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Amy Jo

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Amy_Jo
Posts: 69
Joined: Apr 2018

Hey guys sorry I have been quite it's been a tough month. Unfortunately radiation did not work on the Mets on my spine. So I was hospitalized with a compression fractue to my spine. I received an ablation and kyphoplasty and I'm up walking again although it's not like before I'm moving. I received my first treatment of opdivo and yervoy mid May it made me really tired. I'm still keeping a positive attitude hoping the immunotherapy is successful. So far my scan showed spots in my liver lungs spine and groin. God is my strength hoping for the best. I appreciate everyone's prayers and thoughts. 

HDPete
Posts: 13
Joined: May 2017

If you don’t mind, what was your original Stage, type an grade? I wish you the best!

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

I was told I was stage 3 prior to surgery based on scans .This was based on the fact my turmor had reached my renal vein. I had scans prior to surgery which were clear. It was after surgery things blew up like fire works. My surgeon seems to think the lesions were there just to small to show on scans. My pathology report shows a grade 4 turmor. I know it's an agressive cancer I am hoping immunotherapy is the answer. 

HDPete
Posts: 13
Joined: May 2017

I hope it all works out for you, prayers sent. Good luck with everything Amy Jo!

foroughsh's picture
foroughsh
Posts: 771
Joined: Oct 2014

Amy-Jo

Sending you healing vibes

Stay strong

 

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

I'm feeling stronger now. I've been through so many surgeries and procedures in the past few months my body was just wiped out. I'm finally getting a chance to heal. I hope you continue to do well. Thank you for thinking of me. 

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Canadian Sandy
Posts: 459
Joined: Jul 2016

Prayers for you Amy-Jo. 

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

Thank you for your prayers and support. I hope you are doing well stay strong. 

Manufred's picture
Manufred
Posts: 215
Joined: May 2017

Amy-Jo,

Devastating to hear about your predicament.  I can only hope that the immunotherapy that has worked so well for me will get on top of your little monsters as well.

Getting tired is not uncommon with these drugs and you can probably do with all the rest you can get.  Have they checked your thyroid functions?  Ipi (Yervoy) can mess with that a little.

Best wishes,

Fred

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

Yes they have not checked my thyroid yet I just had a second opinion Friday with a different oncology group. I was very impressed with their care and she said she would check my thyroid. I have a treatment Monday then my care will transition to the new clinic. The new clinic had way more to offer and they are also scheduling me with a genetic physician as well due to being so young. My new oncologist offers a physician who specializes in RCC as well. My previous oncologist really didn't get much of a history or dicuss much of anything with me. Although he is a very kind person I want a physician who is agressive with my care he has been a wait and see guy. My new oncologist will check my thyroid with in the next 2 weeks. 

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Steph85
Posts: 155
Joined: Feb 2018

I'm glad you got a second opinion. I fully agree with the getting someone who is going to be aggressive.  I would do the.same. thank you for giving us all updates. Be strong! ***Hugs from Oregon!***

Stephanie

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Allochka
Posts: 837
Joined: Nov 2014

Amy Jo, hugs to you. I’ll keep fingers crossed it works!

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

I appreciate everyone's kindness - you have all been so kind and informative since I joined. Hugs for you as well. 

stub1969's picture
stub1969
Posts: 756
Joined: Jul 2016

You've had one heck of a run so far with RCC.  You're young and strong and will do great with this new treatment.  Keep us updated.

Stub

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

I pray my young age and the fact I was pretty healthy before this will help me weather this storm. I have moments of frustrations however I can't my worries to God he has carried me so far. One positive side to my journey has been seeing God's work through all my friends and family and complete strangers. The prayers and little gifts that trickle in to me it's amazing. 

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JoeyZ
Posts: 190
Joined: Mar 2018

We've been wondering about you and hoping you are ok. So happy to hear from you. We're all praying for Uncle Ned's visits for all of us. I especially hope this treatment works for you. Keep in touch!

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

Seemed like I was in and out of the hospital there for a bit. The most painful part was the compression fractue that the tumor on my spine caused. I had kyphoplasty which now I can get up and move around. By the time I was hospitalized I couldn't walk. I definitely can't move like I did prior to all of this however I can walk amen for that it's the little Miracles. My surgeon also did an ablation at the turmor site which we hope kills or slows it's growth. Thank you for thinking of me. 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

Glad you checked in, and wishing you all the best as you work through these latest challenges.

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

It's been a scary journey so far. Thank you for thinking of me. 

msjax
Posts: 20
Joined: Dec 2017

Thinking of you during these rough months ... hope the treatments bring you some relief.

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

Today has been a good day. I'm hoping this continues I have my next treatment Monday hopefully it will not cause a landslide of side effects. Thank you for thinking of me. 

msjax
Posts: 20
Joined: Dec 2017

You are in my thoughts ~ praying Monday goes well for you!

marosa's picture
marosa
Posts: 327
Joined: Feb 2015

wishing you all the best in your treatment and recuperation.  You are a brave and strong young woman. Sending you a big, big hug.

jazzgirl's picture
jazzgirl
Posts: 125
Joined: Nov 2017

Hi Amy Jo, I have been following what you are going through and have you and your family in my mind and heart every day.  Extra prayers tomorrow as you head into latest treatment.  May it go as well as possible for you.  Take care

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

Thank you all for all your thoughts and prayers it's so comforting. I completed my second treatment. I had a strange reaction half way through the Opdivo. All of a sudden I couldn't breath pain was shooting up my neck and down my back I turn blood red and felt like I was on fire. The doctor ordered benadryl and they restarted the infusion at a slower rate. It scared me. I completed treatment with no other events. Thanks again for everyone's thoughts it's so appreciated. 

jazzgirl's picture
jazzgirl
Posts: 125
Joined: Nov 2017

Hi Amy Jo,  That must have been so scary, on top of everything else.  Especially not being able to breathe.  More hugs as you keep walking through this.  Take care

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

Amy_Jo....the body is an amazing thing. Yes, you have youth on your side! I hope you rest and do what you need to do to allow your body to heal. I wish you all the best and am here for you xoxo.

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

Thank you ladies I'm feeling much better more and more like myself if that makes sense. Seems like since my diagnosis the word cancer has just echoed in my mind. I'm learning to stop reminding myself that cancer lives inside me. I'm living again. I hope I continue to feel better I'm spending my days enjoying my family and friends and most of all my beautiful children. I hope you all are doing well and wish the best to all. Special thanks to all of you for your encouraging words and support I would be lost without you guys. 

jazzgirl's picture
jazzgirl
Posts: 125
Joined: Nov 2017

The C word is like a big two-by-four hitting one in the head.  I'm so happy to read your sentence, "I'm living again."  As much as possible, live, love, play, enjoy your children.  They must be so happy to have you enjoying them.  Savor it all...

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