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Asking once again for your advice

Donna Faye's picture
Donna Faye
Posts: 319
Joined: Jan 2017

Just returned from my post op check. News was not good.  A tumor was removed on Oct.17 and the vagina looked clear but today it has already begun to grow again. The doctor describes it as like a rind that is at the vaginal cuff. This UPSC is determined to keep returning. She gave me several options which I will think about in the next few weeks. But, I again would like any experience you have had with the options.  First is removing the vagina. That is major surgery and can create problems with the bowel or bladder. At 79, not sure that is the way I want to go. Second is to take either Keytruda or Lenvima. The side effects sound dreadful. Third is to do nothing and when the tumor causes bleeding, to go in and clean again but that too means getting the lining very thin and bleeding may continue. Fourth is to go into palliative care and hospice when that time comes. I have to admit the fourth appeals to me most. However, as the doctor said, I am in pretty good shape and maybe should be willing to fight a while longer. We talked about Foundation One as well and will think about that. So, if you have experienced any of these options, would love to hear your thoughts. I know several have taken Keytruda and I would be open to that if the medicine is not worse than the disease. I have had a wonderful life and never want to linger in terrible shape. So my fellow warriors am looking for your advice. Hugs, DF

barnyardgal
Posts: 241
Joined: Oct 2017

One of my husband's friends was diagnosed with stage 4 lung cancer about 18 months ago. He went thru chemo and radiation and went on keytruda afterwards. He has worked the whole time he has been on keytruda and has felt fine. 

Praying you find the right path that you feel comfortable with.

Kathy G.'s picture
Kathy G.
Posts: 213
Joined: Dec 2012

So sorry to hear this...

I have no experience with what you are dealing with so can offer no advice.

I am sure the other ladies on the board can offer their suggestions.

I will keep you in prayer.

Forherself's picture
Forherself
Posts: 297
Joined: Jan 2019

I think I would get a second opnion.   I guess more radiation is off the table, but a different facility might have different options. I would try that first before deciding.

Just adding I think it would give you peace of mind, no second guessing of the decision you make.   Hugs and prayers for you 

MoeKay
Posts: 240
Joined: Feb 2004

Hi Donna Faye, I second Forherself's suggestion that you might want to get a second opinion, given the widely diverse options you are being presented with.  I did see that a combination of Lenvima-Keytruda is being used for advanced endometrial cancer, with promising results.  See:  https://immuno-oncologynews.com/2019/10/04/lenvima-keytruda-combo-maintains-promising-results-advanced-endometrial-cancer/. 

I know my husband's cousin had widely metastatic kidney cancer and did really well for a number of years on Opdivo, an immunotherapy drug similar to Keytruda.  He was in his mid-80's when he started on Opdivo and was well enough after about 9 months on the drug to take a 2-week European vacation, including a river cruise. 

Keeping you in my thoughts and prayers.

BluebirdOne's picture
BluebirdOne
Posts: 234
Joined: Jul 2018

If the side effects for you are bad you can then make a decision about further options. It might work well for you so that the can is kicked down the road... You won’t have lost much. The removing of the vagina sounds drastic, as well, but a second opinion by someone who has done a lot of these might at least ease your mind about the direction you need to take. Not to suggest your current docs aren’t experienced in that procedure. Good luck to you Donna Faye! 

zsazsa1
Posts: 407
Joined: Oct 2018

Donna, I cannot know how you feel, because I am 20 yrs younger than you.  I know that at my age, I would choose first a PET/CT to see if there are more distant metastases, and if there are not, if surgery were an option, I'd have it, followed by the immunotherapy, if the oncologists thought it would be effective.  But at your age, recovery would most definitely be more difficult.   I agree with getting a second opinion, and fast, at a major cancer center.  Certainly, surgery after irradiation is a challenge.  There is a very severe surgical procedure called exenteration, in which the vagina, and usually adjacent structures are removed.  You would likely live with a urinary and bowel diversion afterward.  But it might stop the progression.  People who have recovered from it report a quality of life that is surprisingly good (at least surprising to the researchers), but I can see the patients' viewpoint - they're alive!  But the odds of even this surgery leading to a cure are under 40%, I think, and there is a mortality rate of at least 5% from the surgery itself.  Perhaps excision of only the affected area can be done, with an easier recovery.

I'm so sorry that you have to deal with this.  I can also understand that at 79, you might feel that you just want to enjoy the time you have left with your loved ones, without going through a miserable surgery, or side effects of treatment.  That's why I too feel that you need more information, and I think you will best get that at a major cancer center that treats GYN cancers, does the big surgeries, does the clinical trials and latest treatments.  I hope there is one not too far from you, where you can be seen quickly.

