Waiting for treatment options

zsazsa1

Donna, you are an inspiration

Donna, you are an inspiration.  I'm hoping for you that the proposed chemo regimen gives you more time with your wonderful army.

MAbound

Donna Faye said:

Thought for today

I updated my picture so you could see my army! That was a couple of years ago at Faye's Frolics which we try to have once a year. As I ponder my future, I wanted to share something. This speaks to me because I have always tried to control everything to avoid disaster. Sometimes, things fall apart no matter how hard you try to avoid it. Now I must learn to be comfortable with uncertainty. " A warrior accepts that we can never know what will happenen to us next.We can try to control the uncontrollable by looking for security and predictability, always hoping to be comfortable and safe. But the truth is that we can never avoid uncertainity. This not knowing is part of the adventure. It is also what makes us afraid. Learning to live with uncertainty is how we learn to relax in the midst of chaos. How to be cool when the ground beneath us suddenly disappears." Pema Chodron

Oh, I love that!!

I'm always accused of being a worrier rather than a warrior, but have rather considered myself as being "pro-active" trying to prevent the possibles before they happen. Doesn't always work, but I feel better for being prepared. I'm not sure I could easily let go of that part of my personality, either, but I sure am always going to remember this post! Thank you so much Donna Faye, you are a treasure!

Fridays Child

Donna Faye said:

Thought for today

I updated my picture so you could see my army! That was a couple of years ago at Faye's Frolics which we try to have once a year. As I ponder my future, I wanted to share something. This speaks to me because I have always tried to control everything to avoid disaster. Sometimes, things fall apart no matter how hard you try to avoid it. Now I must learn to be comfortable with uncertainty. " A warrior accepts that we can never know what will happenen to us next.We can try to control the uncontrollable by looking for security and predictability, always hoping to be comfortable and safe. But the truth is that we can never avoid uncertainity. This not knowing is part of the adventure. It is also what makes us afraid. Learning to live with uncertainty is how we learn to relax in the midst of chaos. How to be cool when the ground beneath us suddenly disappears." Pema Chodron

Thank you

This quote is very meaningful to me.  I, too, am one to make plans for various potential situations.  I like to know what's going on.  But every three months there's going to be another scan and there may be situations in between that lead to other questions and uncertainties.  And somehow I need to learn to live with that instead of worrying about it.

Forherself

Donna Faye said:

Thought for today

I updated my picture so you could see my army! That was a couple of years ago at Faye's Frolics which we try to have once a year. As I ponder my future, I wanted to share something. This speaks to me because I have always tried to control everything to avoid disaster. Sometimes, things fall apart no matter how hard you try to avoid it. Now I must learn to be comfortable with uncertainty. " A warrior accepts that we can never know what will happenen to us next.We can try to control the uncontrollable by looking for security and predictability, always hoping to be comfortable and safe. But the truth is that we can never avoid uncertainity. This not knowing is part of the adventure. It is also what makes us afraid. Learning to live with uncertainty is how we learn to relax in the midst of chaos. How to be cool when the ground beneath us suddenly disappears." Pema Chodron

I am following

and sending warm support to. you while you make your decisions.  I find that is such a hard part of this disease.  There is nothing cleaar cut.  You have defined your goals and now can choose the most likely path to get you there.   Hugs

I love your new picture.  On your page you can post pictures under the heading expressions.  

JillAndrea

Donna Faye said:

The bracky is not bad

I've had 8 - 4 once and then 4 more. My rads doc is fantastic so the treatment was not hard at all. 25 pelvic as well and again, just some bladder and bowel upset but settled down in a few months. Easier than a divorce for sure You'll be fine!

Easier than divorce... haha.

Easier than divorce... haha. Been there.  

I am so worried because I am still experiencing pelvic floor symptoms, even 5 weeks post-Davinci.  It seems I am alone with this difficulty, and it concerns me that brachy may be harder for me too.

Molly110

Donna Faye said:

Not clear but better info and some time to think

Wonderful 2-hour meeting with the medical team. Thank heaven my daughter was there to take in what I missed. The good news is I have up to 6 weeks to decide but believe will do before then. The vaginectomy does not sound like the best choice as she believes either the rectum or bladder or both could be damaged and would be living with a bag or two! At 80, I am going to have to mull that over.  The hormonal therapy does not work well on UPSC. She is very much interested in the lenvatinib/pembro immunotherapy.The side effects can be toxic but the results for those who tolerate it well are promising. I think that may be what I choose to do. I have sold my home and should close by March 1 and be settled into my son's home where we have a lady to help me should I be puny. There is the possibility of cleaning the V out once again like in Oct., but because of all the rads, the V is getting very scared and bleeding can be serious. I am now at home and the BP is down and the knees are not knocking. I know my time is getting short on this earth, but I am not sad as life has been 89.9% excellent! My major concern is that I not be a burden to anyone, but my kids all say it is their time to scare the monsters away. I have been greatly loved and will decide on what seems to offer all of us the best QOL. I hope my choice and my reporting to you on how things go will be helpful to others who join us on this lonesome road. Until next report, I remain at peace. df

Wow! You have raised some

Wow! You have raised some wonderful children. I love what they said about their time to scare the monsters away. 

