Uterine papillary serous carcinoma

I was diagnosed with USPC in August 2024. Had total hysterectomy (stage 1b, no metastasis or lymph node involvement). I have had 3 rounds of taxol/carboplatin and should be starting external radiation after first of year. Other than neuropathy and some short term muscle pains, I handled the first three rounds of chemo ok. I am a bit more worried about radiation and its effects, especially the fatigue and diarrhea. I try to stay active by bicycling alot. Can someone share their radiation side effects, and how they managed? How long did the side effects last post radiation? I restart 3 more rounds of chemo after radiation. How will the radiation side effects affect me on the spring rounds of chemo? Anyone have thoughts on this.

Comments

  • Forherself
    Forherself Member Posts: 1,034 Member

    Welcome leeleec. This board has been very quiet lately. I have not had chemo and radiation, but others have and hopefully they will respond. You can search for advice for radiation. The one thing I remember are advice to use probiotics during radiation and how it prevents diarrhea. Nothing is ever 100 but it has helped lots of women. Zsazsa1 is a member that comes to mind.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,557 Member

    hey leelee,

    sounds like you are getting the 'sandwich' treatment. I had all that and can talk a little bit about it.

    Regarding the radiation, I was completely freaked about the potential side effects. I had a dietician share a study with cervical cancer patients and radiation therapy. Those who TOOK probiotcs and those who DID NOT TAKE probiotics. Those who took the probiotics had less side effects - drastically different - so I would suggest you look in to that.

    Fatigue is a different matter. The external pelvic radiation fatigued me like I had never experienced. When you think about it, they are radiating your pelvis and that is such a massive amount of red cell generating marrow. I worked a desk job and was just tired days. I usually got home and fell over around 7 pm asleep. My advice is to give in to the sleep like that. When radiation stops, the effects begin to lessen immediately.

    It was when I was going to go for radiation that I met with a dietician, so if possible, see if anyone is available for you and "push the protein". I didn't know what that meant. But you was 7 -9 proteins a day. Sounds like a lot, but 1 egg is 1 protein. A chicken breast can be 3-4, cheese, nuts, yogurt…you see how it can add up.

  • leeleec
    leeleec Member Posts: 5 Member

    That is helpful. I have taken probiotics for a long time. I will try to up the protein as well. I can not imagine being that tired, so it will be foreign to me. Thank you for your input. Much appreciated.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,557 Member

    leelee, ask anything. I liked to ride my bike at the time, but I had to give into the fatigue. Remember, REST is RESTorative - I promise you, it gets better.

    I wanted to add, since you have experienced some neuropathy, and have three chemos to go, you might want to look into icing your fingers or toes (whatever is affected). I was very fortunate not to experience that but then I didn't know about it until after it had all ended. Lots of posts on icing.

  • leeleec
    leeleec Member Posts: 5 Member

    The neuropathy seems to be worse after chemo for a week or so, then improves. All in all I feel like I handled the symptoms after chemo pretty well. I hope you are well past all this and have remained cancer free.

  • VTski88
    VTski88 Member Posts: 1 Member

    Hello, leeleec and NoTimeForCancer,

    I just found your conversation. I was diagnosed in January with stage 3a USC (lesions on the ovaries but no other mets and no lymph/omentum involvement). I am a few weeks behind you leeleec, how are you doing? I had my second round of taxol/carboplatin with the addition of trastuzumab on this round (my cancer is HER2 positive) last week. My experience with the side effects has been similar to yours leeleec. I will be having a follow-up scan after my 3rd round and expect that the oncologist is planning radiation therapy at some point so I appreciated the tip about taking probiotics. No specific questions right now, any insights appreciated and I just want to wish you well.

  • DidiON
    DidiON Member Posts: 4 Member

    I too have HER2 positive Serous Endometrial Carcinoma which is also strongly ER and PR positive. I finished 6 rounds of Paclitaxel and Carboplatin at the end of February. I am starting radiation next week for 25 rounds. : (
    I have been taking probiotics for the last month but did not find the types described in posts here. My version has lactobacillus plantarum, lactobacillus acidophilus, a casei, a paracasei, bifidobacterium bifidum, bifidobacterium Longinus. Is there something that helps with radiation induced diarrhea missing from this product? I am going to receive a VMAT treatment if anyone else has had that.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,557 Member

    DidiON, I have taken all kinds of different types of probiotics. I looked for a high number of live buggers - that's all.

    I had to look up VMAT because I didn't know what it was, then I looked at how it compared to IMRT I had and here is what I found:

    VMAT (Volumetric Modulated Arc Therapy) is a type of IMRT (Intensity-Modulated Radiation Therapy) that delivers radiation in a continuous arc, while IMRT delivers radiation from multiple fixed beam angles, leading to faster and more precise treatments with VMAT

    Sounds good! I did have to insert a dilator before each of those treatments, I'd be curious if you had to as well with VMAT

  • DidiON
    DidiON Member Posts: 4 Member

    Thanks for your response. My current probiotic has 60 billion bacteria I guess. No one mentioned using a dilator yet. The radiation oncologist said that this type of radiation should preserve more healthy tissue. I will report back after I have a few rounds of this treatment.

  • leeleec
    leeleec Member Posts: 5 Member

    All, I had 3 rounds of chemo in the fall, with 28 days of radiation. I have had my 4th chemo, with 2 left to go. Hope all is done by end of April. I did well with chemo and external radiation. I really had no major issues other than some relatively minor gastro intestinal issues. I have taken acidophilous probiotics for years so I assume that helped me during radiation. Radiation oncologist recommended vaginal dilators, which help with atrophy. As for chemo, after months of regrowing my eyelashes and eyebrows during radiation, I am starting to lose them again. As for my head, I keep it shaved and wear wigs as I could not see starting to regrow hair just to lose it again. I anxiously await the days when my hair comes back. I only hope it is thick and fuller! I still exercise by riding my bike about 5 or 6 days a week. Keep a positive attitude! I try to find the humor in everything! We all need to kick cancer in the rear!

  • leeleec
    leeleec Member Posts: 5 Member

    BTW,

    My oncologist recommended vitamin B6 twice a day for neuropathy. It seems to help. Thought I would mention it if anyone has neuropathy.

  • oldbeauty
    oldbeauty Member Posts: 382 Member

    yes, but…

    Be careful not to exceed dosage recommended by qualified practitioner. Excessive supplementation can actually exacerbate chemo-induced neuropathy. Eight years ago, my gyn onc told me to stop taking it after recommending it at the beginning of my chemo. Best wishes,