SF73
Posts: 278
Joined: Oct 2017

Just great suggestions, zsazsa! Knowing if there are any distant metastases would be a great piece of info while considering all your options.

Donna, what was your previous cancer? Was it hormonal? Do you know the ER/PR status of your current tumor? I wonder if some sort of hormonal treatment is an option.Wishing you all the best!

MAbound
Posts: 941
Joined: Jun 2016

Unfortunately, I don't think PR/ER status matters much for UPCS. It's a different animal from adenocarcinoma which is the hormone driven form of uterine cancer.

SF73
Posts: 278
Joined: Oct 2017

 

Oh you are right, MABound. I found this article during my lunch break. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3287395/

Didnt realize tamoxifen usage is a risk factor for this type of endometrial cancer. The article lists a few drugs that are shown to be effective  in vivo. Sending the article to see if it would be helpful.

 

 

zsazsa1
Posts: 407
Joined: Oct 2018

That's what I was told, too, but my second oncologist said that because my UPSC/clear cell tumor DID have hormonal receptors, that there might be some benefit to a hormone blocker, so I'm trying to take one.  But of course, the setting is very different in my case - I only completed chemo and radiation fairly recently, no known recurrence yet.

Armywife's picture
Armywife
Posts: 352
Joined: Feb 2018

Well, we need you around here, sweet lady, so I vote for anything that promotes that outcome!  I will be eligible for Keytruda if I recur, and I believe I'll try it.  I know our dear Bobbi was on it, and to my recollection she didn't have any bad side effects from it.  I think it just stopped working after a while.  But if it bought you some time to consider the more invasive options, might it be worth a try?  Hugs to you!

Fridays Child
Posts: 113
Joined: Jul 2019

Back in the summer when I was considering a clinical trial involving Keytruda and Lenvima, I too was worried about the side effects.  For the combination, some of the side effects are the same from both drugs, which multiplies the potential problems.   I don't know specifics of how they act against UPSC.

My medical oncologist referred to Keytruda as a "lifestyle drug," meaning many of his patients maintain their lifestyle while on it.

Unfortunately for me, my molecular testing indicates that Keytruda alone isn't likely to be effective for mine.  The hospital where I would have done the study had one patient on the trial who was having a lot of problems, but they said the study sponsor had informed them that her response "was not typical of what they were seeing."  The most common side effect was high blood pressure which generally responded to medication.

I'm so sorry you have to make another treatment choice again so soon.  Hoping for the best for you!

 

Donna Faye's picture
Donna Faye
Posts: 319
Joined: Jan 2017

All of this is very helpful. Some additional facts: I am at Duke and it has a major cancer center. My doctor took my case to the tumor board so they pooled their suggestions. I am on blood thinners and have mild high BP. I am also having a flare-up of lymphedema which has aggravated my OA knees. My neuropathy has continued to get worse in feet.  So at the moment, I am feeling like old age is finally winning the battle. I was riding horses in 2017 right before the UPSC was discovered. With recurrences in 2018 and 2019, my lifestyle has been greatly changed. I don't think I ever thought this day would come as my parents died quickly from heart attacks. Facing another year on treatment is daunting so I may need to go to some counseling to see if someone can help me decide how I feel about getting old. I think I may be exhausted mentally and feel like crawling into bed and pulling up the covers and just pretending all will be fine when I awake. That's why I am so thankful for all of you, as you can help me stay focused. xoxo me

CheeseQueen57's picture
CheeseQueen57
Posts: 844
Joined: Feb 2016

I think counseling sounds like a great idea.  You have some big decisions to make and unfortunately we all grieve our normal lives which we lost  But what it sounds like to me, you have a lot of living yet to do and people that love you very much and still have options  If I were you, I'd start with the least drastic treatment option  The surgery sounds dreadful  Good luck my dear  I'm confident you'll make the right decision  

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1583
Joined: Jun 2015

Donna Faye, so sorry to hear this news. This disease is such a life changer and seems to never stop having influence over our living. I'm with several of the other ladies.... Seek counseling and give Keytruda a try. You can always stop it if the side effects are more than you are willing to deal with. And, who knows? That may be just the thing to buy you more quality time.

You know we are all here for you and will support you in whatever path you choose. Selfishly, I hope you choose to fight.

