PET scan follow-up

[Cateydid]

I finally heard from the onc about my Joe’s recent PET scan. His PA said the doc said it ‘looks good’. This is the same doc who said Joe’s pneumonia was cleared up and his lungs ‘looked good’, when the report in Joe’s file noted pneumonia and that his lung was still collapsed……so I’m waiting for the radiologist report from the recent PET scan to be uploaded into Joe’s patient portal so I can read what the radiologist wrote.

They switched him from 50 mg of Tramadol 4 x’s a day to 10 mg of oxycodone 6x’s a day. He’s out of oxy, and the oncologist won’t refill it because the PET scan did not reflect that the pain is cancer related. Back to Tramadol.

So back to the ortho to start PT on the 11th…..which I cannot fathom given the pain he’s in with ANY movement!

We did get a referral to a pain management clinic (didn’t know that was a thing!)

In the meantime, my beloved spends much of each day sleeping, moaning in pain. His appetite has lessened(perhaps because he’s not doing anything?) He seems much more contemplative lately, and may even be staring at his phone less.

He does continue to talk about things he wants to do in the future….things he’s going to build; places we’ll go…..

…..I did have to cancel our 10th anniversary dinner cruise. 😞 I’m going to order in some of our favorite food and get all dressed up tomorrow night for an ‘at-home’ celebration. 🥳

I think I’ll serve lemonade as our beverage to bring home the point of how we deal when life hands us lemons!!!!

Blessings and best wishes to us all!!

Happy Independence Day (if you’re in the US)

Catey

[Sailing-Todd]

Hugs to you both

[Cooolone]

Best thing to do, is get to a Major Cancer Center and one rated in Excellence, one you can access, travel if you must. Have them provide a 2nd opinion or first of their own... But make no mistake about it, that it is there you'll receive the very best in diagnosis, treatment and care. Access to the best tech, best equipment, therapy and access to trials should the need arise. When you have doubts about your care team, don't hesitate, don't look back! Find those that are better and that have your health, QOL and care as their primary motivation.

I know this list was valid for 2023 not sure if it has changed this year... But you can research for yourself too.

BEST CANCER HOSPITALS

#1

University of Texas MD Anderson Cancer Center

#2

Memorial Sloan Kettering Cancer Center

#3

Mayo Clinic

#4

Dana-Farber Brigham Cancer Center

#5

UCLA Medical Center

Good Luck & Best Regards

[Cateydid in reply to Cooolone]

Thank you so much. His onc is affiliated with Mayo, but I don’t know that he’s gone to them with Joe’s case.

We’re on our way to the onc today for bloodwork, consult and infusion (Happy 10th wedding anniversary to us).

You may be right about getting yet another opinion! Thanks for your reply.

[dhccpa]

Hang in there-him and you. Sounds like he has an excellent ally. Discouraging when you believe your docs are giving mediocre or inaccurate feedback. I know the fedling.