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Hodgkin's lymphoma

Vermin00

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This makes me feel MUCH better!

How hard would it be to get her transferred to him for this whole process?

If you express that you wish to have the care there at the clinic they will accommodate you....now BRian may know the person who gave the first opinion and endorse that person as a provider that he would trust to execute the plan and allow the care to be more local.... or if you are close to Avon, Fairview or strongsville- he may line things up with an associate there.... while staying intimately involved ...... there are benefits to being local if the right team is there to support but then again, they’d designed that center on main campus for a optimal experience.... they can make things work so it’s really convenient too, so it becomes one stop shopping at main.....ie- go in, get labs, see provider, get chemo, pick up meds on the way out...... repeat in two weeks with a video visit in between
 

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If you express that you wish to have the care there at the clinic they will accommodate you....now BRian may know the person who gave the first opinion and endorse that person as a provider that he would trust to execute the plan and allow the care to be more local.... or if you are close to Avon, Fairview or strongsville- he may line things up with an associate there.... while staying intimately involved ...... there are benefits to being local if the right team is there to support but then again, they’d designed that center on main campus for a optimal experience.... they can make things work so it’s really convenient too, so it becomes one stop shopping at main.....ie- go in, get labs, see provider, get chemo, pick up meds on the way out...... repeat in two weeks with a video visit in between
Not super close but I think she wants to be up there which is all that matters to me.

Appreciate your time!
 

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@Vermin00

R-CHOP is what they want to do.

They are making her wait 4 weeks to see if she can get the vax before she starts which I don't think she would do either way.
 

Vermin00

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@Vermin00

R-CHOP is what they want to do.

They are making her wait 4 weeks to see if she can get the vax before she starts which I don't think she would do either way.

Did they specify the subtype of Hodgkin’s lymphoma? Sounds like nodular lymphocyte predominant.......As far as the vax goes, a lot of people are trying to get that done as when the lymphoma healthy B cells and T cells will be sacrificed as well..... ideally Ohio will move cancer patients into the high risk group and they could get this vaccine rolling.....that damn virus.....RCHOP is pretty well tolerated so that is good
 

America 1st

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Did they specify the subtype of Hodgkin’s lymphoma? Sounds like nodular lymphocyte predominant.......As far as the vax goes, a lot of people are trying to get that done as when the lymphoma healthy B cells and T cells will be sacrificed as well..... ideally Ohio will move cancer patients into the high risk group and they could get this vaccine rolling.....that damn virus.....RCHOP is pretty well tolerated so that is good
It's the 5% kind. I'm calling it the NHL Hodgkin's cuz I'm simple AF lol


We have a follow up in 4 weeks and have decided to start treatment ASAP at that point regardless.

Brian was money. Said he expects no decrease in life expectancy which is pretty amazing IMO.
She was afraid it would be that ABVD shit or whatever it's called.
 

Hgredmond

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I have experience with hodgkins unfortunately. My sister passed away from complications from her 2nd bone marrow transplant battling it 15 years ago. She was 24. The chemo treatment then was 90%. Effective then and probably is even more so now. The initial treatments were bad but nothing compared to the transplant. Your wife should be fine. You can expect her to be pretty much down and out a couple days after every round of chemo. If I remember correctly my sisters worst issues with the chemo were she became allergic to alcohol after the treatment and she had a bit of nausea and mouth sours. Of coarse she lost her hair which can be difficult emotionally for people. Radiation treatment I think was more severe in side effects. It will be a long haul but I would have every confidence that your wife will beat this. Just try to stay positive and do as much to help her as possible. I would look into getting her some sort of mental health counseling to help.
 

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I have experience with hodgkins unfortunately. My sister passed away from complications from her 2nd bone marrow transplant battling it 15 years ago. She was 24. The chemo treatment then was 90%. Effective then and probably is even more so now. The initial treatments were bad but nothing compared to the transplant. Your wife should be fine. You can expect her to be pretty much down and out a couple days after every round of chemo. If I remember correctly my sisters worst issues with the chemo were she became allergic to alcohol after the treatment and she had a bit of nausea and mouth sours. Of coarse she lost her hair which can be difficult emotionally for people. Radiation treatment I think was more severe in side effects. It will be a long haul but I would have every confidence that your wife will beat this. Just try to stay positive and do as much to help her as possible. I would look into getting her some sort of mental health counseling to help.
Thank you for sharing!

Bless your sister and your whole family!
 

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@Vermin00

Prednisone cause some people to have tenderness in their backs especially shoulder and neck?
 

America 1st

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Also- when is the vax scheduled?
Not. Can't find any and no major chain is giving phase one again until mid March unless fed gov changes course. Called to make sure at about 20 locations today.

We have a local pharm in town that I worked at in high school, my grandma retired from, and the owner and head pharmacist held me when I was a baby that I've put in a call to.

