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Results of my Pet Scan

GGc0ok
Posts: 37
Joined: Oct 2020

Hi All

I had my Pet Scan yesterday.  Today had oncologist appointment.  All my lymph nodes have shrunk. Some 50%, some 75%.  Thats in a months time. I still have lymphoma but no treatment at this time. Will monitor me every three months like some of you are being monitored every three months. Today is a positive which will be what I concentrate on. 
I'm praying and thinking positive thoughts for us all 

 

GG the warrior 

 

 

 

 

PBL
Posts: 298
Joined: Jul 2016

That sounds like good news. Indolent lymphomas seem able to spontaneously regress - and occasionnally achieve remission iwithout any intervention - which explains why in the absence of worrisome symptoms "watch and wait' is considered a valid management approach. Delaying treatment has not demonstrably made any difference in event-free survival or overall survival, so, enjoy life as usual!

PBL

GGc0ok
Posts: 37
Joined: Oct 2020

Hi PBL

Yes it does sound positive, I'll take any positive news for sure. Watch and wait is a valid approach.  Sometimes the fleeting thought I'm like a time bomb waiting to go off. But when that happens I push it out of mind say a prayer, think positive and live my life. 
Thank you for your reply. 
Be well

GG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3623
Joined: May 2012

My oncologist told me 10 years ago that he was taught in Oncology Residency at Duke that when looking at the first CT after chemo had begun, you want to "see the difference from across the room."   That is, with side-by-side CT images of the same set of nodes, the amount of reduction should be obvious, even at a distance.   That is what you have achieved.

The trend over the last decade has been toward less harsh interventions, with better quality of life.  Active survellance is a term used more often than the older watch-and-wait, since A-S implies more frequent monitoring, with a trip point established in advance, signalling when active/curative treatments would be re-begun if necessary.  A.S. is extremely common with most prostate cancers, but PSA draws are manditory at least every six months.    

Your attitude today seems perfectly suited to what you have learned and planned.

GGc0ok
Posts: 37
Joined: Oct 2020

Hi Max

I just want to thank you for your uplifting words. Sending you a Hug and positive thoughts for your well being. 
GG 

FLmama
Posts: 20
Joined: Nov 2020

YAY FOR YOU! WooHoo! Such wonderful news- I am THRILLED for you! What a relief.

I hope you and the hubby are celebrating this weekend. Or relaxing-- whatever you feel like doing... BTW, I watched The Queen's Gambit and I binged it! SOO good! What should be next on my watch list?

I got my blood results--  no celiac :(  I am incredibly disappointed because of course it means I'm back to thinking that this is indeed L. But I am going to take my oncologist's advice and try not to worry, and see her again in February.

Again, congrats XO

 

GGc0ok
Posts: 37
Joined: Oct 2020

I was beginning to wonder what happened to my warrior sis, hadn't seen you in a while.  
I completely understand your feeling disappointed I would have been as well. Celiac was never mentioned to me.  

My oncologist said nearly the same as yours.  He said I'm not going to tell you not to worry because you probably will, but don't lose sleep over this. 
When I saw him on Wednesday he came in the room saying first and foremost they've shrunk all of them, I'm not saying that you don't have lymphoma but look.  He brought up the Pet Scan and everyone of them have shrunk. He did the math on all. Some 50% some 75% shrinkage.  He said we're not going to do anything at this time. I'm also to go back in February.  He told me to go to Az be with your daughter welcome your new grandchild. 
Yes its positive and believe me I'am relieved.  Sometimes I get to thinking am I a time bomb waiting to go off.  Then I'll chase the thought out of my mind. 
Celebrate no not yet.  My hubby is really homebound on oxygen 24/7.  I take care of him. 

Today I got up early went to Safeway to get all the stuff that my Instacart shopper couldn't find at Walmart.  

I cooked a fabulous supper for us was delicious. Shrimp boil and, Non rice pilaf. Totally all veggies. 

