Need ideas post Xtandi and Zytiga

[Grumpyswife]

We had our first telehealth FaceTime call with the local MO yesterday to discuss my husband’s John’s recent bloodwork. He has been on Zytiga with dexamethasone and we knew his PSA was rising. It jumped 5 points in 6 weeks to 15.16 so the doc said to stop Zytiga and dexa and pretty much accept that there are no more treatment options for my 76 yo. I have never liked this doc’s attitude but he’s convenient. Also he’s a palliative care specialist and medical director for a hospice. He offered that help which we will eventually need.

John had been set to go to NIH for a PSMA scan but that has apparently been pushed back now possibly due to Covid19.

3 different MOs all recommend against chemo for John due to his frailty and cognitive impairment. Probably realistically, they have all felt it would lower his quality of life and limit our travel enjoyment. His pCa is metastatic To his lungs and luckily after 19 years no bone involvement or pain.

Yesterday I asked about Keytruda but was told he has to have satellite instability to be approved for that. His Foundation One test doesn’t show satellite instability—only PTEN deletion and TMPRSS ERG Fusion.

Thanks for any ideas from the super smart folks on here.

[Tall_Allen]

"His MO is discouraging him from chemo." -- Why?

[Hidden]

I have the same question, why are they discouraging him from chemo?

It is still a very good treatment option that he has. Chemo has the potential for improving his quality of life and extending his life.

I did not find the side effects that bad and the side effects are mainly 1 out of 3 weeks so it's tolerable for most. And he only has to commit to one cycle. He can quit any time if it's not helping.

Just something to consider.

[Grumpyswife in reply to Hidden]

Thanks for the ideas.

We have had two GU specialist oncologists plus our local oncologist tell us they wouldn’t recommend Chemo because of his Alzheimer’s and frailty. I had always assumed he would eventually have chemo but didn’t know we’d have to fight for it.

[pilot52]

You said one of the two words which a lot of patients use that perhaps puts one at risk. Convenience and We Like our doctor .....I am an Angel Flight Pilot and second time Stage 4 Patient...When I was at MD Anderson I met a gentleman from northern Pennsylvania . Very little money but a great attitude....Corporate Angle Flight flew him free on a Gulf Stream and MD Anderson put him up for free for 7 weeks of Proton Therapy in an apartment....I do not know where you live but there must be a research hospital in your neck of the woods....call them , reach out, I routinely fly people from Florida on a leg to Houston , MD Anderson ,,,,so get some feed back on this site who is good close to you....Oh there are hundreds of angels all over the States .....Good Luck Blue Skies ........Sky King and Penny (woof)

[Grumpyswife in reply to pilot52]

Thanks for your mercy missions.

I have gotten a few recommendations on here for area oncologists but none have fit the bill. They don’t think out of the box just SOC. Health care in GA is different then MN where I’m from. We have never hesitated to travel for care in ~20 years living with this curse, Mayo, Emory, Arizona, Florida, Kansas. Wonder how many miles we’ve done.

We did find a PA in MN who was better then any doc we’ve been to who I will soon consult via telehealth to pick her brain.

I don’t need to like the local guy As his personality is just arrogant and indifferent. Yes he is convenient and as we get older and sicker that makes a difference. Plus he is able and willing to dish out the pain meds and order hospice.

[leo2634]

First I'd like thank and ask God to bless Pilot52 AKA SkyKing for his choice of occupation. As for your problem we are all in this forum for a reason to seek out the best quality of life in our situation. I'm sure all my Brothers on here would agree that giving up is NOT and option ,if this Doctor is not giving you hope move

on . I see from your statement you've been to a few so go to a few more.

Do some research there are tons of new cutting edge treatments and trials you can look into. My suggestion is to find the right Doctor and get signed up for one. Never give up never surrender. Leo

[Grumpyswife in reply to leo2634]

Believe me I have always done research and managed to pull something out of the hat. But, like I said, these are different times.

[Ayra1 in reply to Grumpyswife]

Whose ur oncologist

[pilot52]

I am so glad you are still in the fight.....I personally go to Duke and MD Anderson so travel has been good to me....My last Lupron shot I got locally and they screwed it up.....?? Really?? Just reinforced why I travel ......Trust me..I get more out of the flights than my grateful passengers do...1. Gracie and I love to fly, 2. Their appreciation makes me feel useful...I got hooked right after the Haiti earthquake ....Blue Skies to all......

[j-o-h-n in reply to pilot52]

How about flying me to Costco..........

youtube.com/watch?v=mZzx5bp...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/22/2020 5:13 PM DST

[pilot52 in reply to j-o-h-n]

what kind of approach do they have in the parking lot?

[j-o-h-n in reply to pilot52]

With Caution!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/23/2020 5:40 PM DST

[tallguy2 in reply to pilot52]

It's certainly not an instrument approach.

[j-o-h-n]

For dumb asses like me:

Microsatellite:

Microsatellite instability (MSI) is a unique molecular alteration and hyper-mutable phenotype, which is the result of a defective DNA mismatch repair (MMR) system, and can be defined as the presence of alternate sized repetitive DNA sequences which are not present in the corresponding germ line DNA.Jan 22, 2018.

I'm on Keytruda for my lung melanoma (it's working so far).....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/22/2020 5:07 PM DST

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

Then I guess you have microsatellite instability. I always knew there was something different about you.

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

Wow, Thanks..... now I feel Important and Impotent ...........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/22/2020 9:33 PM DST

[ctarleton]

This article about "When Alzheimer's and Cancer Collide" might give some food for thought. It suggests weighing the two questions: "How advanced is the Alzheimer's?" and "What Type, Stage, and Cell Grade is the Cancer?"

verywellhealth.com/when-alz...

[Grumpyswife]

Thank you for that. Spot on for me and of what I have been weighing. I do have a friend whose husband is so advanced with Alzheimer’s that they have stopped pCa treatment and (I think) all of his medications.

For me it’s difficult to quit looking for treatments when that has been my normal for so long.