And it came back

[MtPeter04]

The leukemia that is. I went off treatment for about 2 months, saw the doc about a month ago, and my liver enzymes were high, but not too bad. When I got my blood work done today, they were through the roof. My ANC is almost dangerously low, my platelets are borderline "oh sh*t" low, liver enzymes are going nuts, and now my doc wants to start me on a more aggressive form of chemo in an attempt to wipe this out for good. Thankfully this is a slowly progressing disease, but it's clear the whole "watch and wait" thing isn't working out for me.

End rant.

 

[largemouth]

You have a "right to rant".
Good luck.
Live long and prosper.

 

[Sope Creek]

The leukemia that is. I went off treatment for about 2 months, saw the doc about a month ago, and my liver enzymes were high, but not too bad. When I got my blood work done today, they were through the roof. My ANC is almost dangerously low, my platelets are borderline "oh sh*t" low, liver enzymes are going nuts, and now my doc wants to start me on a more aggressive form of chemo in an attempt to wipe this out for good. Thankfully this is a slowly progressing disease, but it's clear the whole "watch and wait" thing isn't working out for me.

End rant.

Rant away Pete. For that shi^ I've got all day and night to listen.

 

[TheOriginalHappyGoat]

The leukemia that is. I went off treatment for about 2 months, saw the doc about a month ago, and my liver enzymes were high, but not too bad. When I got my blood work done today, they were through the roof. My ANC is almost dangerously low, my platelets are borderline "oh sh*t" low, liver enzymes are going nuts, and now my doc wants to start me on a more aggressive form of chemo in an attempt to wipe this out for good. Thankfully this is a slowly progressing disease, but it's clear the whole "watch and wait" thing isn't working out for me.

End rant.

Good luck. Rooting for you. Let me know if you're having a rough day, and I'll "forget" to delete nipples for a while on the forum.

 

[MyTeamIsOnTheFloor]

The leukemia that is. I went off treatment for about 2 months, saw the doc about a month ago, and my liver enzymes were high, but not too bad. When I got my blood work done today, they were through the roof. My ANC is almost dangerously low, my platelets are borderline "oh sh*t" low, liver enzymes are going nuts, and now my doc wants to start me on a more aggressive form of chemo in an attempt to wipe this out for good. Thankfully this is a slowly progressing disease, but it's clear the whole "watch and wait" thing isn't working out for me.

End rant.

Good rant.

My advice is move to Colorado for the chemo.
Weed helps.
According to OTFers.
Gummy bear dope.

 

[sdhoosier]

The leukemia that is. I went off treatment for about 2 months, saw the doc about a month ago, and my liver enzymes were high, but not too bad. When I got my blood work done today, they were through the roof. My ANC is almost dangerously low, my platelets are borderline "oh sh*t" low, liver enzymes are going nuts, and now my doc wants to start me on a more aggressive form of chemo in an attempt to wipe this out for good. Thankfully this is a slowly progressing disease, but it's clear the whole "watch and wait" thing isn't working out for me.

End rant.

Hang in there buddy and fight the good fight..they are making discoveries every day..sending good vibes your way!

Good luck. Rooting for you. Let me know if you're having a rough day, and I'll "forget" to delete nipples for a while on the forum.

Be sure and send me a smoke signal so I will be ready for that day.

 

[Eppy99]

Good luck. Rooting for you. Let me know if you're having a rough day, and I'll "forget" to delete nipples for a while on the forum.

Today feels like a rough day.

 

[outside shooter]

CLL?

Hang in there.

 

[Eppy99]

 

[TheOriginalHappyGoat]

@Eppy99 Don't push it. If I go to bed and Jordan or Stu has to delete your posts, you might not like the outcome.

 

[MtPeter04]

CLL?

Hang in there.

It’s actually a rare form of leukemia called Large Granular Lymphocyte (lgl) disease/leukemia. It’s a clonal expansion of a specific subset of CD8+ T cells (I think it’s the gamma/delta TCR). Fortunately they’re mature T cells which means this will be a chronic thing, but the bad side is, it’s a chronic disease that I’ll be dealing with for the foreseeable future.