 

I hope there are no monsters, but if they do show up, I'm glad you have your own monster slayers.

 

Molly

Molly110

JillAndrea said:

I can relate!

I can so relate to that divorce decison taking so long.  I was in a bad marriage for many years, but even when I knew I didn't want it anymore, it took me two years to work up the courage to change my life and leave.  I saw a therapist during that time, and she always said, "When you come to terms with how you want to live from now until death, you will know what you need to do."  Once I got through that hurdle, what a relief.  I moved out, got a beautiful apartment, got a better job, and better relationships with my friends, and within a few years I was dating.  And then I met my current husband, who is such a blessing in my life.  I can't even imagine having been married to anyone else.

This cancer thing is SO different. While I know that I technically have choices, choosing to let the cancer "win" just doesn't ever seem like the right choice.  And even if our cancer is slow-growing, I wanted it gone ASAP.  What is so unsettling is not knowing if it is really, really gone.  Its kind of like wondering if your ex-husband is actually still living in the walls of your home.  Ugh.

I am starting 5 rounds of brachy in March... scared out of my mind, but I don't feel like any other choice is the right choice.

 

 

Hoping

Jill Andrea, everyone's experience is different, of course, by VBT was a snap for me. I was terrified and almost didn't do it. It started off with a bad experiene -- I had to go downtown as the health system I use has only one of the VBT machines. It was a whole new set of people from my local team, and one of them was the only insensitive person I've come  across among the hundreds of health care providers and system employees I've dealt with in the six months since my diagnosis. I was clearly scared about the process of being fitted, and when it was over, she said in a snarky way "there, we are through torturing you." I was so angry that I came close to telling her to shut up unless she was willing to take off her clothes and have a dozen people stand around while she underwent a fitting. Since I suffer from what a friend calls terminal middle class politeness, I did no such thing, but I was frank when asked to review my experience. Fortunately, the woman in question was part of the physics (if that's the right term) end of the VBT. so I never saw her again. My radiologist, resident, nurses, and techs were all amazingly kind and gentle. I had five sessions, and breezed through them. There was no pain or even discomfort, and each session took just minutes. I ended up loving every single person on that team. I had no side effects and no scarring at the one month check up. I am using a vaginal dilator to help make sure that I don't develop any scarring, as my gyn/onc says it can develop later if one doesn't do the vaginal dilation (sex works for vaginal dilation, but it has to be every day). Your medical team may have different advice, of course, but I wanted to share my very recent experience, as I was scared that I would end up burned and scarred inside with a non-functioning vagina, and I didn't know who to ask about it.

 

Molly110

JillAndrea said:

Easier than divorce... haha.

Easier than divorce... haha. Been there.  

I am so worried because I am still experiencing pelvic floor symptoms, even 5 weeks post-Davinci.  It seems I am alone with this difficulty, and it concerns me that brachy may be harder for me too.

Oops, Jill Andrea. I answered

Oops, Jill Andrea. I answered your first email before I saw your second one. I wasn't discounting your expereince. 

 

I hope it goes as smooth as silk for you.

 

Donna Faye

on the horns of a dilemma

Bear with me, an old English teacher, as I define this word dilemma! A situation in which a difficult choice has to be made between 2 or more alternatives! This is not an easy place to be as I wonder which horn to choose or should I just run between them? I now know how the matador feels in the moment of truth.

It is down to surgery or the keytruda/lenvinta therapy. My son and daughter have asked oncologists in their circle to chime in. I would like my doctor to tell me what she would do, but she seems reluctant to do that and I understand, but it would sure make this decision easier. She says she cannot tell me what she might discover until she goes in surgically, and some of the might be's are scary. Sloan Kettering is big on the K/L treatment and I can always stop if side effects get too bad. I may just have to flip a coin if one treatment does not offer more pros than cons. Sorry to drag all of you along with me, but this UPSC is a real devil and I just happen to be an oddball case!! Good news is I have sold my home and closing is 26 Feb. I will be all settled in my son's home when I begin treatment. I have enough $ from the sale to cover end of life care and that is a biggie for me. I must make a choice by March 10 when I meet again with my oncologist but we are starting the scans, etc. in the next weeks to see if cancer is hiding anywhere else. That will also make the choice easier. Thanks for your continued support.  df