Love and Hugs,

Cindi

Forherself's picture
Forherself
Posts: 297
Joined: Jan 2019

Getting old is not for the faint of heart either.  I read a book called "Being Mortal".  And it is about what you are describing.   The question they asked was "How can I get my best days, and what do I think my best days are?"    My cousin is a Hospice Social Worker and she gave it to me.  Maybe  someone like that would be good to talk to.  And maybe you are depressed and could take an antidepressant from your family doctor.  There are best days left for you.  Getting a second opinion when your case is presented to a tumor board may not produce anything new.  And it sounds like your doctors know you pretty well which is important.  

jan9wils's picture
jan9wils
Posts: 79
Joined: Mar 2017

I went to a therapist who helped me greatly. I've learned to accept my mortality without giving up on living! You've been through a lot, you've fought hard, and you have some options that all have pros and cons. I personally, don't want to do things that take away from quality time anymore. That's what helps me make decisions. I agree with some of the others, the surgery sounds scary with some possible life-style changes. There is nothing wrong with palliative care, but the keytruda may help and slow things down for you, which in a way is palliative. If it doesn't work, or if you have unacceptable side-effects, you can discontinue it. I say this even though I had disasterous results with an immunotherapy drug trial. But I am recovering from that, and keytruda has already been studied and approved for use in many kinds of cancer, whereas the trial drug I was on has not. Could you opt for the surgery say, six months down the road if you change your mind?

Donna Faye's picture
Donna Faye
Posts: 319
Joined: Jan 2017

I cannot tell you how much all of these messages mean to me. I called the home care/hospice person and she is coming Monday to tell me all about that. My knees are better tonight and a massage in the morning should help reduce the swelling even more. The Oncology PT has scheduled lymphedema sessions for 2 times/week for the next 6 weeks. I have been referred to the Joint therapy PT as of today. I must say all my medical team is responding like gangbusters. I see my oncologist again on Dec. 17 to talk about my decisions and she will look at tumor to see growth if any. Going for more genetic testing in 2 weeks. So in just 36 hours, my medical team has made me feel like they are all going to be here for me as needed. My spirits are better. The article was also helpful, SF73. I sure sound like the UPSC model as it has followed the path of the case study.DO keep sharing information as in just 32 hours you all have responded and I am feeling so encouraged. I have read Being Mortal and heard him talk last year. I am going for quality of life but also willing to try some things you have all suggested. This group is so dear. I do not want to share this recurrence with my family until after the holidays and until I am sure what I plan to do. They are planning a party in April for my 80th so I do need to be around for that for sure. xoxo

Armywife's picture
Armywife
Posts: 352
Joined: Feb 2018

One of the many things I love about you is how you get your feet back under you so quickly!  Proud of you!  Army strong!

Fridays Child
Posts: 113
Joined: Jul 2019

It's tough to get rocked by unexpected news and suddenly have such a wide range of options thrown at you all at once.  It takes a little time to process.  Looking forward to wishing you a happy 80th in April!

Forherself's picture
Forherself
Posts: 297
Joined: Jan 2019

There are many great days ahead.  I am glad we can help.  It is hard to talk to family sometimes.  Hugs to you.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2661
Joined: Mar 2013

DF, I am clearly late to the game here.  I am at a loss at what to say.  I "hear" you both in your battle-fatigue and spirit - and they sound very different to me.  However, I have also appreciated that you are one who has known themselves and never been afraid to look in that mirror.  You are our cowgirl for sure and you will cowgirl-up to whatever it may be.  Hugs my dear.

Little Annie
Posts: 24
Joined: Jul 2018

Donna Faye,  like you, I have recurrent UPSC.   Like you, I had lymphedema in thigh, calf, and foot.  I am currently on Doxil/Avastin regiment and having a very good response (CA-125 way down).  Lymphedema has totally resolved.  Maybe worth talking to your doctor.    Wishing you the best of luck.

Donna Faye's picture
Donna Faye
Posts: 319
Joined: Jan 2017

It was so painful to walk due to the knees that I was really feeling low, but I had cortisone shots in both knees on Wednesday and the OA problem is resolving and I am able to walk w/o cane. I have been doing lots of research and will be ready for discussion in Dec. w/oncologist. Have about decided to try the immunotherapy route. She understands my reluctance and said would start with low dose. Again, it helps to hear from any of you in the same boat. Thanks, Little Annie and everyone!

Northwoodsgirl
Posts: 570
Joined: Oct 2009

I too am very sorry to hear what you are going through...

