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aloyouis said:
Got a call Wednesday morning you don't want to get. Both biopsies from last week (Lymph node removal from under my arm and bone marrow from my hip bone) are positive for advanced Hodgkin's lymphoma. You may remember I was having bad back pain in November 22. The lymph nodes were seen then.

We met with the oncology team at 1pm today to get the treatment plan and odds. I haven't said anything to anyone except my own immediate family and my closest friend here in MI. He is now spending the evening telling our friends (they knew something was wrong but not this). Now you know why I haven't been working out the last few months as we have been testing everything. They have removed over 8 liters from my lung sacks via catheter's over 4 sessions. 2 Each per lung. Filling up again but this new prednisone prescription will halt that.

I am young (55) and otherwise in good health ("other than that Mrs. Lincoln how did you like the play?") My blood work is better than it should be given stage 4+ so that is another positive. I feel pretty good as long as I stay on the prednisone twice a day. The doctors seem to hate that. They are worried about stomach upset and I am worried about FREEZING in my chair with blankets and a temp of 104+. Actually, sometimes higher until the ice packs land on my head and the back of my neck.

Odds? That is the question. I have advanced stage 4 Hodgkin's Lymphoma. I lit up the PET Scan like a Christmas Tree from my shoulders to my hips all bones and all lymph nodes. There is a spot on my liver. The treatment plan includes 3 chemo drugs and a brand new (Approved last Saturday new) immunotherapy drug. The port goes in my chest next week and the hell fire goes in 3 days later every 14 days for 6 months. Trip to Europe with the Fam is cancelled for this summer. Shooting for the South Pacific in January. I will do all I can to live my life through this.

60-70% survival for 5 years if this cocktail works. Caught earlier (when I presented massive symptoms, different post) would take those odds to 80-95%. If this cocktail proves ineffective, we move to targeted radiation. After that bone marrow replacement.

I am gonna be ill for a while due to very aggressive treatment plan I have requested and will get.

The wife's an absolute ROCK and the kids (22,23,24) are holding up. As am I.

Prayer works and I would really appreciate it if you are so inclined. It only takes moment and He knows who you are referring to. 3 seconds is all it takes.

Nothing needs to be said here. Just pray, please.

I will post something here from time to time and will post football like usuall unless I just don't feel like it. I will be reading for sure.

Thank you.

Jimmy (Aloyouis)
Click to expand...
I can't say I understand all you are going through. That just would not be true.
But I can tell you what I have learned about living with my own conditions
I am terminal and it is OK. Like you I have a great group of people who have been supportive of me.
I found one of the things that help me cope was learning how to forgive. I have forgiven most every one that I felt had done me wrong
I have also reached out to seek the forgiveness of those I have hurt. Lastly I am trying to learn how to forgive myself for the many things I have done that I could have done better.
My faith has helped and I talk with my God often. I don't hear back as much as I would like to. I have added you and your family to my conversations asking that you are given His mercy and strength to accept what ever may come. Just remember we never have to walk this path alone.
Blessings my friend. JP
 
aloyouis said:
Got a call Wednesday morning you don't want to get. Both biopsies from last week (Lymph node removal from under my arm and bone marrow from my hip bone) are positive for advanced Hodgkin's lymphoma. You may remember I was having bad back pain in November 22. The lymph nodes were seen then.

We met with the oncology team at 1pm today to get the treatment plan and odds. I haven't said anything to anyone except my own immediate family and my closest friend here in MI. He is now spending the evening telling our friends (they knew something was wrong but not this). Now you know why I haven't been working out the last few months as we have been testing everything. They have removed over 8 liters from my lung sacks via catheter's over 4 sessions. 2 Each per lung. Filling up again but this new prednisone prescription will halt that.

I am young (55) and otherwise in good health ("other than that Mrs. Lincoln how did you like the play?") My blood work is better than it should be given stage 4+ so that is another positive. I feel pretty good as long as I stay on the prednisone twice a day. The doctors seem to hate that. They are worried about stomach upset and I am worried about FREEZING in my chair with blankets and a temp of 104+. Actually, sometimes higher until the ice packs land on my head and the back of my neck.

