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Haven’t been around much lately

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

i have been trying to read everybody’s post, but have been having trouble with that.  It seems like all of my concintr is gone.  Same with writing. Thinking is hard.  So many new people that I want to welcome.  It seems like we are getting more and more new people on this board, which is sad.  Just wanted to let all of you know how much I really care about you and that I pray for all of you.

my faith and hope is still strong and with me, but my physical strength has gone down hill. My oncologist is puzzled, he can’t find much information on others who are at same place i am.  He is not a pessimist and neither am I,  I have only one tumor tha is still growing near my spine and Vena Cava. He doesn’t think that the Radiologist can radiate it any mor.  We have use up the chemo that are known to work  and I seem to be nearing the end of Keytruda.  Yesterday he presented my case to the Tumor board to see if they had any ideas.  tomorrow I have a biopsy to send to Foundation One to see if they have any ideas.  I still have good days my bad days consist of days when my lower right side of my back hurts unbelievable.  Everyone agrees that the tumor is sitting on a clump of nerves.  There is hope out there and neither my oncologist or I are ready to give up. One good thing is that my CA125 dropped from 428 to 302

sending Hugs and prayers to all of you my wonderful friends

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

I pray for you at this moment.... I do know how you feel in that I keep going up and down also.   When this is painful, it is really painful.  Have you tried marijuana?  Is surgery possible? Have you gotten in touch with any of the other hospitals  with clinical trials?  I really don't have many answers, but I am so very sorry to learn that you are suffering.  My heart hurts for you.

 Please ask a family member or friend to periodically let us know how you are if you ae unable to do it.  I will keep praying for you and if theres anything more that I can do, I will be glad to, just ask.

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

i haven’t tried Marijuana as of yet.  I might consider the cannabis oil at some point. Because it is so close to my spine and Vena cava vein that surgery is not a very good option.  My oncologist keeps track of clinical trials that might work and even a few things outside of the Thelma of trials.  We just have to find the right thing. And I really think that that is prayer.  Thanks for yours

Soup52's picture
Soup52
Posts: 888
Joined: Jan 2016

Lou Ann as Always I pray for your strength. Hoping for your pain relief.

EZLiving66's picture
EZLiving66
Posts: 1305
Joined: Oct 2015

I'm so sorry you're still in pain. Hopefully you'll get good news on your tumors and they can match a drug to tackle it.  I miss seeing you here but understand about the concentration problems. 

Love, 

Eldri 

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

 You’re in all of our prayers along with everybody on this board. But you are one of our special ones. I just registered for our state’s medical marijuana program. It’s not up and running yet. They anticipate March but I figured what the heck. Funny because I’ve never even smoked. But I figure all options are on table now, huh?  Hang in there you brave woman!  

janaes
Posts: 728
Joined: May 2016

Lou Ann so good to hear from you. Im sorry you are in paon.  I m praying for you and your doctors. Thanks for chimming in.

Lots of love janae

janaes
Posts: 728
Joined: May 2016

Sorry i mean pain

evolo58
Posts: 293
Joined: Dec 2017

I am so sorry to read this. Hope the tumor board finds a safe and effective alternative.

MAbound
Posts: 797
Joined: Jun 2016

Thank you for the update. It so speaks to your strength and character that you do this in spite of the difficulties you are dealing with. Your attitude of keeping at it in spite whatever this beast throws at you is amazing and an example for us all to remember when the going to gets rough at times.

I second Hen Hills suggestion that you ask family members to help you with your posts if possible. We're all sending you our prayers and strength that your doctor's and tests can still pull another rabbit out of the hat for you, even if it just helps to alleviate the pain you are in. 

Jairoldi's picture
Jairoldi
Posts: 195
Joined: May 2017

Sorry to hear your strength is zapped buy happy to see your post. I read more than write on this board and always find you to be such encouragement...especially when you often add that you've had more good days than bad. I cling to that when thinking about my own future with upsc. Like the others have expressed, here's to the tumor board being creative and formulating a good plan for you.

Jayne

RB773
Posts: 9
Joined: Aug 2017

So sorry to hear what you are going through. 

I second others comments: you are an inspiration to others and wish you the best.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2528
Joined: Mar 2013

Lou Ann, our shining light, you are such an inspiration to us.  I have no doubt your oncologist gets up every day to work for YOU.  You and all the warriors are in my prayers.  Hugs dear one.

SF73
Posts: 251
Joined: Oct 2017

I am hoping that your medical team will come up with a safe and effective treatment. Please do stay hopeful. 

Northwoodsgirl
Posts: 499
Joined: Oct 2009

Thank you Lou Ann for posting despite your pain and decrease in abilities to concentrate. You really are an amazing and inspiring survivor. Your sisters on this site have benefited greatly from your willingness to open your heart and mind to us as we each have endured the fight against cancer. Keeping you in my prayers...sending my guardian angel to strengthen yours. ((Hug))

Lori 

dgrdalton's picture
dgrdalton
Posts: 47
Joined: Jun 2017

Praying for healing, comfort and peace for you!

derMaus's picture
derMaus
Posts: 537
Joined: Nov 2016

It's so good to hear from you, Lou Ann!  Your presence was sorely missed. I'm very sorry about the pain, of course, but also pleased that nothing new has cropped up; the whack-a-mole aspect of this d**n cancer is the hardest part and, if you haven't got any new moles, that's far preferrable to the alternative. Thank you for the update and know that you're in my prayers. Please keep us posted and know that we're all there for you. 

saltycandy13
Posts: 167
Joined: Dec 2017

I'm new but I wish you the best and hope for you, aside from prayer.  I meet with my Priest whenever I can.  God be with you and give you strength and light and most of all: love from all of us

Karen

barnyardgal
Posts: 187
Joined: Oct 2017

I hope your doctor comes up with a great plan, and that you get your energy back! Keeping you in my thoughts and prayers.