 

[largemouth]

It’s actually a rare form of leukemia called Large Granular Lymphocyte (lgl) disease/leukemia. It’s a clonal expansion of a specific subset of T cells (I think it’s the gamma/delta TCR). Fortunately they’re mature T cells which means this will be a chronic thing, but the bad side is, it’s a chronic disease that I’ll be dealing with for the foreseeable future.

I hope you have a partner/live- in/spouse that helps you deal with this. I'd be lost without my wife.
Good luck

 

[crossfire74]

The leukemia that is. I went off treatment for about 2 months, saw the doc about a month ago, and my liver enzymes were high, but not too bad. When I got my blood work done today, they were through the roof. My ANC is almost dangerously low, my platelets are borderline "oh sh*t" low, liver enzymes are going nuts, and now my doc wants to start me on a more aggressive form of chemo in an attempt to wipe this out for good. Thankfully this is a slowly progressing disease, but it's clear the whole "watch and wait" thing isn't working out for me.

End rant.

You are right the disease is slow....so LIVE now. Fight hard even when you don't feel like it. It's worth it to live.

 

[RBB89]

The leukemia that is. I went off treatment for about 2 months, saw the doc about a month ago, and my liver enzymes were high, but not too bad. When I got my blood work done today, they were through the roof. My ANC is almost dangerously low, my platelets are borderline "oh sh*t" low, liver enzymes are going nuts, and now my doc wants to start me on a more aggressive form of chemo in an attempt to wipe this out for good. Thankfully this is a slowly progressing disease, but it's clear the whole "watch and wait" thing isn't working out for me.

End rant.

Damn. Keep fighting, man.

 

[kkott]

It’s actually a rare form of leukemia called Large Granular Lymphocyte (lgl) disease/leukemia. It’s a clonal expansion of a specific subset of CD8+ T cells (I think it’s the gamma/delta TCR). Fortunately they’re mature T cells which means this will be a chronic thing, but the bad side is, it’s a chronic disease that I’ll be dealing with for the foreseeable future.

Never had to deal with it, but I know chemo sucks the life out of you. Hang tough and hoping better days are ahead!

 

[MyTeamIsOnTheFloor]

I appreciate your effort.
Death to all gavelwhackers.

 

[iubud]

The leukemia that is. I went off treatment for about 2 months, saw the doc about a month ago, and my liver enzymes were high, but not too bad. When I got my blood work done today, they were through the roof. My ANC is almost dangerously low, my platelets are borderline "oh sh*t" low, liver enzymes are going nuts, and now my doc wants to start me on a more aggressive form of chemo in an attempt to wipe this out for good. Thankfully this is a slowly progressing disease, but it's clear the whole "watch and wait" thing isn't working out for me.

End rant.

You have our permission to go McNutt on that leukemia and kick its ass!! Whatever it takes.

 

[zeke4ahs]

The leukemia that is. I went off treatment for about 2 months, saw the doc about a month ago, and my liver enzymes were high, but not too bad. When I got my blood work done today, they were through the roof. My ANC is almost dangerously low, my platelets are borderline "oh sh*t" low, liver enzymes are going nuts, and now my doc wants to start me on a more aggressive form of chemo in an attempt to wipe this out for good. Thankfully this is a slowly progressing disease, but it's clear the whole "watch and wait" thing isn't working out for me.

End rant.

Every right to rant. That sucks. Sorry.

 

[MtPeter04]

So I saw the hematologist the other day, they basically drained me of blood, and the gist he doesn’t think it’s leukemia, but honestly has no idea what it is. It looks like the low dose chemo I was on before just served to dampen this disease. I’ve got no idea what it is, am more confused than ever, have a liver ultrasound at 130 today, and have to be completely sober to rule that out for my high liver enzymes. I’m 32 and have basically had a beer every day for the last 2 years. Withdrawal sucks. Didn’t get much sleep last night, and am sitting here sweating with 2 fans. In no way was I an alcoholic, but I did like a beer or two at night.

