Uterine Papillary serous carcinoma

Posted by goldengirl2 @goldengirl2, Oct 25, 2018

Is there anyone out there who has gone through the treatments for this? I have had surgery , and chemo taxes/carboplatin. Radiation is suggested but no one seems to have any data to refer to as we are such a small group I’m guessing. Very nervous moving forward as to what to do.

Liked by goldengirl2

@slm101

Hi my name is Stephanie. I have upsc. Did everything keeps getting worse. It's been 3 years. Losing hope.

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What was your staging and what course of treatments have you had? I am so sorry that you have to go through this.

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I was dx with Stage 1A UPSC June 2018. Had complete hysterectomy via DaVinci July 2018, 18 lymph nodes removed and all tested negative, pelvic washing had some cells present. My recovery went well, no major pain or complications to speak of, and 4 weeks later in Aug 2018 I had a port placed. The next day I had the first of 6 rounds of chemo, Carboplatin & Taxol administered every 3 weeks. In between my 1st and 2nd chemo infusions, I received 5 rounds of Brachytherapy and again, no major pain or complications. I also tolerated chemo well, was able to manage what little nausea I had, and did not have some of the more typical and expected side effects or reactions – no metal taste, no mouth sores or dryness, no constipation or diarrhea. I did lose my hair 2 weeks to the day after my 1st chemo infusion, and I did experience worsening fatigue with each chemo treatment. After my 3rd infusion, I began to experience neuropathy in my feet, consisting mainly of numbness. I returned to my job after my surgery recovery period had ended and was able to continue working throughout chemo treatments. All my treatments ended in Nov 2018 and I am now NED. I had excellent care and everyone from my gyn onc surgeon to my med onc to my rad onc to every nurse, receptionist….each of them was awesome! Now 8 months post treatment, I still do not have my original stamina back to 100% and am still dealing with the neuropathy, but my hair is back and slowly growing, and I feel very blessed and am very grateful. I am post-menopause and this journey began with one almost unnoticeable speck of blood, which led me to go to the dr. This "rare & agressive" cancer is terrifying! But I am proof you CAN get through it, and now I pray every day my NED continues. I am happy to share with and listen to anyone who needs it, as so many did for me.

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March 20, 2017 began my active treatment for stage 3A, UPSC with a robotic complete hysterectomy. Same protocol as polkagal above, only I received 3 rounds of Brachytherapy following the completion of Carbo-Taxol chemo. I included supplements from an integrative medical doctor, most importantly Coriolus (15/day which I will continue until I am a 4-year cancer thriver), Reishi Gano (8x/day) and meditation. My neuropathy plateaued and then decreased to mild tingling with the supplements she recommended and I still take Seriphos to prevent any symptoms from recurring. I have never regained my original stamina and I am experimenting with different treatments for that. I have done week-long cleanses annually, the first to remove chemo toxins a few months following the end of my active treatment. I am interested in sharing with other members of this UPSC very special club how they are thriving following their active treatment. I don't have adequate words to express my gratitude to my surgeon, oncologist, radiation therapist and all members of their teams for everything they did during my active treatment. I send my loving support to those of you in the beginning of your journey to healing.

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@goldengirl2 @bluemeade7 @bjkingape @slm101, will you join me in welcoming newcomers @embeth99 and @polkagal?
Beth and Polkagal, you stories of getting through treatment for stage 3A and 1A UPSC respectively and being NED (no evidence of disease) are inspiring. Treatment-related fatigue is a common long-term side effect of cancer. What tips do you have for others for accepting the fatigue when necessary and how to pace yourself to do the things that matter most to you?

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@colleenyoung

@goldengirl2 @bluemeade7 @bjkingape @slm101, will you join me in welcoming newcomers @embeth99 and @polkagal?
Beth and Polkagal, you stories of getting through treatment for stage 3A and 1A UPSC respectively and being NED (no evidence of disease) are inspiring. Treatment-related fatigue is a common long-term side effect of cancer. What tips do you have for others for accepting the fatigue when necessary and how to pace yourself to do the things that matter most to you?

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Yes, welcome to our new ladies.. i am one year NED stage 3c upsc operated on a year ago may and chemo ending oct 31 2018. still have numerous odd aches twinges and fatigue hits me when i least expect it… i just rest

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@embeth99

March 20, 2017 began my active treatment for stage 3A, UPSC with a robotic complete hysterectomy. Same protocol as polkagal above, only I received 3 rounds of Brachytherapy following the completion of Carbo-Taxol chemo. I included supplements from an integrative medical doctor, most importantly Coriolus (15/day which I will continue until I am a 4-year cancer thriver), Reishi Gano (8x/day) and meditation. My neuropathy plateaued and then decreased to mild tingling with the supplements she recommended and I still take Seriphos to prevent any symptoms from recurring. I have never regained my original stamina and I am experimenting with different treatments for that. I have done week-long cleanses annually, the first to remove chemo toxins a few months following the end of my active treatment. I am interested in sharing with other members of this UPSC very special club how they are thriving following their active treatment. I don't have adequate words to express my gratitude to my surgeon, oncologist, radiation therapist and all members of their teams for everything they did during my active treatment. I send my loving support to those of you in the beginning of your journey to healing.

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I still have tingling feet a year out!!

