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Clinical trial update

AWK
Posts: 364
Joined: Mar 2013

So we met with the team to review my scans today.  The tumors are considered stable, no new growth, no shrinkage nor new  tissue. The surprise was that the scan revealed  lesion in my abdominal muscle by my spleen.  They are hoping that this is either a pocket of blood or possibly other fluid related to surgeries.  It appears to be inoperable which is  the same as my tumors.  They are consulting with a surgeon regarding Next steps.  In the meantime we are going to continue with two more cycles of the trial unless we learn my disease has advanced to soft tissue in which case we will move on to the next thing.

The good news is my participation be helpful to others - not only on the drug but he said they are also learning more about UPSC too and how it spreads.  And I was happy to learn I have abs!  Just kidding.  There is always an upside!

hugs to all - Anne

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I am glad that your tumors are at least stable.  That is something.  I hope that the other turns out to be the simplest of things .  I have had several spots that they called lesions show up on the CT scan. They were always in places where there had been a tumor that had disappeared.  I also have 3 dark spots that show up but are nothing.  Praying for the best for you as you go forward wi this trial.  Hugs and prayers, Lou Ann

AWK
Posts: 364
Joined: Mar 2013

Our journeys are so similar.  I hope you are well and kicking some butt in the new regime.  And I agree, I feel like this is a small thing given everything else.  It has their attention but they reassured us it most likely is something minor.  My poor husband.  He decided to go out and pick up some lunch instead of eating the sandwichs they have in the unit.  I realized he just needed to go for a walk and take it all in.  He is my biggest worry in all of this and he has been wonderful.  But the stress is visible.  Two plus years Of this for him.  

I am grateful for all of th support and encouragement here.  You ladies are the best.  

Hugs and prayers for you Lou Ann!  And all - Anne

Donswife48
Posts: 326
Joined: Nov 2015

I'm just new and although I don't know you, I too wish you success in your new clinical trials.  My brother-in-law had an inoperable liver/bile duct cancer and was treated at a teaching hospital.  Although he was told from the beginning that there was nothing they could do to stop it, he stayed with us for 5 years, and provided great possibilities for things that worked.  You sound like him, a trooper, and although his cancer was greater than he, I pray that you will find success in one of the clinical trials.  If it is possible, may you have that "break through" in treatment.  Nancy

Kaleena's picture
Kaleena
Posts: 2037
Joined: Nov 2009

Anne, great to hear your tumors are stable.   I just had a PET scan and found mine to be stable also!    Still a dilemma but stable.   

I will be meeting with the urologist and my gyne onc in Novembet to discuss my upcoming surgery.  They aren't removing the mass. I am getting a ureter re implant surgery and at that time my gyne onc will take a biopsy of the mass 

sending you hugs Anne.  It is hard to be in between stuff.   Lol about the abs!   I haven't found mine!

my best to you

Kathy

AWK
Posts: 364
Joined: Mar 2013

The ureter stent change was so easy!  Much better than last time.  Thanks for the encouragement!  I am glad you are stable too.  I was hoping you would have good news.  Hugs - Anne

molimoli
Posts: 514
Joined: Aug 2014

Anne my darling brave warrior , to whom we are thankful for all the guts you continue to show ,Remember this is a journey you/we are on ,there will be winding roads ,up hills, valleys  4 way stops and also fuelling stations when we are out of strength and courage. We know that you are not doing this for self only dear, we got that from the beginning and will remember your contribution to our hopes of understanding and conquering this lurking alligator for the rest of our days.

 This is a tiny set back, I am confident you will get your mojo back in no time, the wonderful side of the coin we see  is that you dared and continue to dare and continue to keep picking fights with UPSC.If the doctors learn something new from your boxing rounds, its a win win for us or the generations to come.Brave doesn't quite describe you for putting your body through the rigor Thanks to the Creator for you and the likes of you.

Remember  Helen said we will be doing the whack-a mole,we are.

Nuff said today, coming straight from my scardy cat heart. Moli.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1688
Joined: Jun 2015

I wish the news was a bit stronger, but so glad you are stable. And, that you can continue in the trial.

I think about you every day. I'm grateful for your strength, attitude and fortitude (to name a few!).

Thank you for updating us. I'll continue to pray that this round of stuff works!

Love and Hugs.

Cindi

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Thanks for keeping us in the picture - you are a pathfinder for us all.

Stable is good.  OK, I know that we would all prefer to hear "shrinkage" or those wonderful letters "NED" but for those of for whom that is not possible, then stable means we carry on - the beast is not winning!

I hope the next cycles of treatment and scans show some shrinkage, but, in the meantime, please celebrate - stable is good!

Kindest wishes
Helen x

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I agree with Helen.  Stable is good.  And the fact that you can continue with your trial is better.  Hoping for even better news in the future.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

and prayers for a good outcome. Stable is definitely positive and I am hoping with continued participation in the trial that you kick cancer's butt. I am your cheerleader rooting for you, praying for you each step on your journey. You have been an inspiration for me, my friend! 