He is going to call me when someone on the schedule no-shows and they've already started a batch that they gotta use all 100 (sounds like Monday I'll be hawking my phone).
 

Vermin00

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Not. Can't find any and no major chain is giving phase one again until mid March unless fed gov changes course. Called to make sure at about 20 locations today.

We have a local pharm in town that I worked at in high school, my grandma retired from, and the owner and head pharmacist held me when I was a baby that I've put in a call to.

He is going to call me when someone on the schedule no-shows and they've already started a batch that they gotta use all 100 (sounds like Monday I'll be hawking my phone).

Where all was there findings on the PET scan? Lymphomas have some unique characteristics and I could certainly generate a hypothesis regarding the symptoms and the steroids.....generally the would not cause symptoms with the aching and such, if anything it decreases that stuff....however with hodgkins, sometimes the nodes or sites of involvement can become achy or tender with exposure or treatment for a brief period until the the volume of disease decreases- this may or may not be the case here, but some of the old text books talk about how one symptom patients would report is aching lymph nodes with exposure to alcohol.....that is now looked at as some old timer stuff but I believe the thought was some time of soreness from disease response and release of cytokines from expiring lymphocytes- again more theory but I suppose it’s possible....
 

America 1st

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Where all was there findings on the PET scan? Lymphomas have some unique characteristics and I could certainly generate a hypothesis regarding the symptoms and the steroids.....generally the would not cause symptoms with the aching and such, if anything it decreases that stuff....however with hodgkins, sometimes the nodes or sites of involvement can become achy or tender with exposure or treatment for a brief period until the the volume of disease decreases- this may or may not be the case here, but some of the old text books talk about how one symptom patients would report is aching lymph nodes with exposure to alcohol.....that is now looked at as some old timer stuff but I believe the thought was some time of soreness from disease response and release of cytokines from expiring lymphocytes- again more theory but I suppose it’s possible....
Just left breast and thigh so that wouldn't seem to correlate but is interesting none the less.
 

America 1st

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Did they do a bone marrow and was it involved?
No but Hill and two others reviewed bones and said we are cool beans.

Not sure how they did that but it was specifically discussed by hill and another guy.
 
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Vermin00

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No but Hill and two others reviewed bones and said we are cool beans.

Not sure how they did that but it was specifically discussed by hill and another guy.

Probably based on PET and peripheral blood counts.....the aching is odd and I hope your wife feels better man....wish I could be more helpful there.....
 

America 1st

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Probably based on PET and peripheral blood counts.....the aching is odd and I hope your wife feels better man....wish I could be more helpful there.....
Dude you're doing the Lord's work in here.

Lmk if I can send a bottle to a PO box for you to pick up or something (jk but seriously). Thank you so much!
 
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Anyone have experience with this in a family member?

Looking for general insight into what I should expect for my wife with the chemo treatments and so on. Haven't had a family member get chemo recently and have heard things aren't as terrible as they used to be?

Any insights would be appreciated.
Man I couldn’t make myself give your post a like for obvious reasons but I did just pray that God would glorify His name by healing your wife before she goes through chemo. I know this is a bold prayer but I believe He can make it happen. He will however have this play out according to His will.
Please keep me updated on her condition
 

Vermin00

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Dude you're doing the Lord's work in here.

Lmk if I can send a bottle to a PO box for you to pick up or something (jk but seriously). Thank you so much!

Thanks man- I’d be grateful for the updates and knowing things are going well.....happy to give whatever little input or insight I can- I truly believe things will go well but I also believe that it’s hard for people who haven’t been through this to imagine what it’s like and to that end- just want to offer whatever support I can.....who knows maybe at some point when all this madness is over there will be opportunity to celebrate over a single malt on the lake- lots of great spots up there
 

America 1st

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Man I couldn’t make myself give your post a like for obvious reasons but I did just pray that God would glorify His name by healing your wife before she goes through chemo. I know this is a bold prayer but I believe He can make it happen. He will however have this play out according to His will.
Please keep me updated on her condition
Much appreciated!

We are very optimistic she will have zero decrease in life quality or expectancy according to multiple doctors at Cleveland Clinic.

The Lord really has blessed us!

Bless you and your family as well. The Lord works wonders in wonderfully unexpected ways!
 

America 1st

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Thanks man- I’d be grateful for the updates and knowing things are going well.....happy to give whatever little input or insight I can- I truly believe things will go well but I also believe that it’s hard for people who haven’t been through this to imagine what it’s like and to that end- just want to offer whatever support I can.....who knows maybe at some point when all this madness is over there will be opportunity to celebrate over a single malt on the lake- lots of great spots up there
Bro you're telling me!

I'm trying to be so strong for her but it's the most scary thing I've ever imagined in my life.

We were 1 day past our first wedding anniversary when we got her diagnosis so at least we got that!
 

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