpected journey.

My gyn onc is with Virginia Mason (Seattle).

Thank you

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,343 Member

    Giana23, I know some of the women have been very creative. I am hoping they chime in and let you know since I didn't ice. It is Thanksgiving so I am not sure how many are looking at the board right now.

    I am sorry you have had to find us. I would suggest trying to take a breath. As for caps/hats, I might suggest trying one or two, see what you like and go from there. Everyone is different so it will depend on how sensitive your scalp is and it gets a little cold in the winter months. For me? Satin is cold - LOL!!!

    Please stop back and let us know how you are doing and if you have more questions.

    Hugs dear one

  • Armywife
    Armywife Member Posts: 451 Member

    Welcome, Giana, to the club no one wants to join! Thank you, No Time, for remembering me and bringing me back to this wonderful group. Giana, I used ice on my hands and feet, and I am so glad I did! I didn’t have booties or mitts- I used simple cold packs or bags of ice wrapped in kitchen towels and secured with rubber bands. I’m sure I looked a sight, but it worked! Take some extras in a small cooler, so if yours get warm you can swap out. Official ice gear is great if you have time to get it. You’ll only need to use it during the actual infusions and shortly after. It’s not hard to get used to as you’ll have warm blankets available for the rest of you. I had 100% success with icing. I will say that I didn’t know about it before my first chemo and had an allergic reaction to taxol which caused severe neuropathy in both hands and feet. My oncologist told me that acute onset neuropathy usually dissipates in a couple weeks, whereas the gradual onset neuropathy can be long term. I learned about icing in this group and six years later, I am still neuropathy and cancer free, praise God! I wish you the very best as you undergo treatment.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,343 Member

    Giana, I just came across this recent study (link below). While it was done on breast cancer, something to consider regarinding chemo and neuropathy. I will share that I took D3 prior to, throughout, and continued to this day. I would suggest asking the gyn onc office to see if they have any issues with you starting this.

    https://www.cancernetwork.com/view/lack-of-vitamin-d-may-increase-chemo-induced-neuropathy-risk-in-breast-cancer?ekey=RUtJRDpERDI3Njk0RS1BNzc4LTREMDQtOThBRi02M0I0Nzk5MTRGMDM%3D&utm_medium=email&_hsmi=283519702&utm_content=283519702&utm_source=hs_email&_hsenc=p2ANqtz--tI1svoq2Wt_XdHMmgQgRRAhdnEZ0EABaFCh_nMdo9R-zAEa4NuaoVT3a_ODojDufRe_r__4d--NiRQTwi9WSKczPKuw

  • heyrayray
    heyrayray Member Posts: 2 Member

    Hi Giana-

    I am new to this board also but was diagnosed with UPSC in July and just finished my 6 rounds of taxol/carbo/keytruda. I am also 61.

    I used cold therapy for my hands and feet and ordered the mitts and socks from Amazon. I do have some neuropathy in my hands and minimal with my feet so I do think it was worth it. My socks were better than the mitts I had because the hands did not stay as cold as long. I eventually bought some small flexible ice packs from Target that slipped into the gloves and socks which I really feel helped during the last couple of infusions to be able to refresh with new ice packs. We would pack a small cooler with all the ice packs. I would start using right before they started the chemo, I did not use during the pre-meds or Keytruda infusion. You will get cold so take a blanket with you and hopefully your infusion center will have heated blankets. You will need to take periodic breaks from the icing but it isn’t so bad. I would take a long nap and when I woke up we would change the ice packs.

    Regarding headwear, I ordered some caps from an Etsy seller which are very comfortable to wear around the house and to sleep in. They are made out of bamboo or modal so are very soft. Now that it is colder, I have been wearing knit beanies and have a couple lined with fleece which are really nice.

    I wish I had found this resource before I started treatment. Please ask if you have other questions.

  • Forherself
    Forherself Member Posts: 947 Member

    Welcome heyrayray, thank you for sharing your experience. I think it is comforting hearing advice from those who have actually had the experience.

    Sue

  • MJS19
    MJS19 Member Posts: 23 Member

    I didn't know about icing when I did carbo/taxol for the first couple of treatments and developed brutally painful neuropathy in my hands. I iced for the remaining treatments, with the exception of one that was carboplatin only. That is when I developed horribly painful neuropathy in my feet. Carboplatin alone can also cause neuropathy, but it gets little attention because the taxane drugs are so well known for it. I iced for the first go around using the exact gloves that were used for the initial research that got so much play 4-5 years ago, and I believe that helped. When I recurred, though, I iced by holding plastic bags full of ice in my hands and immerseing my feet in ice water. It was so much simpler than freezing 12 of those heavy mitts and dragging two big ice chests to chemo, and I believe it was more effective, because my hands and feet got much colder. The first time around, the nurses were uniformly helpful with the mitts and booties, but had no ice. When I recurred a couple of years later, they had ice bags all ready to go because so many more people were icing. If you have developed chemo induced neuropathy or are concerned about it, you may want to talk with your care team about acupuncture. My doctor recommended it when I developed the same level of neuropathy after two chemo sessions that most people who get neuropthy (and not everyone does) have after six sessions. Between the ice bags and acuptuncture, I got through chemo the second time around without new permanent damage to my hands and feet.

    Good luck.

  • Giana23
    Giana23 Member Posts: 13 Member

    Thank you so much for sharing your tips and experiences with me. It all really helps. The vit. D study was also interesting. I take a supplement already and hope this helps too.

    I did get some mitts/gloves and extra gel packs sets...I might need to try ice bags, etc... as I don't think what I have will last the 6 hours. I understand I'll have access to ice and mini refrigerator- but not an actual freezer.

