Uterine Papillary Serous Carcinoma: What treatments did you have?

The supplements I took for neuropathy were L-Glutamine, L-Carnitine, Thiocid, B-Complex, B6 (later P5P) and Seriphos. These were all recommended by my alternative medical doctor, one at a time until my symptoms plateaued and then decreased. Sorry, I cannot remember what order they were recommended after L-Glutamine. Now, almost two years after my active treatment ended I'm only taking the following supplements for neuropathy: P5P, which I will stop when I finish what I bought, and Seriphos, which I will continue. I probably take about 40 supplements total daily. I'm 71 and retired so I take it easy when I need to. I walk 30 minutes a day, take yoga once a week and back strengthening classes twice a week. I want to get back to the two yoga classes I stopped when I added the back class. I take a number of health-related online master classes and right now am working on improving my sleep (insomnia and sleep apnea), and gut issues (motility). I really credit the fact that I have been on a plant-based, whole foods diet for almost 5 years and stopped drinking my beloved nightly red wine a year before my diagnosis for my health. I've been meditating daily for 2 years but am taking a monthly-long break from my hour-long version and listening to guided sleep mediation nightly from the free Insight Timer app, which my GP recommended. Just this week I feel as though my energy has increased by 30%, which is very, very exciting, due to a number of steps I have taken. My surgeon said the signs of recurrence to watch out for are pain in the pelvic area, bloating, and of course vaginal bleeding.
I should disclose that I was not treated at Mayo Clinic. I just happened upon this group online and was so excited because I haven't ever met anyone else who was diagnosed with UPSC and I thought it was an answer to a prayer. I live in Seattle and was treated at Seattle Cancer Care Alliance (a partnership between Fred Hutch Cancer Research, University of Washington and Seattle Children's Hospital). @colleenyoung--please tell me if I needed to have been treated at Mayo to be part of this discussion. Thank you.

Jump to this post

Thank you. I was treated in canada so no you dont have to have been treated at Mayo. Insight timer and Tai Chi have made a world of difference for my healing. I try hard to continue my plant based diet but do have a 100 ml of red wine for the resveratol..I live in British Columbia and am very grateful for this group as well as I stumbled upon it at just the right time in this process. (Although it was never a group I was seeking to be a member of =) as none of us were!!!!)Everywhere has different treatment protocols so it was a bit frustrating. I wanted the one that was right for me not just”the standard” one size fits all as we are all different. Not sure I got that but I’m remaining optimistic. I still cycle 40k daily or walk 75 min and hike when the snow is off the mountains. I am also retired from teaching but occasionally help them out. i wish I knew a way to get some $$$$ to go to our type of cancer research. I ‘d be good at organizing a fundraiser so if you have any ideas they are most welcome !! What do you have for breakfast? I struggle with that meal. Also I take grape seed extract and turmeric daily as well as berberine, quercitin and resveratol plus B6 B12..who knows if it helps but it was recommended by the integrative health doc who kept my kidneys and liver functioning during chemo with astralagus. the oncologist was on board with this. My oncologist lowered Paclitaxel dose and said its unlikely any neuropathy will happen with that but alas I have it quite badly but still walk and exercise through it. I just ignore the pain and follow my mantra “just keep moving” INsight timer is a wonderful resource and has kept me from being negative . You mentioned you take about 40 supplements? Are they related to the UPSC ?

Jump to this post

Embeth & goldengirl, thank you for all you have shared! As I begin this post-treatment phase of this "journey", it is most helpful to hear about what others are doing. I also happened upon this site by chance, and was happy to find a sisterhood in others who specifically have my type of cancer. I have come across many blogs, but none specific to my experience, until now. I was not treated at Mayo either, so am grateful to them for providing this resource to us! What you both have shared tells me I have a lot of work to do, but I am headed in the right direction. I am not retired yet, but getting closer - I actually just celebrated my 60th birthday. Considering that last year at this time, I didn't even know if I would be here for it, I am very grateful! All that you both are doing in your retirement is truly inspiring! I have read about the positive effects of turmeric, flaxseed, & the mushroom supplements. Silly question but...do the mushroom supplements have any kind of after-taste? I ask because, while there aren't many foods I don't like, mushrooms is one of them. I struggle with breakfast as well. I have added some strength training to my yoga & walking regimen. I also have some issues with not sleeping well, so good to know about the guided sleep meditation app, I am excited thinking about trying it. I am also excited to hear about the women's cancer event in DC in Nov. I have family on the east coast as well, so am considering attending this. I am not much of a drinker, but do drink wine occasionally. My neuropathy is mainly numbness & some tingling now & then, I am fortunate that I have had no pain. Some days I think it is improving, then others it seems the same, so I'm not sure if it is getting better or I am just getting used to it? My drs have said it could be a good year post-treatment before it goes completely away, if it does. For me that will be end of Nov. Goldengirl, I think our treatment time was actually the same - mine was summer into fall, from Aug thru Nov., but for me this was school time as we start early Aug. Also, Goldengirl - you mention your concern about receiving "standard" treatment. Would you mind sharing what you mean? I feel I received excellent care, but who knows? As has been mentioned by many, the time of diagnosis is an overwhelming one, and we often don't have the strength or time at that point to research or educate ourselves. I feel I am learning more now, after everything has been done!

Jump to this post

By ’standard’ I simply meant that one of my oncologists kept repeating “that’s our protocol” that’s what we do for everybody but I felt they needed to know more about me and my lifestyle. They couldn’t answer why the cancer center where I had surgery recommended 6 chemo and they don't do radiation. I Indicated that if that was their protocol then I was trusting they weren’t sending all their patients home to die so why would my new place recommend it?thats when the only answer they could give me was “because that’s what we do.” It sounds like you had excellent care and I myself am very thankful but did feel like a number and not a person a lot of the time. I diligently did my own research and sought out a naturopathic oncologist as well for his input. I am going to try the mushrooms and I know to avoid sugar as ours is a glucose driven cancer. I’m happy to have found this sister hood as well. I too keep learning everything I can but it does get a bit overwhelming. My sore armpits seem to come and go and then my brain goes to dark places but happily I just get outside and distract myself in the garden or a game of mahjong with friends . I have read that others get that sometimes too . This chemo takes a long time to really clear effects and apparently late ones that haven’t occurred yet can happen. I am hoping all my weird little twinges and things are just that but it is disconcerting. However, life is good right now so I focus on that =)

Jump to this post

@goldengirl2 -- I admire your stamina for your daily activities! Good for you. For fundraising, I'm taking part in the Nov. 2-3 education day and National Race to End Women's Cancer (doing the walk) for the first time this year. It's organized by the Foundation for Women's Cancer in Washington, D.C. You can find info about it and the organization here: https://www.foundationforwomenscancer.org/events-courses/national-race-to-end-womens-cancer/ I'm thinking that this organization is our best hope right now in funding studies for advancements in this area. I'm combining the walk with East Coast family visits. For breakfast, I eat steel cut oats with berries, ground flax seeds, chia seeds, psyllium husk and home-made nut milk. Fifteen of my daily supplements are Turkey Tail mushrooms (Coriolus) and eight are Reishi Gano 161 mushroom supplements. I truly believe that they will prevent a recurrence of UPSC along with a healthy lifestyle. Last month I had a scare with rumblings in my pelvic area but that turned out to be some GI issues so I just added some more supplements. Most of the supplements are for energy, immunity and now gut issues. I'm hoping to reduce this amount because it's very expensive but I will follow my integrative doctor's recommendation to take Coriolus and Reishi for two more years.

Jump to this post