I am also late to responding as I am just reading all these responses now.

What wonderful support you have been given! It is amazing how your request for help thinking through your options resulted in your becoming more comfortable in thinking through beyond the “now” of today. Duke is a great institution and you will make the right decision for you. Each of us have our own values as to what is most important to us. Personally, quality of life is most important to me no matter what. Keeping you in my prayers dear DonnaFaye! 

((Hug))

Lori

dgrdalton's picture
dgrdalton
Posts: 79
Joined: Jun 2017

Thankful you are feeling encouraged! What a load to have and great that your team has stepped up and taking good care of you.

You were one of the first people I remember when I joined this board in 2017 diagnosed as UPSC Stage 1A, also. I'm almost done with treatment for a recurrence this year. My oncologist spoke with me last week about starting Lenvima/Keytruda next. I've been reading everything I can find on the combo. They say the side effects are not any worse with taking both drugs as they would be with taking one alone. She seems quite excited that the response rate for UPSC is 40%, but I'm not sure I understand what that really means. 

Prayers!

Donna Faye's picture
Donna Faye
Posts: 319
Joined: Jan 2017

The combo is what they are suggesting for me. I am meeting with my rads doc today to get his advice. I am also thinking of getting a second opinion as I may move to be near my nurse son. DF

zsazsa1
Posts: 407
Joined: Oct 2018

Donna, I'm glad you have someone in medicine in the family to help you.  Good that you have a plan for trying immunotherapy.  It sounds as if you have an oncologist who is understanding, and ready to work with you.

Donna Faye's picture
Donna Faye
Posts: 319
Joined: Jan 2017

Saw my onc yesterday and we discussed all the options. The vaginectomy is the only offer of a possible cure. PET will determine if any cancer hiding elsewhere but so far seems confined to V. Surgery is major and 2 weeks in hospital then some rehab and a lifetime pee bag. Oral chemo is just a delaying tactic as is watch and wait. I have spent the last month is deep study and research and feel ready to have a conversation with the three children and get their input. End of life does not scare me as we have had to discuss this before. I, do, however,  want to make this decision with the care and study it deserves. I also want to have consensus from the children. Please do not let this posting make you sad. Rejoice with me that I got a miracle 20 years ago and have lived fully and happily for 79+ years. I have a beautiful loving family, great friends, fantastic memories and all of you. I had the most delightful Thanksgiving and Christmas is looking so fun. I share with you my deepest thoughts as many of you walk this walk and understand the emotions that go along with the disease and the treatments. I wish for each of you the sweetest of Christmas moments and come January, I will be ready to face whatever will be. Merry, merry Christmas. DF

BluebirdOne's picture
BluebirdOne
Posts: 234
Joined: Jul 2018

inpspration, your life has been lived on your own terms. You will make the decision you need to make with your family at your side. We are here for you no matter what. I always appreciate your words of wisdom and support. Have a great Christmas with kiddos and let us know how you are doing. 

xxoo

Denise

 

CheeseQueen57's picture
CheeseQueen57
Posts: 844
Joined: Feb 2016

As you make this most difficult decision. I'm suspecting the pee bag is the least of the worries in this entire adventure. I can vouch that the pee bag is not that bad. But we will all be with you in spirit as you discuss this with your loving family (so lucky to have them) and will support you whatever your decision. Have a glorious Christmas. Susan

MAbound
Posts: 941
Joined: Jun 2016

Thanks for chiming in, CQ. Your input as to what life is like with one of those is invaluable. So many of us put a really high priority on how quality of life is after treatment and your first hand experience is invaluable. Have you had any issues with all the traveling you had planned since you got it? Have you had any infections to deal with? What Donna Faye has to think about in terms of surgical intervention sounds quite intimidating, especially for an older person, but which part of it carries the most weight in her decision? The procedure itself or the recovery and life after it? If only one had a crystal ball!

CheeseQueen57's picture
CheeseQueen57
Posts: 844
Joined: Feb 2016

So keep in mind girls that my bag only drains one kidney. My other kidney so far is functioning fine. I haven't had any infections so far and I've had it since July. I've figured out the wardrobe issues and found dressings that allow me to take full showers. My husband does have to change the dressing once a week and of course I can't reach back there to change it myself. But it only takes a few minutes. i a saline flush of my tube every 3 days and change the bag every month also not a big deal. Have to get the tube to my kidney exchanged every 3 months but very easy procedure under local. Can't swim or get in hot tub but oh well. Nobody would know I have it. I've had a few leakage issues I have to figure out but few and far between. Much better than stent. I think I can live with this for test of my life. Hope that helps v

Donna Faye's picture
Donna Faye
Posts: 319
Joined: Jan 2017

Yes, the pee bag is way down the list. Thanks CQ for your input. The surgery is the biggie - that's why I need some input from my nurse son. He has worked for 38 years in ER and OR and now is where he sees elderly patients every day. Quality of life is so important but there is always that WHAT IF the surgery works and I do OK and no more cancer?! Oh for that crystal ball!

