gorgonzola
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- Joined
- Jul 21, 2020
oh jeez, hopefully it stays put for another 12 years...
Going Under the Knife
- Thread starter Harvey
- Start date
Warp daddy
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- Joined
- Jul 21, 2020
Just got bad news my immunity has crashed lost 80 % of the gain so must now isolate again
Im getting an infusion now of regularly scheduled stuff
Was also told today bcuz of heart related issues I am NOT a candidate for that C-Art process that my former asst dean had that put him miraculously back in good condition.
Waiting for additional lab data on the most critical dimension ( usually takes 4 days to get this complex report).
Discouraged yes but IF the results are ok will continue to be on an every two months schedule.
But I have to isolate because of the immunity issues which means masking up and no public appearances.they will continue current process every 2 months and if situation doesn't improve well then that presents different problem.
Not sure what that means hopefully it's still treatable and not terminal at this point.its in God's hands .
I'm staying positive I'm trying to deal with it as best I can. I can still be outside no problem which means I still can play golf but have to be careful to mask up if going to a store I think we will go to church virtually be safe
The weird thing is I feel fine even with the immunity crashing
Im getting an infusion now of regularly scheduled stuff
Was also told today bcuz of heart related issues I am NOT a candidate for that C-Art process that my former asst dean had that put him miraculously back in good condition.
Waiting for additional lab data on the most critical dimension ( usually takes 4 days to get this complex report).
Discouraged yes but IF the results are ok will continue to be on an every two months schedule.
But I have to isolate because of the immunity issues which means masking up and no public appearances.they will continue current process every 2 months and if situation doesn't improve well then that presents different problem.
Not sure what that means hopefully it's still treatable and not terminal at this point.its in God's hands .
I'm staying positive I'm trying to deal with it as best I can. I can still be outside no problem which means I still can play golf but have to be careful to mask up if going to a store I think we will go to church virtually be safe
The weird thing is I feel fine even with the immunity crashing
Sbob
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- Joined
- Apr 20, 2021
I don’t know if this is relevant to your situation but this drug has a lot of promise with stimulating the immune system.
Warp daddy
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- Joined
- Jul 21, 2020
Thanks SBob :
I usually get great pharmaceutical consul .
My son dr Jb is chief oncology pharmacist at a major medical center system in Manhattan has 33 yrs experience
His wife has same role at another major Med center in Manhattan both of their places have Med schools attached so are yooge into cutting edge Research
and their son is a a Rx' er. in Phoenix.
And my principal Onc doc here worked in Manhattan for years and was one of top docs at one of my sons former hospitals
and so I feel blessed these peeps are up on the latest developments in the field. But I'll run it by them.
Thanks for the feedback the critical question is Relevance to Waldenstrom's Macroglobulemeia diagnosis which is very rare BLOOD Cancer no tumors are involved . It affects (1in 250,000) is incurable but treatable disease..
Death if it occurs usually is not from WALDENSTROM'S but morbidity thatbl May result in other areas like Heart kidneys or the pancreas etc
My former assistant has had this now for 18 yrs but he had C_Art procedure yrs done in January he's six years younger had no history of heart problems
.I cannot undergo C_Art because of heart issues over past 16 years
AgainThanks for sharing
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Peter Minde
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- Jul 19, 2020
Keep fighting, Warp. We got your back.
Warp daddy
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- Jul 21, 2020
Thank you kind sir
Campgottagopee
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- Jul 20, 2020
Warp daddy
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- Jul 21, 2020
Thanks Camper your support means alot.
As you know Us ole hoopsters learned how get scrappy when faced with tough odds .....Never Give Up until the tank is empty
Hell I went out played this am . I'm feeling great not tired at all .
shot a 40 on a tough course. Btw stated using Volvek balls last couple rounds the results have been great off the tee .
and at 82 today averaged 226 on the holes requiring the Silly Stick .
Added bonus Met one of my favorite former docs and his wife on the third hole. they retired early he was chief of medicine at a place in Jersey and formerly in the same role at our hospital. They're a great couple so we had a long talk and renewed acquaintances .
I had really missed them there among the sharpest people and the most active in the community for doing stuff for people.
We had worked on some community committees and of course on the hospital board together
Made me really feel great to reconnect with these guys they are down to earth as hell and they continue and just do good s*** for the community just having received an award for organizing a joint friendship boatilla and festival with our Canadian sister city right across The St Larry
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Warp daddy
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- Jul 21, 2020
Great news tonight I got the lab results from the most critical benchmark
they are only up 8% from the lowest reading 4 months ago, but the irony is it's still lower than what the number was when UVM put me on the maintenance program and took me off chemo in May.
Bottom line I got to hear this from the doctor officially but that was my understanding after my treatment as long as the increase was under 25% Tuesday.
So I'll still be on a 2-month schedule and just get an immunity booster shot as necessary.
Still have to isolate until immunity comes up to a safe level but just staying on maintenance rather than going back on chemo or some other more rigid demanding regimen is a relief
God is good .
Again thank you for all the support you guys have given me over this journey it's been a big help
they are only up 8% from the lowest reading 4 months ago, but the irony is it's still lower than what the number was when UVM put me on the maintenance program and took me off chemo in May.
Bottom line I got to hear this from the doctor officially but that was my understanding after my treatment as long as the increase was under 25% Tuesday.
So I'll still be on a 2-month schedule and just get an immunity booster shot as necessary.
Still have to isolate until immunity comes up to a safe level but just staying on maintenance rather than going back on chemo or some other more rigid demanding regimen is a relief
God is good .
Again thank you for all the support you guys have given me over this journey it's been a big help
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Adirondack Johnny
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- Jul 25, 2020
If you could ski, what runs in NY would you hit this year? Maybe some of us could record some of your favorite runs this year? I know watching someone else ski can be boring, but I'd totally gopro some WF, Gore , or Bell runs for ya. Definitely others here that really get the goods.
