Uterine papillary serous carcinoma

leeleec

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.

Forherself

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

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

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

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

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

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

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

https://csn.cancer.org/discussion/comment/1721957#Comment_1721957

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

https://csn.cancer.org/discussion/comment/1721958#Comment_1721958

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

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

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

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,

VTski88

Hi,

Hope everyone is doing well. I am between rounds 4 and 5 (out of 6) of chemo and will have radiation (vaginal brachytherapy) after round 6 in June, but only 3 rounds. Has anyone had the internal vs external radiation? Curious as to why the docs choose external vs internal and why so many rounds of the external.

NoTimeForCancer

hi VTski88, I had both external and three internal (aka brachy). The internal is done to try to prevent recurrence on what was the vaginal cuff. If they don't tell you about and offer dilators, be sure to ask. That will help after the radiation has ended to prevent vaginal stenosis and it will make future pelvic exams easier for you.

leeleec

Hi all!

I finished my last chemo 2 weeks ago. I have fared pretty well after sandwich therapy. Most side effects have disappeared, except for some neuropathy. I have a CT scan at end of May and have Signatera testing every 3 months for next several years. Quite fascinating to have tumor DNA compared to current bloodwork!