We're getting ready to watch The Crown, I really like it. This seasons about Diana
Have you seen Trial 4. It's a true story, I think only 8 episodes on Netflix 

Have a good evening. Let's keep our positive thoughts be our main thinking

Hugs to you my warrior sis

GGX

FLmama
Posts: 20
Joined: Nov 2020

I think I needed to step away for a bit because I was starting to obsess, and since I cannot do ANYTHING about it, it's just too upsetting. Had to put a mental pin in it. Meanwhile, I still have what feels like enormous nodes in my neck, smaller ones still palpable under jaw, on collarbones and in groin. Sigh. BTW, celiac was mentioned to me because I also have stomach issues, have for years and years.

I had to go today to an urgent care place because I thougt I had fractured my clavicle-- awful pain and swelling x 1 week. No trauma to the site so naturally mind goes straight to multiple myeloma but my bloodwork markers for that were negative and I had just had a chest CT scan so I know there's no mass there. Doc thinks strained and inflamed from some push-ups I had done a few days prior (and I am an active person! Depressing getting old.) Prednisone starting tonight so I pray I will be pain free soon. 

I am RIDICULOUSLY happy for you and your incredible update!!! So we both go back in February... maybe we have a combined virtual celebration Laughing  I may need to be rescanned if these buggers don't obvioulsy shrink at least a little! So can you make it out to AZ? Can your hubby make the trip? I hope you get to go- nothing like squeezing and loving a new baby...

Queesn Gambit was awesome- I was obsessed. I also love the Crown- finished season 4 then watched the Netflix special about Diana- cried my eyes out. Loved her so, so much. I did see Trial 4 and all I can say is WOW. Currently watching The Pharmacist- very depressing doc about this guy's actions to fight this crazy ocycontin addiction issue we have here in the US. Have you seen Schitt's Creek? I didn't love the first few episodes- they're okay, but OMG, it will priovide you with huge belly-laughs... highly suggest it! 

Sending love and hugs- XO

GGc0ok
Posts: 37
Joined: Oct 2020

Hi FLmama

OMG you won't believe what's been going on with me. One week ago last Sunday my pregnant daughter had to go to ER. She was in pain but it wasn't contractions.  She had higher BP. They monitored her then sent her home. Then following Tuesday she had her obgyn/midwife appointment all pretty good.  By that night she was in the hospital with preeclampsia.  Monitoring her and baby. Then she took a turn for the worse.  Had to be taken by ambulance to a hospital where they had NICU for babies 30 weeks. On Friday got touch and go for my daughter.  Saturday doctors said baby would be delivered that day. 
Im in California she's in Az.  I had to find someone to check in on Bobby and cook a meal for him. VA wasn't any help what so ever.  Then I called Nextdoor neighbors. They stepped up and did what we needed. I called airlines got a flight for 2 1/2 hours from when I made reservations.  I packed, showered, got my hubby situated in just over an hour.  i got there at 4:30-5:00 pm. I didn't make it for the birth but my oldest daughter was there and was her support person.  Baby made it and is thriving.  He weighed 1790gm just over 16".  My daughter got released and is doing well. I got to see her and Radley Hart baby boy on Sunday. I stayed until yesterday. Her sister will be there until at least next week.  
During the time I was gone my husband had emergency situations. He had started a new med prendesone which made his Blood Sugar go sky high. He got scared and his anxiety went through the roof.  I wasn't there to help him he needed me there.  Our neighbors continually were there for him.  Doctor was called etc.  He stopped the new med after taking it for two days. He started taking a lesser mg.  I'm home taking care of him monitoring his numbers.  
I realize this is not Lymphoma related but it's what's been happening.  Real life happens where we have absolutely no control 

I understand stepping away, I too step away sometimes it's overwhelming all that's here. 

Im thinking your overexertion may have inflamed the nodes.  It does seem to happen to me as well. My neck has been so sore Im noticing when I have no choice but to do things I probably shouldn't be doing.  

Let's keep our good thoughts and prayers ongoing keeping up our fight!

Sending hugs and love back at you

GGX

FLmama
Posts: 20
Joined: Nov 2020

Hi GGX!

Im so glad you reached out to me... You are a true warrior in every sense of the word. Fun nickname turned out to be a self-fulfilling prophecy!

I will message you shortly - thank you for thinking of me and I'm sorry I didn't see this sooner... I apologize from the bottom of my heart XO

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