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@colleenyoung

@goldengirl2 @bluemeade7 @bjkingape @slm101, will you join me in welcoming newcomers @embeth99 and @polkagal?
Beth and Polkagal, you stories of getting through treatment for stage 3A and 1A UPSC respectively and being NED (no evidence of disease) are inspiring. Treatment-related fatigue is a common long-term side effect of cancer. What tips do you have for others for accepting the fatigue when necessary and how to pace yourself to do the things that matter most to you?

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I think different things work for different people. But I think those basic, common-sense things we all know about- like eating right, drinking water, exercising, getting adequate rest – do help. This was especially true for me during treatment, as I am a teacher and all of my treatments took place during the school year. I managed to get through the week ok, then would make sure I allowed myself to rest in the evenings or on weekends. I told myself it was ok not to worry so much about the house or other obligations. Now as I get further into post-treatment, the fatigue I have isn't so pronounced, but I do find I tire more easily, or can't do something as long without resting – it seems to be a stamina thing. I decided it was ok to break up tasks, instead of always pushing through until something was completely done. I was a pretty healthy eater before cancer, but there is always room for improvement, so I am trying to eat more fruits & veggies, and less processed foods and sugar. I do try to walk every day, and I also do yoga – which I was not able to do for several months due to the surgery and treatments, and I noticed a big difference in how I felt. I truly believe the healthy eating and exercising I was already following pre-cancer aided in my quick recovery after surgery, and also helped me to manage chemo side effects, so I believe it will help me to build myself back up now. I think it's important to be proactive – find what works for you and don't worry about what you can't do. Be patient and forgiving with yourself!

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@embeth99

March 20, 2017 began my active treatment for stage 3A, UPSC with a robotic complete hysterectomy. Same protocol as polkagal above, only I received 3 rounds of Brachytherapy following the completion of Carbo-Taxol chemo. I included supplements from an integrative medical doctor, most importantly Coriolus (15/day which I will continue until I am a 4-year cancer thriver), Reishi Gano (8x/day) and meditation. My neuropathy plateaued and then decreased to mild tingling with the supplements she recommended and I still take Seriphos to prevent any symptoms from recurring. I have never regained my original stamina and I am experimenting with different treatments for that. I have done week-long cleanses annually, the first to remove chemo toxins a few months following the end of my active treatment. I am interested in sharing with other members of this UPSC very special club how they are thriving following their active treatment. I don't have adequate words to express my gratitude to my surgeon, oncologist, radiation therapist and all members of their teams for everything they did during my active treatment. I send my loving support to those of you in the beginning of your journey to healing.

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Embeth, thank you for sharing about your supplements and how they have helped with your neuropathy. I take B6 & B12, and have since my diagnosis, and I think it is helping. But the neuropathy is still there. I plan to discuss your supplements at my next check-up so again, thank you!

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@polkagal

I think different things work for different people. But I think those basic, common-sense things we all know about- like eating right, drinking water, exercising, getting adequate rest – do help. This was especially true for me during treatment, as I am a teacher and all of my treatments took place during the school year. I managed to get through the week ok, then would make sure I allowed myself to rest in the evenings or on weekends. I told myself it was ok not to worry so much about the house or other obligations. Now as I get further into post-treatment, the fatigue I have isn't so pronounced, but I do find I tire more easily, or can't do something as long without resting – it seems to be a stamina thing. I decided it was ok to break up tasks, instead of always pushing through until something was completely done. I was a pretty healthy eater before cancer, but there is always room for improvement, so I am trying to eat more fruits & veggies, and less processed foods and sugar. I do try to walk every day, and I also do yoga – which I was not able to do for several months due to the surgery and treatments, and I noticed a big difference in how I felt. I truly believe the healthy eating and exercising I was already following pre-cancer aided in my quick recovery after surgery, and also helped me to manage chemo side effects, so I believe it will help me to build myself back up now. I think it's important to be proactive – find what works for you and don't worry about what you can't do. Be patient and forgiving with yourself!

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We sound like twins! I too am a a teacher but took my treatments in the summer and into the fall. Proactive is the ONLY way to get things done. Now my question is what should I be aware of. In terms of signs it may be recurring? I truly believe i will NOT let that happen as best I can but just in case…sometimes I have sore armpits but not for long and not everyday.. So much of what happens I think is late effects from the chemo.. I never had neuropathy until after the 6th treatment and then it got worse 3 months after I was done! But i keep on moving no matter what…try to maintain a smiling face aalthough very hard some days and I just keep on believing I can not let it beat me..Wish I new more about it and also how to starve it. I read Jane McCllellands book.

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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.

Liked by goldengirl2

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@embeth99

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.

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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 ?

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@goldengirl2

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 ?

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@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.

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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!

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@polkagal–The mushroom supplements don't taste like mushrooms
I'm attaching a photo of the artwork I see first thing every morning. My friend's artist father did it. It contains the symbols for crisis and opportunity. I have decided to look at my diagnosis as opportunity rather than crisis. I have learned so much about health, quantum healing and gratitude in the past 2-1/2 years. I live in gratitude every day now.

opportunity

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@embeth99 @polkagal @goldengirl2 you're right. One does not need to be a Mayo Clinic patient to be part of the Mayo Clinic Connect community. Welcome to the sisterhood.

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