Endometrial SEROUS carcinoma

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Comments

  • dkbbjn
    dkbbjn Member Posts: 48

    Has anyone on here found a cream or gel or anything besides a prescription pill for neuropathy of the feet/toes? I was prescribed Gabapentin but I hate taking pills for it. Thanks in advance. I hope this post finds everyone doing well.

  • Molly110
    Molly110 Member Posts: 194

    If you live in a medical cannabis state, there a number of creams and balms that help. Mary's Medicinals also has THC/CBD patches that were very effective for me. None of the creams or patches will make you high. I took them before bed, and they really helped take the edge off the pain. Long-term acupuncture resolved all the pain, so I no longer need anything, but the THC/CBD balms and creams were so helpful when I did.

    Good luck.

  • Molly110
    Molly110 Member Posts: 194
  • jan9wils
    jan9wils Member Posts: 210 Member

    I tried different medications and CBD and none of it worked. I found a good acupuncturist and after 9 sessions it was resolved. This was 4 years ago.

  • Molly110
    Molly110 Member Posts: 194

    You're very welcome. It was acupuncture that took care of the pain, over time. I went twice a week for about 18 months during and after the first time I was in chemo, and have continued that schedule over the past four or five years to minimize and then get rid of neuropathy pain from additional chemo.

    When choosing medical cannabis, it's important to get the right combination of THC and CBD. CBD alone was completely worthless for me.

  • JACDEMELWA
    JACDEMELWA CSN Member Posts: 4

    Hello I was just diagnosed with Uterine Serous Carcinoma. No deep knowledge yet as to the details…. Just worry. I'm going for a CT scan this week and then seeing the specialist next week. If this question has been posted previously, I apologize for asking again, but is there a list of questions that should be asked? Also dkbbjn - how are you - It appears to be more than a month since your last post and I appreciate that you started this thread. I do hope you are doing well. Best Regards All.

  • dkbbjn
    dkbbjn Member Posts: 48

    Hi! I'm so sorry that you have had to join this group. My latest scan was on March 18 and it showed that the cancer was slightly smaller so I was thrilled. To me, when there is no spreading of the cancer, it's a win. My oncologist did suggest doing 3 more chemo sessions along with immunotherapy but I decided I wasn't willing to have any more chemo. I was just too tired of not feeling well half the time. I am continuing with immunotherapy (Jemperli, which is the name brand of Dostarlimab) every 6 weeks instead of where I was receiving chemo with immunotherapy every 3 weeks. I am also still taking Fenbendazole without the knowledge of my oncologist. As I've stated before, after receiving a grim prognosis in Sept 2024, that's when I started the Fenbendazole. I still can't say for sure if that's what's causing the positive outcome on my last 2 scans or not but I suspect it might be. You might want to check into it and look up Joe Tippens, he's the one who first went public with taking it with positive results but I understand it's scary to do something that your oncologist isn't recommending. I delayed it for a long time because of that.

    I'm pretty sure they'll start you with a hysterectomy and then chemotherapy. That's their first line of defense for everyone as far as I know. It is very scary but I have had 3 and a half years since my first diagnosis and I've never felt bad or in pain other than feeling bad from the chemo so I hope that's some encouragement. I should be having another scan in June or July.

    I really don't have a list of questions. Maybe someone else can help with that. I'm really glad you found this website and I would love to hear about your journey as you go through it. We can all learn from each other. Sending a hug and prayers your way.

  • JACDEMELWA
    JACDEMELWA CSN Member Posts: 4

    Thank you for your update and all the information you've shared. I'll update periodically as things progress. Hugs and Prayers to you as well.

  • dkbbjn
    dkbbjn Member Posts: 48

    I check my email pretty regularly so don't hesitate to reach out and ask any questions or share any concerns you may have along the way! I will answer the best I can from my experience.

  • PippiCat
    PippiCat Member Posts: 23

    hi Jacdemelwa. I’m sorry you are here too! My advice is to think of your own questions because that’s where you are and everyone has different previous knowledge levels, concern and information preferences. I wouldn’t pressure yourself to be “ready” for this first doctor consult, other than being ready to listen carefully, take notes copiously, and ask questions if you think of them, but more so try to focus on the key points the doctor is giving you and let them structure the information. There will be a lot to learn and process. You will probably receive a binder of information receive a training of sorts. Excellent advice I received was to keep my own notebook, a spiral one, to record my notes, questions, and concerns along the way. I kept this by me constantly and used it in appointments. In the lead up to every appointment I talked with my family about where we were at this time, asked for their questions and concerns which I shared at each appointment. I brought my husband, until it didn’t seem necessary and I made sure I got his questions each time because we come at things differently.