Warmly,

Cathy

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

Hi Anne,  Your courage continues to encourage me and everyone on this site.  I'm glad you are stable.  We're praying for shrinkage.  Thank you for sharing your journey with us.  I love this board because everyone shares at different times and different reasons and we have such a wealth of information.  We have friendships with people who most of us have never met. 

You are courageous to go for a clinical trial.  I admire that.  I don't know if I could do that but would hope that I would go for it.

Resting is so critical, so I hope you are doing that.  I hope and pray this trial is a HUGE success for you.

You are one of my Peach hero's. 

Jeanette

txtrisha55's picture
txtrisha55
Posts: 686
Joined: Apr 2011

So happy to hear the good news that you are stable.  Hopefully the one issue will not be an issue at all. While I do not have UPSC cancer I have the sister of it MMMT and any help on new drugs will one day help others.  I have started thinking about donating my body to UTSW Cancer center when I die but have not made the final determination yet.  They could possibly use it to do more testing and research but hopefully that is a long way off.  Congratulations again.  You, along with all the ladies, are in my prayers. trish

AWK
Posts: 364
Joined: Mar 2013

My biopsy of the new met showed abnormal cells with the type of malignancy undetermined.  Ugh!  And scans from Monday revealed my mets are starting to grow again.  So I am out of the trial and now moving into a different trial targeting one of my more prominent genomic mutations.  I am mentally up for the change and grateful to work with a team who looks for plan b without needing to.  

My anemia has been very challenging to manage. i had two transfusions last week.  All of my counts dove including white blood cells.  Hopefully my break in treatment will help me rebuild a bit.  And gain some weight back.  Lately it has been melting off.  And while I am happy to be down a couple of sizes I miss having energy!

i will continue to keep you girls posted!  Still Thriving!  Anne

molimoli
Posts: 514
Joined: Aug 2014

Thanks for showing us what being a warrior means. Yes stable is good news, as with this alligator we have to be thankful for small mercies.

I agree a  change of treatment and approach may be the best thing at this point.Nothing try ,nothing gets done. For us and generations to come you have given so much of you .We admire and thank you.

I am sorry beyond descriptive words that things did not quite go as hoped but it could be that a breakthrough is around the bend, stay strong my sister, and yes resolve to thrive amidst the raging waters.

Please relay our thanks and admiration to your husband for staying in the ring watching your back as you battle this beast , may the creator grant him a fresh dose of strength on every breath he takes. and reward him with you by his side for many years to come .For this I pray ,Hope,and Wish.

I am humbled by your grace Anne. Plenty love. Moli.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1688
Joined: Jun 2015

So sorry to hear this! Do you know when you will start the new trial?

I continue to say a special prayer for you every day.

Like Moli, I am in awe over your strength and courage. And, so darn appreciative of your willingness to continue on.

You are an inspiration and I thank you for keeping all of us informed.

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

I am sorry to hear your clinicial trial did not work out but hopefully, moving into a different one will work.  I too battle anemia and the lack of energy makes it tough to just get everyday things done.  You are in my thoughts, Anne.  

Take care,

Eldri

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Lou Ann M
Posts: 996
Joined: Feb 2015

I am so sorry the clinical trial didn't work out for you.  I was so hopeful for you.  The side effects that you were having sounded rather miserable.  Maybe the new one will not be so hard on you.  This anemia stuff is hard to deal with, maybe a little break will help you get some of your strength and energy back. You are in my thoughts and prayers.  Lou Ann

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Like all of us, I was hoping for better results for you, but as you say, you have a great team that you are working with and there are options.  You have my utmost admiration in how you are battling this disease and are an example of grace and strength.  I am so grateful for women like you who participate in these trials, to be so giving of yourself.  May your battle-worn body bounce back during this break and move on to the next trial with renewed strength and resolve.

You are in my thoughts always,

Chris

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Anne,

So glad you are being guided by such an on-the-ball team of phsicians and you've got your fighting spirit. Thin, but thriving! Will pray that your immune system gets bolstered by the iron, that your counts go up, that you can gain some energy back and that the next trial will be well-handled and successful. Inspired by you and praying for you.

-jane

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

and I was hoping the trial would continue to work for you-but with no adverse side effects. You are blessed with an incredible team of doctors who are forward thinking. With much needed rest, you will be stronger and better able to handle another clinical trial targeting your genome mutation. Wishing you well!

With Hugs and Warm Wishes,

Cathy

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Anne, as Cathy said above (so beautifully) you are in my thoughts more than you may know.

I am sorry to hear the first trial was working out but thrilled to hear your doctors immediately jump to something else without a break.  I think we can all "hear" your undeniable spirit as well.

Hugs.

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Sandy3185
Posts: 228
Joined: Oct 2013

I have so admired your courage and fortitude. I hope you will have a little time to recover and get your anemia and blood counts under control. I don't think I have ever heard you complain and I so admire your ability to keep on with such a positive attitude. You are a model and inspiration for all of us. I so hope this new trial will be the answer for you.  With hope and caring, Sandy

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