 

 

MAbound

Immunotherapy vs. Surgery

I'm calling to mind Lou Ann's and Der Maus's experience with immunotherapy and thought one of the issues with it is that in time it could lose it's effectiveness? But Jimmy Carter is still going and living a good life at 95. Has that possiblity been discussed and is there any discussion on how long you might get from it? You're age by itself is a big factor on how well you'd tolerate a major surgery or it's aftermath, but the risk might be worth it if you can be cured, especially with the support you are going to have to get through it. If that outcome would still be a coin toss, I'll go out on a limb for you and say that I think I'd chose the immunotherapy. Those scary potential side effects might be like they are when we hear about them for chemo. Possibles but not certainties. Hope that helps you.

JillAndrea

Molly110 said:

Oops, Jill Andrea. I answered

Oops, Jill Andrea. I answered your first email before I saw your second one. I wasn't discounting your expereince. 

 

I hope it goes as smooth as silk for you.

 

No worries Molly!  

No worries Molly!  

Donna Faye

MAbound said:

Immunotherapy vs. Surgery

I'm calling to mind Lou Ann's and Der Maus's experience with immunotherapy and thought one of the issues with it is that in time it could lose it's effectiveness? But Jimmy Carter is still going and living a good life at 95. Has that possiblity been discussed and is there any discussion on how long you might get from it? You're age by itself is a big factor on how well you'd tolerate a major surgery or it's aftermath, but the risk might be worth it if you can be cured, especially with the support you are going to have to get through it. If that outcome would still be a coin toss, I'll go out on a limb for you and say that I think I'd chose the immunotherapy. Those scary potential side effects might be like they are when we hear about them for chemo. Possibles but not certainties. Hope that helps you.

You are right

I, too, think of der Maus but she was just on the Keytruda. This combo is very new but is showing great promise. However, you are right, it does lose effectiveness after a time. The complications with surgery do concern me. I emailed my oncologist today with more questions re the surgery and she will call me in the AM. I am leaning toward the immo option for many reasons. I liked your reference to Carter. We grew up just 45 miles apart in south Georgia. Maybe some of that peanut diet will keep me as strong as he!

 

JillAndrea

Molly110 said:

Hoping

Jill Andrea, everyone's experience is different, of course, by VBT was a snap for me. I was terrified and almost didn't do it. It started off with a bad experiene -- I had to go downtown as the health system I use has only one of the VBT machines. It was a whole new set of people from my local team, and one of them was the only insensitive person I've come  across among the hundreds of health care providers and system employees I've dealt with in the six months since my diagnosis. I was clearly scared about the process of being fitted, and when it was over, she said in a snarky way "there, we are through torturing you." I was so angry that I came close to telling her to shut up unless she was willing to take off her clothes and have a dozen people stand around while she underwent a fitting. Since I suffer from what a friend calls terminal middle class politeness, I did no such thing, but I was frank when asked to review my experience. Fortunately, the woman in question was part of the physics (if that's the right term) end of the VBT. so I never saw her again. My radiologist, resident, nurses, and techs were all amazingly kind and gentle. I had five sessions, and breezed through them. There was no pain or even discomfort, and each session took just minutes. I ended up loving every single person on that team. I had no side effects and no scarring at the one month check up. I am using a vaginal dilator to help make sure that I don't develop any scarring, as my gyn/onc says it can develop later if one doesn't do the vaginal dilation (sex works for vaginal dilation, but it has to be every day). Your medical team may have different advice, of course, but I wanted to share my very recent experience, as I was scared that I would end up burned and scarred inside with a non-functioning vagina, and I didn't know who to ask about it.

 

Thanks Molly,

Thanks Molly,

Where I live, all the doctors are part of the same health system.  My gyn-concologist referred me to the radiation oncologist, but their offices are in the same hospital so I go to the same building.  I already met with the radiation oncologist for a consultation - he was very nice, and all of the staff seemed very warm and friendly.  I feel very fortunate in that regard.

Armywife

Donna Faye said:

on the horns of a dilemma

Bear with me, an old English teacher, as I define this word dilemma! A situation in which a difficult choice has to be made between 2 or more alternatives! This is not an easy place to be as I wonder which horn to choose or should I just run between them? I now know how the matador feels in the moment of truth.