    And thanks for the update dkbbjn. It’s fabulous the tumor is smaller! I’m still on Jemperli as well. My CTs have remained clear, surprisingly. I didn’t think I would get this far. My Signatera marker turned positive about 9 months ago. It had been negative since my second chemo round up to 6 months after end of treatment. However it has stabilized and seems to actually be decreasing. My doctor thinks the Jemperl is probably responsible for how well I’m doing. My tumor is/was MMR deficient so the Jemperli is supposed to work especially well in my case. I don’t recall if yours was MMR deficient also.

    I see your post about neuropathy. I understand this is during a time you are taking maintenance Jemperli only. I had some neuropathy in fingers and toes initially during chemo then used ice shoes and mitts and made myself flavored water with a tsp of L-Glutamine powder 3 times a day as directed by my oncology team (evidence based, on my chemo handout — to prevent and repair nerve damage). And walked twice a day as they also advised. My issues went away soon after but just recently I have one tingling foot and lower leg. My oncology team says that they have not been seeing neuropathy with their maintenance Jemperli patients, so we surmise mine is not related to the Jemperli. The doctor suggested acupuncture though and gave me a referral which I will follow up on. I started with the L-Glutamine again. I work at home and sit too much and am trying to get up and work in different positions. I walk briskly twice a day. So far there’s no change in so I am thinking acupuncture may be my next step.

  • PippiCat
    PippiCat Member Posts: 23

    I’m just curious to anyone who may see this…. How many of us, prior to cancer dx, reported postmenopausal spotting to our pcp or gyn and it wasn’t taken seriously? I did.

  • dkbbjn
    dkbbjn Member Posts: 48

    You have excellent information! I'm glad you told her about keeping a spiral notebook. That is something I did also and is great to be able to go back and review notes. I'm glad to hear you're doing well also! I also have started back walking 45 minutes to an hour 5 days a week, hoping that would help with the neuropathy. I've been taking Gabapentin for about 6 weeks for neuropathy and really don't feel a difference. Thank you for your information you shared on that.

    The postmenopausal spotting was what caused me to see my pcp but I had no idea that could be a sign of cancer but fortunately, she sent me right away for a pap smear.

    So good to hear a positive report! It's very encouraging! Take care and keep in touch!

  • JACDEMELWA
    JACDEMELWA CSN Member Posts: 4

    I'm sorry that it was not taken seriously. This happens all too often. In my case it was. I reported it the second time it happened over a six week period (just two weeks ago was the second one) and the blood test was scheduled immediately. CT scan done yesterday. Now for a long few days until the Dr visit next week. Best Wishes.

  • anne609
    anne609 CSN Member Posts: 4

    Yes — I reported spotting post-menopause to my pcp. Pre-menopause (18-20 years ago), I had large fibroids with very heavy periods. I assumed that the spotting was related. My pcp made no comment about endometrial cancer. And he missed an early sign in a CT Scan with contrast done 5 years ago for kidney stones which my surgeon said showed the beginnings of a problem. Knowing what I do now, it seems to be apparent that general practitioners and internists need much more education on this subject and that women need to be made aware that post-menopausal bleeding needs investigation by a qualified gyn.

  • JACDEMELWA
    JACDEMELWA CSN Member Posts: 4

    Update - Met with Dr's and Surgeon today. Hysterectomy surgery next week. It's about 7 weeks since the first time I had spotting. Having Chemo is likely, even though this was caught (in everyones opinion) very early. No choice but to move forward. I know I have a great team that will help me. That's it for now. Will update again in the future.

  • dkbbjn
    dkbbjn Member Posts: 48

    Thank you for the update. I hope all goes as planned. I'm assuming this is a robotic surgery. As far as I know, I think all hysterectomies are now. I was down for a week after mine. I'm so thankful it's not like years ago when it took like 6 weeks to heal. Take care!

  • dkbbjn
    dkbbjn Member Posts: 48

    Hey, PippiCat or anyone else, what is your ca 125 number lately? I just found out mine went from 12 to 24 which makes me nervous.