Odds? That is the question. I have advanced stage 4 Hodgkin's Lymphoma. I lit up the PET Scan like a Christmas Tree from my shoulders to my hips all bones and all lymph nodes. There is a spot on my liver. The treatment plan includes 3 chemo drugs and a brand new (Approved last Saturday new) immunotherapy drug. The port goes in my chest next week and the hell fire goes in 3 days later every 14 days for 6 months. Trip to Europe with the Fam is cancelled for this summer. Shooting for the South Pacific in January. I will do all I can to live my life through this.

60-70% survival for 5 years if this cocktail works. Caught earlier (when I presented massive symptoms, different post) would take those odds to 80-95%. If this cocktail proves ineffective, we move to targeted radiation. After that bone marrow replacement.

I am gonna be ill for a while due to very aggressive treatment plan I have requested and will get.

The wife's an absolute ROCK and the kids (22,23,24) are holding up. As am I.

Prayer works and I would really appreciate it if you are so inclined. It only takes moment and He knows who you are referring to. 3 seconds is all it takes.

Nothing needs to be said here. Just pray, please.

I will post something here from time to time and will post football like usuall unless I just don't feel like it. I will be reading for sure.

Thank you.

Jimmy (Aloyouis)
Click to expand...
Sweet Jesus....so sorry to hear this man.

I'm pulling for you. I'm not religious but I can send over positive thoughts and vibes via electrons and protons your way from our little island here. I wish you all the luck of the Irish to beat this. You can do this, You're Bill Belichick facing the cancer cells in the press corp. Harbour your inner Bill and when the cancer cells are trying to bring you down, just tell the cancer "We're onto Chemotherapy, we're onto Chemotherapy".
 
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aloyouis said:
Got a call Wednesday morning you don't want to get. Both biopsies from last week (Lymph node removal from under my arm and bone marrow from my hip bone) are positive for advanced Hodgkin's lymphoma. You may remember I was having bad back pain in November 22. The lymph nodes were seen then.

We met with the oncology team at 1pm today to get the treatment plan and odds. I haven't said anything to anyone except my own immediate family and my closest friend here in MI. He is now spending the evening telling our friends (they knew something was wrong but not this). Now you know why I haven't been working out the last few months as we have been testing everything. They have removed over 8 liters from my lung sacks via catheter's over 4 sessions. 2 Each per lung. Filling up again but this new prednisone prescription will halt that.

I am young (55) and otherwise in good health ("other than that Mrs. Lincoln how did you like the play?") My blood work is better than it should be given stage 4+ so that is another positive. I feel pretty good as long as I stay on the prednisone twice a day. The doctors seem to hate that. They are worried about stomach upset and I am worried about FREEZING in my chair with blankets and a temp of 104+. Actually, sometimes higher until the ice packs land on my head and the back of my neck.

Odds? That is the question. I have advanced stage 4 Hodgkin's Lymphoma. I lit up the PET Scan like a Christmas Tree from my shoulders to my hips all bones and all lymph nodes. There is a spot on my liver. The treatment plan includes 3 chemo drugs and a brand new (Approved last Saturday new) immunotherapy drug. The port goes in my chest next week and the hell fire goes in 3 days later every 14 days for 6 months. Trip to Europe with the Fam is cancelled for this summer. Shooting for the South Pacific in January. I will do all I can to live my life through this.

60-70% survival for 5 years if this cocktail works. Caught earlier (when I presented massive symptoms, different post) would take those odds to 80-95%. If this cocktail proves ineffective, we move to targeted radiation. After that bone marrow replacement.

I am gonna be ill for a while due to very aggressive treatment plan I have requested and will get.

The wife's an absolute ROCK and the kids (22,23,24) are holding up. As am I.

Prayer works and I would really appreciate it if you are so inclined. It only takes moment and He knows who you are referring to. 3 seconds is all it takes.

Nothing needs to be said here. Just pray, please.

I will post something here from time to time and will post football like usuall unless I just don't feel like it. I will be reading for sure.

Thank you.

Jimmy (Aloyouis)
Click to expand...
Damn man. Praying for you and keeping you in my thoughts.
 