 

barnyardgal
Posts: 241
Joined: Oct 2017

I'm sorry you have to make such a difficult decision. Quality of life is the most important, and it sounds like your son is such an invaluable resource to help you make that decision. Have a beautiful Christmas and my prayers and thoughts are with you.

Fridays Child
Posts: 113
Joined: Jul 2019

Donna Faye, you will be in my prayers as you make your decision.  I hope I make it to 79 with as much grace as you have.  I hope you enjoy the holidays and then have a good conversation with your children. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1583
Joined: Jun 2015

Donna Faye,  It sounds like you are in a good mental space. I sure hope you do use your son's input in making your decision. It seems like you are strong and could perhaps recover well from this surgery. So much to consider and I know you will make the right decision for you and your family. Anyway, I want you to know that I hope you do get enough positive input to fight this once again. But, only if you believe you are up to it.  Merry Christmas to you! Enjoy your family, and friends. 

Come back to us again and again and again. We are here for you sweet lady!

Love and Hugs,

Cindi

Forherself's picture
Forherself
Posts: 297
Joined: Jan 2019

So scans would be helpful.   Anyway, we have dilemnas.   Neither choice is what we hope for but there it is.  Waiting to discuss this may let you enjoy your Christmas.  I like to picture a hot air balloon.   I put all my cares in the balloon and then let it lift off.  I watch them float away.   It helps cleaar my head for alittle while.  If you want to wait.  I wish youa Merry Christmas. Hugs to you.

Northwoodsgirl
Posts: 570
Joined: Oct 2009

I am so sorry to hear of this most difficult decision you will be making. 

It must be incredibly difficult to determine what to do next. Quality of life as opposed to the risks of options takes so much questioning and searching.

I know you are suffering greatly. You will make the right decision for you. As Steve Leder, author of “More Beautiful Than Before” writes suffering transforms us ....in so many ways. 

May you find comfort in knowing that so many people care about you. 

Christmas blessings to you and your loved ones....

((Hug))

Lori

Donna Faye's picture
Donna Faye
Posts: 319
Joined: Jan 2017

I had a wonderful Christmas with my family. On Dec. 27th, I shared all the options with one son and his mate. The discussion was so much easier than I had imagined. They are insisting that I move into their home in the coming year if I need help. We discussed all the "what ifs" and it was just wonderful to feel their love and support. I sent a detailed letter to my son in FL with copies of the docs notes. He is an RN and will be able to discuss the pros and cons of the surgery. I will tell my daughter when she returns from a trip after the first. I am feeling much better about all this and am so thankful for wise and loving children who respect my need to be honest about how I want life to be. 2020 is not looking as bleak as it did. May it be a good year for all of us on this board.

MAbound
Posts: 941
Joined: Jun 2016

Your family has always sounded so supportive and I'm glad you are finding out how much. You needed that to make your decision and face what lies ahead with hope and confidence. We'll be with you as you get through this year.

((Hugs and Prayers))

Pat

Fridays Child
Posts: 113
Joined: Jul 2019

Donna Faye, obviously you are a great success as a mother.  I'm so glad your children are understanding and supportive.  Best wishes to you for 2020!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1583
Joined: Jun 2015

Glad to hear your news Donna Faye! Looking forward to supporting you in whatever decisions you make in 2020.

We are all here for you!

Love and Hugs,

Cindi

Donna Faye's picture
Donna Faye
Posts: 319
Joined: Jan 2017

Told my daughter this morning about the coming year! I am so at peace now that all 3 have been told and their support is tremendous! We are planning to put our heads together and some will go with me to Jan. 28th app't. when we will learn more about the growth of the tumor and get some time frame, hopefully. I will start a new line when decisions are made and keep you updated as to what that means. For now, signing off this one and wishing us all a better 2020!!!

BluebirdOne's picture
BluebirdOne
Posts: 234
Joined: Jul 2018

Having a supportive family is the entire world and will help you as you make your decisions. You are one lucky Momma! 

xxoo

Denise

 

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