 

Veronica

MoeKay
Posts: 191
Joined: Feb 2004

Hi Lou Ann,

So sorry that you are experiencing pain and loss of energy.  However, it sounds like your oncologist is determined to come up with a new plan of action.  He sounds like the kind of individual who will leave no stone unturned.  My thoughts and prayers are with you. 

MoeKay

 

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Lou Ann,

I hope that you can feel all of the positive wishes sent your way by all your "sisters".  You are an inspiration and in your messages I see your warmth and kindness.

Thank goodness for you!

Susan

 

rcdeman
Posts: 256
Joined: Aug 2016

Dear Lou Ann,

I am very glad to hear from you. Your presence here on this board is truly encouraging.

However, I am sorry to hear that your physical strength has gone downhill. The drop in CA-125 is encouraging. Don't lose hope and stay strong. I am praying for you each day.

Love,
Rebecca

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

So sorry that things are not going well, LouAnn. I hope you get good news and there is something they can do for you.

cindy0519
Posts: 173
Joined: Nov 2015

Oh Lou Ann.  I read your post on the Uterine FB group and tried several times to respond but just simply couldn't find the words for some reason.  You have always been, and are now such a shining beacon of strength and hope.  I pray that you find comfort and that between Foundation One and your Onco they come up with a plan that helps you to be more comfortable at a minimum. 

 

 

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

to find the right words. Please know I'm thinking about you and hoping your medical team finds more more ammo for your battle. 

Have you ever tallied the number of children you taught? I am awed by the number of humans a good teacher helps to shape over a long career. What a contribution to our society. Thank you.

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

Just a shout out to let you know I am thinking of you and keeping you in my prayers.  May God keep you strong.

cheerful
Posts: 244
Joined: Apr 2011

Hi LouAnn:

  I will keep you in my thoughts and prayers.  I do hope that your oncologist can continue to help you battle UPSC. It sounds as if he is a great oncologist and is really helping you.   I am sorry to hear that you are in pain.  That is good news that your CA level has come down a bit. Hopefully, it will continue to come down even more. It is great that you have such a good attitude as that is so important.

  Hopefully, they will come up with a "cure" for our cancer. That would be such great news. Do keep us ladies posted.  

Cheerful

a/k/a Jane

MrsBerry
Posts: 102
Joined: Dec 2017

Lou Ann, I am new here, just wanted to say Hello and let you know I am one more soul sending you love and light. 

 

Hugs, MrsBerry

Donswife48
Posts: 289
Joined: Nov 2015

Love you and praying for you.  You are my warrior woman.  Hugs Nancy

Gardena
Posts: 102
Joined: Jan 2016

I'm sorry to read you're having pain. I went thru a bout of pain last year and I empathise with you - it can be debilitating. Opioids didnt get rid of my pain so I tried cannabis and it worked for me while my docs sorted out the source of my pain/treatment plan.

I'd like you to know I have looked to you many times as an inspiration. Your phase, 'you've had more good days than bad' when dealing with this disease has helped center me on my bad days and you always encourage us on this hoard to have hope. You are an incredible example of hope as you warrior on. You rock Lou Ann. Thank you for being you and being on this board. You're in my heart and in my prayers, and I hope you find pain relief soon! 

And congratulations on the lower ca125!

Gardena

 

 

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

I'm so sorry to hear the spinal tumor hasn't responded to treatment and that you're dealing with a lot of pain. At the same time it's also good to hear that there is no new spread and your CA 125 is down. You're an incredible warrior and an inspiration for me and so many others who find ourselves dealing with this challenge! Thinking of you and hoping that between your onco and Foundation One there's an option that will work for you!

 

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

 

Lou Ann,

 

I too do not come to the site a lot any more.  I am so sorry to hear your news.  I pray daily for all the ladies, their families and caregivers.  I pray that you and your dr keep a positive attitude because that is key.  No one knows their expiration date so as long as there is hope there is a chance that some new drug will be found. 

 

I wish you find the strength to hang in there.  Keep us posted and we all we keep praying for you. trish

 

MugsBugs
Posts: 103
Joined: Jan 2018

Lou Ann - I am new to this group and I am so sorry that you are going through this!  You will be in my prayers -  good luck!

Big Sister 5
Posts: 18
Joined: Feb 2017

Lou Ann,

My sister used marijuana during the chemo treatments and it was very helpful. You may want to try it. I am praying for you and asking for Jesus to hold you tight! 

Hugs to you.

 

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Oh Lou Ann! I haven’t been on the board in a long time and was so sorry to see your post. I so hope the doctor can find a way to relieve your pain. Maybe a nerve block? I agree with others who have recommended marijuana, it has been a great help to several people I know who suffer from chronic pain. My granddaughter is only 21 but has been afflicted with endometriosis since she was 16. The pain she suffers is quite debilitating and she has found that medical marijuana does offer some relief.

my thoughts and prayers are with you, Sandy

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