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I caught the cancer


Burt

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6 hours ago, Sbbruin said:

Well I guess a little update may be in order.  Got my feeding tube out last week (zero tubes in me, down from 6 originally) so I’m on only oral foods, which has been a real hit or miss.  Been on some solid foods for a few weeks, but i really struggle with nausea and (sorry) quite a bit of puking.  Just get food caught in what’s left of my esophagus.  Frustrating.  I’ve lost about 20 lbs so I guess there’s an Upside But I’ve been able to make it into work for a couple half days.  Working from home the other days.  Just can’t put as much into work as I probably need to, but pushing things forward as best I can.  Physical strength is pathetic.  A walk around the block feels like running a marathon.  Hopefully can turn that around soon.

…….

are you high harold and kumar GIF

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7 hours ago, Gatorubet said:

Baby steps, Bruin.  Why don’t you eat some outrageously, high butterfat percentage gourmet ice cream, with a Lipitor chaser.   At some level calories or calories

Lactose seems to be a particular problem.  They say that is not uncommon, but it will eventually pass.  

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12 hours ago, Sbbruin said:

Well I guess a little update may be in order.  Got my feeding tube out last week (zero tubes in me, down from 6 originally) so I’m on only oral foods, which has been a real hit or miss.  Been on some solid foods for a few weeks, but i really struggle with nausea and (sorry) quite a bit of puking.  Just get food caught in what’s left of my esophagus.  Frustrating.  I’ve lost about 20 lbs so I guess there’s an Upside But I’ve been able to make it into work for a couple half days.  Working from home the other days.  Just can’t put as much into work as I probably need to, but pushing things forward as best I can.  Physical strength is pathetic.  A walk around the block feels like running a marathon.  Hopefully can turn that around soon.

Glad to hear that you're progressing well through this even though it doesn't sound like a picnic. 

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  • 2 weeks later...
Outstanding.  I just got my first Opdivo immunotherapy infusion yesterday to try to get my immune system to kill any lingering cancer shitheads.  Challenge is that I am also on an immunosuppressive drug, Remicade, for an autoimmune condition.  So I have battling forces.  But they think it will still work.  
Give 'em hell, RD.  

That seems analogous to masturbating while looking at pictures of Danny Devito. You can do it!
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18 minutes ago, Sbbruin said:

Outstanding.  I just got my first Opdivo immunotherapy infusion yesterday to try to get my immune system to kill any lingering cancer shitheads.  Challenge is that I am also on an immunosuppressive drug, Remicade, for an autoimmune condition.  So I have battling forces.  But they think it will still work.  

Give 'em hell, RD.  

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38 minutes ago, Sbbruin said:

Outstanding.  I just got my first Opdivo immunotherapy infusion yesterday to try to get my immune system to kill any lingering cancer shitheads.  Challenge is that I am also on an immunosuppressive drug, Remicade, for an autoimmune condition.  So I have battling forces.  But they think it will still work.  

Give 'em hell, RD.  

Remicade binds to TNF-α, a tumor necrosis factor. Opdivo binds to the PD-1 receptor on T cells and blocks the interaction with PD-L1/PD-L2. They are different mechanisms of action. You should be fine taking them together but it probably hasn't been tested.

You have said it before but I can't remember if you are taking Remicade for UC/Crohn's or arthritis or psoriasis. Remicade can increase the risk of lymphoma and skin cancer (I think) but hasn't seemed to effect other cancer's in a statistically significant manner. 

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2 hours ago, Bevo said:

Remicade binds to TNF-α, a tumor necrosis factor. Opdivo binds to the PD-1 receptor on T cells and blocks the interaction with PD-L1/PD-L2. They are different mechanisms of action. You should be fine taking them together but it probably hasn't been tested.

You have said it before but I can't remember if you are taking Remicade for UC/Crohn's or arthritis or psoriasis. Remicade can increase the risk of lymphoma and skin cancer (I think) but hasn't seemed to effect other cancer's in a statistically significant manner. 