 

[largemouth]

One possibility.......

 

[VanPastorMan]

The leukemia that is. I went off treatment for about 2 months, saw the doc about a month ago, and my liver enzymes were high, but not too bad. When I got my blood work done today, they were through the roof. My ANC is almost dangerously low, my platelets are borderline "oh sh*t" low, liver enzymes are going nuts, and now my doc wants to start me on a more aggressive form of chemo in an attempt to wipe this out for good. Thankfully this is a slowly progressing disease, but it's clear the whole "watch and wait" thing isn't working out for me.

End rant.

I don't mind the rant. Keep looking forward in hope my friend.

 

[MtPeter04]

Just because I don’t find it necessary to start another thread about this, I thought I should add that i now have to get a liver biopsy. It was confirmed at my last oncologist visit that I do still have LGL leukemia, but it doesn’t explain my abnormally high (10x higher) liver enzymes. I set up a visit with the liver clinic sometime last week, but evidently my hematologist is calling them and telling them to see me ASAP. I’ve got no issue doing a liver biopsy, although it sounds scary as hell since they go in through a vein in the neck, but I want to know they’re thinking bc I’ve got no idea what the hell is going on. I’m not gonna do what they say without understanding their thought process. I’ve seen it too many times where people do what the doctor says just because the doctor said to do it.

End rant

 

[Liberty_Hoosier]

Keep us updated. Buddy our age who lived next to me at IU just stopped treatment. Brain cancer. We grew up in same area. (Liberty-Brookville)... weeks to live and will leave behind a wife and girl. We did a benefit for him last march. Got in contact with Gene Miller and via him Lori Zeller. She took an IU ball we sent with her and Cody signed it for benefit. Archie has sent a signed photo. Rocky Boiman of 700 wlw attended. (Former Colt) We served well over 1,000 chicken dinners and raise $60,000. Alex Meyer of Greensburg who is in the Angels organization sent signed baseballs for us from teammates, including Mike Trout. It was the single most proud thing I've ever been a part of organizing/doing. Unfortunately it doesn't look like his journey will last much longer. Im sure just like my buddy you have people pulling like hell for you. I hope you beat that crap.

 

[76-1]

Just because I don’t find it necessary to start another thread about this, I thought I should add that i now have to get a liver biopsy. It was confirmed at my last oncologist visit that I do still have LGL leukemia, but it doesn’t explain my abnormally high (10x higher) liver enzymes. I set up a visit with the liver clinic sometime last week, but evidently my hematologist is calling them and telling them to see me ASAP. I’ve got no issue doing a liver biopsy, although it sounds scary as hell since they go in through a vein in the neck, but I want to know they’re thinking bc I’ve got no idea what the hell is going on. I’m not gonna do what they say without understanding their thought process. I’ve seen it too many times where people do what the doctor says just because the doctor said to do it.

End rant

They have a much upgraded version of something similar to an ultra sound that supposedly can give your doctor a nearly equal view of what's going on in your liver to that of a biopsy (at least that's what my IU doctor told me)..., they absolutely hate it when you do this, (question their methods) but if I were you I'd at least ask if they've heard of what I'm babbling about here before you let them stick a needle in your liver...

The biopsy is always their "go to" move and in your case it may very well be warranted but I'd ask some questions and do some research first if you have time to do so...

I'll try to find the correct name for the scan if I can dig it up...

Edit -
I had only read the last couple of posts and didn't see that you had already had a liver ultra sound done... I'm not certain that what you had done is the same as what I'm writing about because I was told the one I'm speaking of was some sort of special, improved version so you still may want to research it a bit...

 

[largemouth]

Just because I don’t find it necessary to start another thread about this, I thought I should add that i now have to get a liver biopsy. It was confirmed at my last oncologist visit that I do still have LGL leukemia, but it doesn’t explain my abnormally high (10x higher) liver enzymes. I set up a visit with the liver clinic sometime last week, but evidently my hematologist is calling them and telling them to see me ASAP. I’ve got no issue doing a liver biopsy, although it sounds scary as hell since they go in through a vein in the neck, but I want to know they’re thinking bc I’ve got no idea what the hell is going on. I’m not gonna do what they say without understanding their thought process. I’ve seen it too many times where people do what the doctor says just because the doctor said to do it.