  • Bonnie2023
    Bonnie2023 Member Posts: 5 Member

    Hey, it may not affect you, the neuropathy, that is. I only learned about the ice packs on this board which was after my chemo. The worst thing that happened was I felt like the bottoms of my feet were a little puffy and no issues with my hands. The puffiness with my feet went away a week after a chemo round but did tend to happen with each round. My main issue was my legs aching but that only began about three days after a treatment and lasted a few days. The best thing I found to help with the ache was propping up my legs in my recliner and putting heating pads on them. The ache wasn’t terrible more just annoying.

  • BluebirdOne
    BluebirdOne Member Posts: 653 Member

    Welcome all of our newbies. I am so glad that the icing information is coming back to the top. I was dx 5 years ago, and icing was frowned upon as they did not think it was effective. Boy, did we prove them wrong. Currently, I think most infusion centers have realized that icing was working to stop the worst of the neuropathy. For myself, I used gloves and booties, but any combination of ice that works for you should be effective. I have tiny neuropathy on my thumb, and on the ball of my right foot, probably because it was not totally immersed.

    Comfort wise, yes, the initial shock of the cold is a bit much, but as we like to say, doable. The ice shock wore off quickly for me, I wasn't that cold after that initial time. I had a very warm fleece blanket and they gave me warm blankets at first. I did fall asleep for most of the infusion due to a very early start and not enough sleep, and the pre-meds made me very sleepy.

    My take on icing is that if I could prevent the horrible neuropathy through something as simple as icing for a few hours I was going to do it, even if the nurses initially rolled their eyes at me, or if I was really uncomfortable. When I had plantar fasciitis I had to put my feet in ice water three times a day for 10 minutes. It was uncomfortable for the 1st few minutes, then it was not bad. So, I would recommend the process.

    xxoo

    Denise

  • BluebirdOne
    BluebirdOne Member Posts: 653 Member

    Army wife,

    I am so happy to see your little avatar again! Glad to hear you are doing well. Thanks for coming back to let us know how you are doing.

    Denise

  • amy7634
    amy7634 Member Posts: 5 Member

    Hello, just recently joining this group to support my mom who was recently diagnosed with UPSC 3c2 as well in early November. She is beginning chemo next week.

  • ConnieSW
    ConnieSW Member Posts: 1,672 Member

    So glad you found your way here. Let us know anyway we can help.

  • Giana23
    Giana23 Member Posts: 13 Member

    I had my first chemo on Nov. 29. The nausea drugs did work. I was super low energy, but having a hard time sleeping. I did do the icing on my hands/feet and haven't had any issues with them so far. I did have some pain in my lower legs the first couple days and the doctor prescribed gabapentin. I only took it a couple times, but the pain/uncomfortableness went away.

    On Dec. 3 I felt like I had a UTI, so I went to the ER. No UTI, but infection in my pelvis (left from the November surgery) was found, and I was very low on sodium and other blood levels too. So I spent 3 nights in the hospital. I am taking antibiotics for the infection.

    I am also taking an iron supplement every other day (yuck) for anemia. I had another CT scan and blood tests today. Because of the infection, my next chemo will most likely be pushed back (It is scheduled currently for Dec. 20.) Appointments are scheduled with my gyn onc and the infection doctor for Monday and should know for sure then.

    I've been slowly shedding all week, and had my hair cut super short-not shaved on Tuesday. My scalp is a little prickly, and itchy...I hope that improves as the rest eventually falls out.

    Thanks for all the tips and positive thoughts.

    Amy- I hope you'll update on how you and your mom are doing.

  • MJS19
    MJS19 Member Posts: 23 Member

    I'm so glad to hear that you are icing and sorry that you are having to juggle an infection. I hope that resolves soon and you are able to stay on your schedule.

    Take care.

  • PippiCat
    PippiCat Member Posts: 4 Member
    edited December 2023 #17

    Hope you get better soon and able to resume chemo quickly. Ice is great, hope you found double pairs of good mits/boots u like and found a way to keep cold the second pairs. strongly recommend you use the L-GLUTAMINE powder that’s recommended by our doctors. After I started using, on top of my icing I think it made the critical difference; experienced no symptoms after the second cycle.

  • Bonnie2023
    Bonnie2023 Member Posts: 5 Member

    Hey, it may not affect you, the neuropathy, that is. I only learned about the ice packs on this board which was after my chemo. The worst thing that happened was I felt like the bottoms of my feet were a little puffy and no issues with my hands. The puffiness with my feet went away a week after a chemo round but did tend to happen with each round. My main issue was my legs aching but that only began about three days after a treatment and lasted a few days. The best thing I found to help with the ache was propping up my legs in my recliner and putting heating pads on them. The ache wasn’t terrible more just annoying.

  • Giana23
    Giana23 Member Posts: 13 Member

    December 28 Hi- just a quick update. I'm still on two antibiotics for the pelvic abscesses/infection...more than three weeks now. The Dec. 15 CT showed the abscesses are smaller, but had quite a ways to go. I have a CT scan/bloodwork on Jan. 2nd to see how they're improving, etc. Later next week I have appointments with the infectious disease doctor and then my gyn. onc. I was supposed to have my 2nd round of chemo on the Dec. 20th and that was pushed to Jan. 8. Optimally the infection would be gone before chemo resumed, but I don't think that's going to happen. I am anxious about the delay and everything being the stage that I am.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,343 Member

    Giana23, hoping you can get back on your schedule and the infection is gone. Please continue to let us know how you are doing. Hugs dear one

  • ConnieSW
    ConnieSW Member Posts: 1,672 Member

    Hope the testing went well today