Thanks for the insight.  There have been studies that have shown that Opdivo can work in conjunction with Remicade.  And to answer your question, I have a real smorgasbord of autoimmune issues.  The biggest is ankylosing spondylitis, but also UC and psoriasis.  But both the UC and psoriasis are pretty tame.  The AS is a motherfucker if I stop taking Remicade.  My whole spine from neck to butt just starts locking up.  Had to pause after surgery, and it was brutal.  But back on it.  And we've decided that if complications arise, the Opdivo will have to go, as the Remicade is an absolute necessity for quality of life.  Man my shit's all fucked up when I type this out.  My wife oughta just Old Yeller my ass if she knows what's good for her.

Edited by Sbbruin
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1 hour ago, Sbbruin said:

Thanks for the insight.  There have been studies that have shown that Opdivo can work in conjunction with Remicade.  And to answer your question, I have a real smorgasbord of autoimmune issues.  The biggest is ankylosing spondylitis, but also UC and psoriasis.  But both the UC and psoriasis are pretty tame.  The AS is a motherfucker if I stop taking Remicade.  My whole spine from neck to butt just starts locking up.  Had to pause after surgery, and it was brutal.  But back on it.  And we've decided that if complications arise, the Opdivo will have to go, as the Remicade is an absolute necessity for quality of life.  Man my shit's all fucked up when I type this out.  My wife oughta just Old Yeller my ass if she knows what's good for her.

If chemo/biologics become a necessity, stem cell therapy may be a possibility. This could improve your autoimmune issues - but it is a very complicated issue with both Opdivo (and stem cell therapy) and autoimmune diseases (and stem cell therapy). Anyway, the point is that there are options.

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14 hours ago, seven said:

That's great to hear RD. I'm two rounds of chemo down with #3 in a week. This shit sucks. 

Chemo sucks.  The nausea and shitty feeling for a few days after really blows, and not to bum you out but gets worse the more you have the treatment. But that (and radiation) works.  At least for me.  My tumor was reduced by almost 90% by the time they cut it out of me.  Which is good to if cancer returns that I should be able to knock it back with more chemo and radiation.

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11 minutes ago, Sbbruin said:

Chemo sucks.  The nausea and shitty feeling for a few days after really blows, and not to bum you out but gets worse the more you have the treatment. But that (and radiation) works.  At least for me.  My tumor was reduced by almost 90% by the time they cut it out of me.  Which is good to if cancer returns that I should be able to knock it back with more chemo and radiation.

Kick its ass, dude.

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15 hours ago, Bevo said:

If chemo/biologics become a necessity, stem cell therapy may be a possibility. This could improve your autoimmune issues - but it is a very complicated issue with both Opdivo (and stem cell therapy) and autoimmune diseases (and stem cell therapy). Anyway, the point is that there are options.

How does this work, exactly?

1) If you have an autoimmune, you don't want to harvest your own stem cell via blood marrow because you are tainted, so you need to use someone else's stem cell or cord blood and 2) even if you have access, you have to find a clinical trial or something via a Cleveland Clinic or some NIH thing, right?

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2 minutes ago, HamsterHookah said:

How does this work, exactly?

1) If you have an autoimmune, you don't want to harvest your own stem cell via blood marrow because you are tainted, so you need to use someone else's stem cell or cord blood and 2) even if you have access, you have to find a clinical trial or something via a Cleveland Clinic or some NIH thing, right?

You could use your own (autologous). Stem cells are harvested, You are treated with high doses of chemo to kill the cancer. The high-dose treatment kills the cancer cells, but also kills the blood-producing cells in your bone marrow. Afterward, the collected stem cells are put back into your bloodstream, allowing the bone marrow to produce new blood cells. It is effective against Myeloma, Lymphoma, and Leukemia. Not so much for solid tumors such as Bruin's neoplasm with a caveat that Opdivo is more effective.

Better is to use a close relative's (allogenic) stem cells. The relative is given G-CSF and GM-CSF to stimulate stem cell production and the stem cells are then harvested. Then like with autologous transplants you are treated with high doses of chemo to kill the cancer and afterwards the close relative's stem cells are infused into your bloodstream. The relative's stem cells will take over production of new blood cells.