End rant

Good luck. Try to keep a positive outlook.
I would drink heavily, but that's probably bad for the liver.

 

[MtPeter04]

I actually said “f*ck it” last night and had a few bc I was annoyed with the entire situation, but I’ll go back to full sobriety tonight.

As for your buddy with brain cancer, liberty hoosier, I’ve already survived 4 surgeries, chemo, and radiation for a brain tumor. This coming week I’ve got 2 MRIs, and a doctors appointment for the brain tumor. Lost two close friends to GBM (glioblastoma multiforme aka brain cancer) and know how devastating it can be.

 

[Liberty_Hoosier]

My friend passed away yesterday from his bout with glioblastoma. If you went to IU we would have been there at the same time. I was there from the fall of 2003 through December 2007 before my student teaching. He was a year behind me and began in the fall of 04. We were varsity villa rats.

 

[zeke4ahs]

I actually said “f*ck it” last night and had a few bc I was annoyed with the entire situation, but I’ll go back to full sobriety tonight.

As for your buddy with brain cancer, liberty hoosier, I’ve already survived 4 surgeries, chemo, and radiation for a brain tumor. This coming week I’ve got 2 MRIs, and a doctors appointment for the brain tumor. Lost two close friends to GBM (glioblastoma multiforme aka brain cancer) and know how devastating it can be.

Any updates, Mt Peter?

 

[MtPeter04]

Any updates, Mt Peter?

I’ve got a few updates. Had the liver biopsy last week, and they went in through the jugular vein in my neck, down to my liver. I was terrified to say the least, but thankfully I was mostly sedated, and was able to return to work the next day. It didn’t really hurt until the end when the fentanyl wore off, but it was only like 5-10 mins of pain, so it wasn’t too bad

My twin brother is also in town, and while normally this would be a good thing, the dude will not stop talking. Like even for 5 minutes when he’s awake. We went golfing yesterday, and literally had a comment about every single shot I played etc. Thankfully he took care of me the day of the biopsy, but I’m beyond glad my dad is returning home from his recent trip today (he was visiting my older sister and brother in Denver and Grand Rapids)

I’ll know how the liver biopsy went in a week and a half when I see the liver doc again, and hopefully everything goes well.

 

[kkott]

I’ve got a few updates. Had the liver biopsy last week, and they went in through the jugular vein in my neck, down to my liver. I was terrified to say the least, but thankfully I was mostly sedated, and was able to return to work the next day. It didn’t really hurt until the end when the fentanyl wore off, but it was only like 5-10 mins of pain, so it wasn’t too bad

My twin brother is also in town, and while normally this would be a good thing, the dude will not stop talking. Like even for 5 minutes when he’s awake. We went golfing yesterday, and literally had a comment about every single shot I played etc. Thankfully he took care of me the day of the biopsy, but I’m beyond glad my dad is returning home from his recent trip today (he was visiting my older sister and brother in Denver and Grand Rapids)

I’ll know how the liver biopsy went in a week and a half when I see the liver doc again, and hopefully everything goes well.

Hang in there and give 'em hell! Glad you seem to be living and enjoying and not withdrawing. If being talkative is not how your brother usually is, I think it's just a reaction for him to your having health concerns, and him not sure how to deal with it and support you. Probably magnified with being a twin.

 

[VanPastorMan]

I’ve got a few updates. Had the liver biopsy last week, and they went in through the jugular vein in my neck, down to my liver. I was terrified to say the least, but thankfully I was mostly sedated, and was able to return to work the next day. It didn’t really hurt until the end when the fentanyl wore off, but it was only like 5-10 mins of pain, so it wasn’t too bad

My twin brother is also in town, and while normally this would be a good thing, the dude will not stop talking. Like even for 5 minutes when he’s awake. We went golfing yesterday, and literally had a comment about every single shot I played etc. Thankfully he took care of me the day of the biopsy, but I’m beyond glad my dad is returning home from his recent trip today (he was visiting my older sister and brother in Denver and Grand Rapids)

I’ll know how the liver biopsy went in a week and a half when I see the liver doc again, and hopefully everything goes well.

