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.

[Sunnysailor in reply to Cateydid]

Hi- former SWFL resident and wife of an advanced prostate cancer patient. Get to a national cancer center. Mayo in Jacksonville, Moffitt in Tampa or Miami. It’s your right to get a second opinion. We left FL due to the subpar healthcare at University of FL. We moved back to our home state of MN for my husband’s treatment. You should be getting a PMSA scan at least a couple times a year. Mayo affiliated doesn’t = Mayo. I’ve heard Mayo Jacksonville is not even as good as Rochester. I hope things improve but your doctor should be giving you more details and walk you through the scan.

[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.

[MateoBeach]

I am so sorry to hear that he has such terrible pain and no adequate relief. I am just three months out from a near-fatal aggressive leg cellulitis in the muscles, joints and bones and septicemia that gave me terrible intolerable pain. Tramadol did nothing. Even after treatment with high dose antibiotics for months the pain was very slow to improve. Only Oxycocone/Oxycontin controlled it and allowed me to finally participate in therapy (PT and OT). My pain is down now to moderate most days and I can progressively taper the pain meds. I am learning to walk all over again. A pain management clinic may provide a more knowledgeable approach. Perhaps the MRI could be reviewed again to see if there is a connection between the pain location and cancer. Or what would be the alternative cause that they are proposing, if any? It needs to be sorted out. With empathetic understanding - Paul/MB

[Cateydid in reply to MateoBeach]

Thanks for your note. The onc did prescribe more oxy today….hopefully enough to make PT bearable!!

[j-o-h-n]

May you and your Joe have a great 10 year celebration......Toast each other with your Lemonade.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Cateydid in reply to j-o-h-n]

exactly the idea!!!!