You can expect some amount of what is termed graft vs. host disease as the stem cells will to some extent attack your body as it recognizes it as foreign but since the stem cells are a close match, the amount of GVHD is limited. Opdivo will enhance GVHD but the process also makes Opdivo more effective. Also, since there was something in your immune system that allowed the cancer to progress, hopefully, that same "something" isn't in your new immune system so it may be more effective in attacking any remaining cancer cells. A side benefit in Bruin's case is that the inflammatory process in some of his autoimmune diseases may be diminished or even halted due to the new stem cell infusion.

 

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9 minutes ago, Bevo said:

You could use your own (autologous). Stem cells are harvested, You are treated with high doses of chemo to kill the cancer. The high-dose treatment kills the cancer cells, but also kills the blood-producing cells in your bone marrow. Afterward, the collected stem cells are put back into your bloodstream, allowing the bone marrow to produce new blood cells. It is effective against Myeloma, Lymphoma, and Leukemia. Not so much for solid tumors such as Bruin's neoplasm with a caveat that Opdivo is more effective.

Better is to use a close relative's (allogenic) stem cells. The relative is given G-CSF and GM-CSF to stimulate stem cell production and the stem cells are then harvested. Then like with autologous transplants you are treated with high doses of chemo to kill the cancer and afterwards the close relative's stem cells are infused into your bloodstream. The relative's stem cells will take over production of new blood cells.

You can expect some amount of what is termed graft vs. host disease as the stem cells will to some extent attack your body as it recognizes it as foreign but since the stem cells are a close match, the amount of GVHD is limited. Opdivo will enhance GVHD but the process also makes Opdivo more effective. Also, since there was something in your immune system that allowed the cancer to progress, hopefully, that same "something" isn't in your new immune system so it may be more effective in attacking any remaining cancer cells. A side benefit in Bruin's case is that the inflammatory process in some of his autoimmune diseases may be diminished or even halted due to the new stem cell infusion.

 

Thanks for this response. Super informative.

God bless you Bruin!

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27 minutes ago, Bevo said:

You could use your own (autologous). Stem cells are harvested, You are treated with high doses of chemo to kill the cancer. The high-dose treatment kills the cancer cells, but also kills the blood-producing cells in your bone marrow.

I got precariously dangerous anemia (hemoglobin count of 4.8) from a combo of chemo and bleeding out of my ass from intense hemorrhoids. Was hospitalized for 3 days in September from it.  And the anemia persisted for months because I just wasn't producing red blood cells as quickly as I needed.  Had a number of blood and iron transfusions to get the counts back up.  Still at about 10.2, but MUCH better.  But my blood producing cells are still crippled a bit.

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1 hour ago, Sbbruin said:

I got precariously dangerous anemia (hemoglobin count of 4.8) from a combo of chemo and bleeding out of my ass from intense hemorrhoids. Was hospitalized for 3 days in September from it.  And the anemia persisted for months because I just wasn't producing red blood cells as quickly as I needed.  Had a number of blood and iron transfusions to get the counts back up.  Still at about 10.2, but MUCH better.  But my blood producing cells are still crippled a bit.

Be cooler if you spelled it "anaemia," and also if you started hanging out with people strung out on absinthe.

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3 hours ago, Sbbruin said:

Chemo sucks.  The nausea and shitty feeling for a few days after really blows, and not to bum you out but gets worse the more you have the treatment. But that (and radiation) works.  At least for me.  My tumor was reduced by almost 90% by the time they cut it out of me.  Which is good to if cancer returns that I should be able to knock it back with more chemo and radiation.


you got this man 

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My younger sister has early stage (suspected) lung cancer. Our father (2-packs-a-day addict) died youngish (63) from lung cancer and she also was a smoker, so thankfully, at least, she's been on top of early detection. She moved from LA to Fort Collins about a year ago so I've been going to her various surgeon and pulmonologist appts.

University of Colorado Health (UCH) is the largest hospital and provider network in our region. Surgeon there wanted to get her into surgery right away and planned to cut out a portion of her lung and lymph nodes.

She then got a 2nd opinion from a doctor with Boulder Community Health, the last remaining independent, doctor owned network in our region. His recommendation was step 1, try a biopsy, hope for results; step 2 a few weeks later, catscan-guided bronchoscopy to get a sample if necessary and also to mark it for future surgery if necessary and to visually see if lymph nodes effected, then wait a few weeks before...; step 3, surgery to cut out anything they thought necessary.