Keep fighting. This morning I spent time with a family whose daughter had a mass taken from her stomach (cancerous) and then they had to do surgery to remove fluid and take care of her perforated stomach and a few other issues. Across from us were some folks who were visiting their loved one in ICU and they were from Evansville IN. Since I was from Washington we had something to chat a bit about. When I go to Hospitals it reminds of a very scary truth. This world is not a safe place. This is why we fight and this is why you are going to as well.

 

[MtPeter04]

Just thought I'd give you guys an update. Last week I went on a new treatment regimen for the leukemia that involves corticosteroids and cyclophosphamide. While this treatment sucks mainly because it means I can't drink any alcohol, it appears to be working. Had blood work done this morning, and all of my numbers are, or are close to, normal. Even my absolute neutrophil count (ANC, white blood cells) was close to normal, and it never was with the previous treatment.

I'm not experiencing any side effects from either treatment, but I have to take the steroids after work because they make me b*tchy, and with my boss being kind of a dick, that's the last thing I need to be during the day.

 

[largemouth]

Bitch away, and good luck!

 

[MyTeamIsOnTheFloor]

Just thought I'd give you guys an update. Last week I went on a new treatment regimen for the leukemia that involves corticosteroids and cyclophosphamide. While this treatment sucks mainly because it means I can't drink any alcohol, it appears to be working. Had blood work done this morning, and all of my numbers are, or are close to, normal. Even my absolute neutrophil count (ANC, white blood cells) was close to normal, and it never was with the previous treatment.

I'm not experiencing any side effects from either treatment, but I have to take the steroids after work because they make me b*tchy, and with my boss being kind of a dick, that's the last thing I need to be during the day.

I love steroids.

When my RA gets going, I pop the Prednisone.

Glad you are getting good help.

 

[sdhoosier]

Just thought I'd give you guys an update. Last week I went on a new treatment regimen for the leukemia that involves corticosteroids and cyclophosphamide. While this treatment sucks mainly because it means I can't drink any alcohol, it appears to be working. Had blood work done this morning, and all of my numbers are, or are close to, normal. Even my absolute neutrophil count (ANC, white blood cells) was close to normal, and it never was with the previous treatment.

I'm not experiencing any side effects from either treatment, but I have to take the steroids after work because they make me b*tchy, and with my boss being kind of a dick, that's the last thing I need to be during the day.

Sounds encouraging.. keep fighting the good fight Pete

 

[zeke4ahs]

Just thought I'd give you guys an update. Last week I went on a new treatment regimen for the leukemia that involves corticosteroids and cyclophosphamide. While this treatment sucks mainly because it means I can't drink any alcohol, it appears to be working. Had blood work done this morning, and all of my numbers are, or are close to, normal. Even my absolute neutrophil count (ANC, white blood cells) was close to normal, and it never was with the previous treatment.

I'm not experiencing any side effects from either treatment, but I have to take the steroids after work because they make me b*tchy, and with my boss being kind of a dick, that's the last thing I need to be during the day.

Sounds like good news. Sucks you can't drink alcohol during treatment when you need it most! Weed?

 

[td75]

Prayers to you my friend..I hope you can fight the good fight. Hang in there like an Alabama tick!!

 

[MtPeter04]

Sounds like good news. Sucks you can't drink alcohol during treatment when you need it most! Weed?

Since in in California, weed could be an option, but I don't think my employer would like it if I failed a drug test.

 

[kkott]

Since in in California, weed could be an option, but I don't think my employer would like it if I failed a drug test.

Interesting predicament that creates: legal medicinally in the state and prescribed by a Dr (taking liberties here for the sake of the argument) but still banned by a company. I would imagine that will be amended in alot of company policies to allow exemptions for those with medical prescriptions. You ought to consider talking with HR if you're interested in trying it.