Asking once again for your advice

Donna Faye

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

One of my husband's friends

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.

So sorry to hear this...

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.

MoeKay

I Too Vote for Second Opinion

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.

Forherself

Second opinion?

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 

BluebirdOne

I would at least try the Keytruda.

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

Donna, I cannot know how you

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.

Armywife

Hugs, DonnaFaye

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

For what it's worth

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

Thank you all and keep the advice coming

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

Counseling

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

Donna Faye, so sorry to hear

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

I get it

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.  

SF73

zsazsa1 said:

Donna, I cannot know how you

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.

Just great suggestions,

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

SF73 said:

Just great suggestions,

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!

Hormonal Treatment

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

MAbound said:

Hormonal Treatment

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.

 

 

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

MAbound said:

Hormonal Treatment

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.

That's what I was told, too,

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.

jan9wils

I went to a therapist who

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

I knew you would all come through

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

Donna Faye said:

I knew you would all come through

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

Atta Girl!

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

Donna Faye said:

I knew you would all come through

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

Good to hear you're feeling encouraged

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!