Then she discovered MD Anderson has a partnership with Banner Health in Greeley, CO where they have robotic bronchoscopy. We met with them yesterday. Greeley is a dump, maybe slightly above being the College Station of Colorado. But they have the latest and greatest technology for treating lung cancer, it's minimally invasive and offers all-in-one convenience - they can get a culture, view the lungs and lymph nodes with the tiniest of cameras and tubes, mark the areas of concern, test the tissue samples while you're on the table, and then remove them, all within a few hours.

Hopefully if the insurance side of this bullshit works out she'll have it all done within 3 weeks.

 

 

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17 minutes ago, Chopper said:

My younger sister has early stage (suspected) lung cancer. Our father (2-packs-a-day addict) died youngish (63) from lung cancer and she also was a smoker, so thankfully, at least, she's been on top of early detection. She moved from LA to Fort Collins about a year ago so I've been going to her various surgeon and pulmonologist appts.

University of Colorado Health (UCH) is the largest hospital and provider network in our region. Surgeon there wanted to get her into surgery right away and planned to cut out a portion of her lung and lymph nodes.

She then got a 2nd opinion from a doctor with Boulder Community Health, the last remaining independent, doctor owned network in our region. His recommendation was step 1, try a biopsy, hope for results; step 2 a few weeks later, catscan-guided bronchoscopy to get a sample if necessary and also to mark it for future surgery if necessary and to visually see if lymph nodes effected, then wait a few weeks before...; step 3, surgery to cut out anything they thought necessary.

Then she discovered MD Anderson has a partnership with Banner Health in Greeley, CO where they have robotic bronchoscopy. We met with them yesterday. Greeley is a dump, maybe slightly above being the College Station of Colorado. But they have the latest and greatest technology for treating lung cancer, it's minimally invasive and offers all-in-one convenience - they can get a culture, view the lungs and lymph nodes with the tiniest of cameras and tubes, mark the areas of concern, test the tissue samples while you're on the table, and then remove them, all within a few hours.

Hopefully if the insurance side of this bullshit works out she'll have it all done within 3 weeks.

 

 

Fingers crossed bud.

 

I fucking hate this thread.

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2 hours ago, Sbbruin said:

^^my wife has been a champion throughout all of this.  When she repeated “in sickness and in health” she probably wasn’t paying that close of attention.  But here it is, and she stepped up to the moment.

This is such a great point. When I was young, playing the field, all I cared about was, is she good looking, and will she have sex with me. Checking out her content of character never crossed my mind...never. I was so totally ruled by the head of my dick that it makes me embarrassed today to even think about it. Seriously, I look back and I don't like that guy. I try to tell my son, don't pick one on looks. Think about "is this the woman that I trust to push my wheelchair". He seems to have listened, but who knows.

It sounds like  you hit the jack pot SB. Tell her some guy on the internet thinks she's great.

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3 hours ago, Not that Bob said:

This is such a great point. When I was young, playing the field, all I cared about was, is she good looking, and will she have sex with me. Checking out her content of character never crossed my mind...never. I was so totally ruled by the head of my dick that it makes me embarrassed today to even think about it. Seriously, I look back and I don't like that guy. I try to tell my son, don't pick one on looks. Think about "is this the woman that I trust to push my wheelchair". He seems to have listened, but who knows.

It sounds like  you hit the jack pot SB. Tell her some guy on the internet thinks she's great.

Watching her spend an hour and a half trying to clear my feeding tube (on numerous occasions) or mixing my medicine cocktail 2-3 times a day gave me a renewed appreciation for someone I’ve certainly taken for granted over the years.  

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On 2/5/2023 at 3:05 PM, Stringer said:

We’re planning a Thank You dinner for my friends next month for everyone who helped us over the last 6 months. When I think about what I’m going to say about my wife, I tear up every time. She has been unbelievable. She is a successful real estate lawyer, is on the board of the Thinkery children’s museum, we have a 3 and 6 year old at home, we are working on a home addition and she takes care of my leukemia riddled ass. I got the best one there is.