Patriots-Lifer said:
I can't say I understand all you are going through. That just would not be true.
But I can tell you what I have learned about living with my own conditions
I am terminal and it is OK. Like you I have a great group of people who have been supportive of me.
I found one of the things that help me cope was learning how to forgive. I have forgiven most every one that I felt had done me wrong
I have also reached out to seek the forgiveness of those I have hurt. Lastly I am trying to learn how to forgive myself for the many things I have done that I could have done better.
My faith has helped and I talk with my God often. I don't hear back as much as I would like to. I have added you and your family to my conversations asking that you are given His mercy and strength to accept what ever may come. Just remember we never have to walk this path alone.
Blessings my friend. JP
Click to expand...

This is such great advice. I have some letters too write before to long.

Thank you.

PS- He hears you. You may not hear Him, but He hears you.
 
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Getting the first dose of the cocktail right now.

Doses 2-4 happen in the hospital tomorrow where I will stay for a couple of days. This seems unusual to the staff here so I wonder what the oncologist is concerned about…

I am hungry as I type this but I also smell metal (can metal be smelled?).
 
aloyouis said:
Getting the first dose of the cocktail right now.

Doses 2-4 happen in the hospital tomorrow where I will stay for a couple of days. This seems unusual to the staff here so I wonder what the oncologist is concerned about…

I am hungry as I type this but I also smell metal (can metal be smelled?).
Click to expand...
You absolutely can smell metal.

Good luck tomorrow. @aloyouis , you got this. 👍
 
Change in plans.

Almost comically, I broke a tooth on a nut in a snickers bar when I got home yesterday.

No chemo with this going on due to risk of infection. 9:30am root canal and then chemo resumes in hospital tomorrow.

When it rains it pours. My dentist is a good friend from the club. Had to spill the beans.

I can only laugh.
 
Good and (I hope not) bad news.

1/4 of the initial treatment plan my oncologist requested was denied by Blue Care of Michigan. Nivolumab (Opdivo) was only recently approved for treatment on June 4th, 3 days before my treatment plan meeting. It is an immunotherapy rather than a 4th chemo drug. $24k/dose.🤬 and 17 doses over the next 6 months. After denial my doctor initiated an immediate "peer to peer" review which was denied as well by BCoM. I started treatment with an older drug yesterday (Adcetris) that is actually a 4th chemo. Side effects are worse and outcomes less good. Sucky.

Prior, both my oncologist group and a friend that happens to be a cancer researcher at U of M opened requests with the patient assistance folks at Bristol Myers Squibb. They approved the drug for free this morning. This is great for my treatment! It is also sobering as to the seriousness of my condition. I mean, I am fully aware. Nobody has pulled punches (doesn't work with me), but the great news of the getting the drug also speaks to the desire for BMS to get the drug approved for more instances. The use case for me is "off label" as I don't meet the conditions (hence the denial). The current approval is for patients that have already not responded well to treatment. If BMS can show efficacy for first time treatment patients that would be huge boon for the drugs use numbers.

Either way, getting the drug does not change my starting point. It does have potential to change my end game. I WILL TAKE IT!!!
 
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aloyouis said:
Good and (I hope not) bad news.

1/4 of the initial treatment plan my oncologist requested was denied by Blue Care of Michigan. Nivolumab (Obdivo) was only recently approved for treatment on June 4th, 3 days before my treatment plan meeting. It is an immunotherapy rather than a 4th chemo drug. $24k/dose.🤬 and 17 doses over the next 6 months. After denial my doctor initiated an immediate "peer to peer" review which was denied as well by BCoM. I started treatment with an older drug yesterday (Adcetris) that is actually a 4th chemo. Side effects are worse and outcomes less good. Sucky.

Prior, both my oncologist group and a friend that happens to be a cancer researcher at U of M opened requests with the patient assistance folks at Bristol Myers Squibb. They approved the drug for free this morning. This is great for my treatment! It is also sobering as to the seriousness of my condition. I mean, I am fully aware. Nobody has pulled punches (doesn't work with me), but the great news of the getting the drug also speaks to the desire for BMS to get the drug approved for more instances. The use case for me is "off label" as I don't meet the conditions (hence the denial). The current approval is for patients that have already not responded well to treatment. If BMS can show efficacy for first time treatment patients that would be huge boon for the drugs use numbers.

Either way, getting the drug does not change my starting point. It does have potential to change my end game. I WILL TAKE IT!!!
Click to expand...
I hope this all works out for you, my friend.
If I read this correctly, you can't let your hatred of all things Wolverine stand in your way of getting this treatment. :lol:
 
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