It is down to surgery or the keytruda/lenvinta therapy. My son and daughter have asked oncologists in their circle to chime in. I would like my doctor to tell me what she would do, but she seems reluctant to do that and I understand, but it would sure make this decision easier. She says she cannot tell me what she might discover until she goes in surgically, and some of the might be's are scary. Sloan Kettering is big on the K/L treatment and I can always stop if side effects get too bad. I may just have to flip a coin if one treatment does not offer more pros than cons. Sorry to drag all of you along with me, but this UPSC is a real devil and I just happen to be an oddball case!! Good news is I have sold my home and closing is 26 Feb. I will be all settled in my son's home when I begin treatment. I have enough $ from the sale to cover end of life care and that is a biggie for me. I must make a choice by March 10 when I meet again with my oncologist but we are starting the scans, etc. in the next weeks to see if cancer is hiding anywhere else. That will also make the choice easier. Thanks for your continued support.  df

 

 

Hugs, DF!

Another thing we have in common!  I was an English teacher, too.  (Also went through a painful divorce 14 years ago.)

My two cents:  I'm praying for great wisdom and discernment for you.  I do remember that for me, the worst part of any decision is actually agonizing through and making it - implementing the decision is easier after all that uncertainty about what to do is over.  

I will add that when I was first diagnosed, my college roommate put me in touch with her daughter, who is a PhD geneticist.  laura did part of her training at MD Anderson.  She was the one who told me to get genetic/genomic testing, and she was very excited about the fact that I was MSI-H, because she said Keytruda was an absolutely amazing drug that had been fast-tracked because its efficacy was off the charts. (At that time it was only approved for MSI-H.) I plan to ask for it if I recur, although I have not explored the side effects because I'm trying not to have too much in my head to worry about right now.

Much, much love to you, dear sister.  You have a wonderful tribe and you deserve every blessing.  So thankful for you.

Molly110

JillAndrea said:

Thanks Molly,

Thanks Molly,

Where I live, all the doctors are part of the same health system.  My gyn-concologist referred me to the radiation oncologist, but their offices are in the same hospital so I go to the same building.  I already met with the radiation oncologist for a consultation - he was very nice, and all of the staff seemed very warm and friendly.  I feel very fortunate in that regard.

That sounds like the perfect

That sounds like the perfect set up. My doctors are part of the same system, but I got my chemo and chemo related care in the northern suburb where I live, just minutes from home and work. They have regular radiation at my local hospital, but there is one only of the VBT machines in the system since it costs tons of money, so I had to go into the city for that. Because it was all within the same system, my gyn/onc and radiation doctor did weekly conferences on their patients. This has been my first serious ilness or condition, so I haven't had much interaction with the health care system. I feel supremely blessed to have been referred to this system. 

I'm so glad that you found someone with your same side effect from the hysterectomy. That must be such a relief.

Molly110

Donna Faye said:

You are right

I, too, think of der Maus but she was just on the Keytruda. This combo is very new but is showing great promise. However, you are right, it does lose effectiveness after a time. The complications with surgery do concern me. I emailed my oncologist today with more questions re the surgery and she will call me in the AM. I am leaning toward the immo option for many reasons. I liked your reference to Carter. We grew up just 45 miles apart in south Georgia. Maybe some of that peanut diet will keep me as strong as he!

 

I loved your careful

I loved your careful definition of "dilemma," Donna Faye. I apologize if you have answered this elsewhere and I missed it, but is it possible to start with the drugs and if you have bad side effects switch to the surgery? Chemo was so easy for me except for the neuropathy, which seems to be still getting worse, which is expected since I am only 3.5 weeks past my last chemo, and the severity of the neuropathy is cumulative. However, my gyn/onc has plenty of women who go through the same chemo with no neuropathy at all. So, as you know from your own experience,  there's no way to know how your body will react to the chemo.

 

You sound like an amazing woman, with an amazing tribe. I hope the right choice becomes peacefully clear to you when it's time to make the decision.

zsazsa1

Another consideration is your

Another consideration is your general health, whether you would be able to even tolerate the surgery.  The surgery sounds horrible, but the fact is, you'd probably come through it just fine.  And the immunotherapy could be kept in reserve for the future (and as we've all seen, there are new treatments coming out on a pretty frequent basis these days).

Donna Faye

All your comments help

You are all verbalizing my thoughts. I will be fine once the decision is made as you said, Army wife. Today when I talk to the doc I will have better answers to the surgery downsides. And it is possible to start the immno first but not sure will feel up to surgery if bad side effects. Also, I am on blood thinners and doc is afraid if I wait too long to start treatment may get some serious bleeding. I try and take a mind break every day - a longer walk with the dog, lunch with a friend, etc. but I wake up and the first thought in the morning is What should I do? I have had extensive genetic testing and have nothing to base on there. However, for an 80 year old, I am in pretty good shape so with a few more decision days, I will decide. It helps to write my thoughts and to hear yours. Thank you.