Going down to Houston for round 6 of 6 next week. From there, we just keep our fingers crossed that it doesn’t come back. If it does, we go to marrow transplant. I really hope we don’t have to do that as it can be pretty dangerous. At the very least, I should be “normal” for a time even if it does come back. The 2 year mark is the big one and then 5 year mark. After that, the chances of relapse are low.

Good luck to all of you guys. I am very happy that we’re going through this now and not decades ago. The advances are crazy and I hope they keep coming. My doctor said they are hoping for a pill to take care of leukemia orally in the next 10-15 years. Insane stuff.

Blessings brother.   This is the best and worst of threads.  But helps me.  know you aren’t alone.  Wishing you much good health.

Edited by Sbbruin
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Fuck Mondays and motherfuck cancer.  My mom went through chemo for colon cancer when I was in HS (caught it early, been in remission for over a decade now) but it still scares the shit out of me just thinking about it. She’s a tough lady but I have very vivid memories of her being just exhausted and wrung out from her treatments. 

thank you all for sharing. I hate/love this thread. 🤘

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My MIL's cousin called her the other day. Told her he's got 3-6 months to live, he's in his early-mid 70s. He's got melanoma and can't do any chemo/radiation due to his heart condition. He and his wife have an adult son (40s) with special needs. They're trying to find him a home, as his mother will not be able to care for him on her own. My MIL is pretty torn up about it. Only met him a few times, seemed like a nice guy. 

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Chopper and all of you helping someone with this terror, I will try to repeat a post from TOS
If you are helping remember to do the smallest things. Bring writing materials to all appointments. Take copious notes. If you don't understand or are  not totally clear, ask the doctor, nurse, respiratory therapist, whoever to repeat their instructions until you are clear and have it written down. Write. It. Down! Repeat the instructions back to the doctor so they can verify that you heard correctly. Remember that when the doctor, etc. is talking the only thing in the patient's mind is "Fuck! I've got cancer! Fuck! I've got cancer! Fuck! I've got cancer!" The patient can not hear "Okay, follow up visit at St. Lukes room 412 on February 15." They can't hear it, much less act on the order. Bring a pocket full of cash to take care of parking. Call ahead and get directons to the offices you will need to go to. If you have the time make a dry run so the office/hospital will be familiar to you. Keep a calendar of all this for the patient. They won't be able to do it. They have other things on their mind. Anticipate ahead of time, especially if  you are going to an out of town faciliity. Look for restaurants you can go to on the way there and back. Within reason make the decisions about where to eat or stay. "Tell" them, rather than asking, "We're going to pull in here for a bite to eat". If you ask what they want to eat, they are liable to say "Fuck! I've got cancer!!" Take that burden for them. As much as possible, make appointments for follow ups as...much as possible. Call the house cleaner. Pick up the laundry. Bring groceries. Don't ask if they want you to pick up groceries, just do it, at least for a little while, until they can think, "Milk and Bread" and not just "Fuck! I've got cancer!" If you need help, recruit it. Find someone you know you can trust to do the things listed above. At first this helper may not be the patient's spouse, cause the spouse is also thinking "Fuck! My husband has cancer!" You may "only" be giving someone a ride, but it is one of the most meaningful things you can do. YMMV

This is great advice. And the other comments regarding regarding the importance of selecting the right marriage partner are spot on.

While a spouse’s care is the most important it is so important that other family and friends chip in as much as possible to give relief.
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7 minutes ago, Anton Chigurh said:

Well, I guess I am in this club now, bitches.

I am now a lymphomie with NSCHL. Luckily, it is a pretty curable thing, even in later stages.

I’m still unstaged until my PET scan on the 27th, but already have my port installed and ready to go. Had two inconclusive core biopsies from a cervical neck node, and then an excisional biopsy removed two nodes in my subclavicular area (where I first noticed a swollen node) and confirmed it.

Anyone else ever gone through this or any other subtype of Hodgkin’s (or even NHL)? Tips? Tricks? I think that I will likely receive the ABVD regimen, as it is the most common for CHL patients in the US, but I’ll find out soon enough.

Just looking forward to getting this shit behind me.

KIck its ass, @Anton Chigurh.

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