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I caught the cancer


Burt

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9 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.

Fuckin hell man.  Hang in there.

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9 minutes ago, Sbbruin said:

If I can offer one piece of advice, don’t look too far down the road.  I found trying to comprehend everything I was going to be facing was overwhelming.  It was much easier to just focus on “what’s the next thing?”  What’s the next appointment?  The next treatment session?  The next test?  Keep your horizon short.  Then one day it’ll be behind you.  I’m not there yet, but getting there.  
 

You got this.  One day at a time.

One day at a time is just a huge thing when you are facing something overwhelming.  It's really the only way to live.

Hang in there, friends.

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If I can offer one piece of advice, don’t look too far down the road.  I found trying to comprehend everything I was going to be facing was overwhelming.  It was much easier to just focus on “what’s the next thing?”  What’s the next appointment?  The next treatment session?  The next test?  Keep your horizon short.  Then one day it’ll be behind you.  I’m not there yet, but getting there.  
 
You got this.  One day at a time.

Thanks, buddy. I know that your journey has been pretty crazy, and I really appreciate your insight.
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16 hours 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.

You are probably right on ABVD. Dana-Farber has some pretty good info on treatments. https://www.dana-farber.org/hodgkin-lymphoma/treatment/ . ABVD is effective but is tough on the body, especially the Adriamycin. I'm a big fan of immunotherapies such as nivolumab as they are the future but they are usually reserved for recurrent cases at this point in time.

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21 hours 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.


wtf man ? 
 

1. You probably owe me a beer

2. You 100% got this. Don’t hesitate to Reach out if you need anything. You know how to get a hold of me 

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20 hours ago, Goofyboy said:

Any advice for mastectomy recovery? Wife is going in Monday. She’s 42 and it was her first mammogram.

The right one is going away. Her doc says we caught this really, really early, so all should be fine.

Anyway - any helpful recovery recommendations?

Do sappy romantic stuff. Dead serious. Once my wife had surgery when we first started dating, and I carried her bed downstairs so she wouldn't have to climb upstairs to sleep. In a moment of inspiration, I added the dust ruffle to it. The fact that I thought to put the dust ruffle on it melted her heart and has gotten me out of all kinds of shit since.

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Any advice for mastectomy recovery? Wife is going in Monday. She’s 42 and it was her first mammogram.

The right one is going away. Her doc says we caught this really, really early, so all should be fine.

Anyway - any helpful recovery recommendations?


I'll chime in.  First, sorry you guys have to go through this.

Assuming she's going to do reconstruction, if she can delay reconstruction post mastectomy, do it.  It will reduce the risk of infection by 12% (or so we were told) versus immediate reconstruction, which doesn't sound like a lot, but if chemo has knocked her immune system down, it makes a big difference.  Not to scare you, but this is the drill if she gets an infection post reconstruction.  Assuming she were to go the implant route, you can't fight an infection with the spacers they use to make room for the implants later because they are a foreign body without a blood supply.  So if she gets an infection, the spacers have to come out so they can treat the infection.  Then, they go back in.  It really prolongs things and requires additional surgeries.
Either way, they will tell you to keep the surgical drains clean, but what they should tell you is to keep a sterile fucking field around those things.  And get those damned things out as soon as possible (some studies in Britain have connected leaving them in longer with infections and it seems pretty logical).  Based on my experience, I'd start getting pushy after 7--10 days. 
 
Also, get a nice recliner for her to sleep in during early recovery at home.
 
Best to you guys.

Edited by dcbc
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23 hours ago, Goofyboy said:

Any advice for mastectomy recovery? Wife is going in Monday. She’s 42 and it was her first mammogram.

The right one is going away. Her doc says we caught this really, really early, so all should be fine.

Anyway - any helpful recovery recommendations?


did she consider double mas ?

 

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I hate it when we have new members in the club.   Everyone has a different way of coping, and everyone is right. I tried to learn as much as I could, and spent hours on PubMed looking up studies and all kinds of things.    That is exactly the wrong thing to do for other people, who will find more assurance and peace following their physicians recommendations without going down the rabbit holes.  

Mostly, ignore all of the stupid survival statistics for whatever time frame.  All of the stats involve older treatments with different drugs and different knowledge.  We are living in a fantastic age, with incredible medical advances happening at an ever increasing pace.  

You all got this.  At some point in the future we will all get together at some future Surly tailgate and drink a toast to fuck cancer.

Edit: I would go to Shirley’s tailgate too

Edited by Gatorubet
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On 2/17/2023 at 7:42 PM, Goofyboy said:

Any advice for mastectomy recovery? Wife is going in Monday. She’s 42 and it was her first mammogram.

The right one is going away. Her doc says we caught this really, really early, so all should be fine.

Anyway - any helpful recovery recommendations?

It sucks to read this kind of stuff. It’s weird thinking with several posters that I’ve “known you from the internet” for a long ass time at this point. Everyone is starting to get to the point where age and the issues around it catch up. We’ll be sending positive thoughts your way and the way of everyone else here going through their own issues.

Wife went in for some routine chest X-rays recently and has a mass in her lung. Doctor does not think it is cancer after preliminary testing, but it does appear to have grown rapidly which has him uncertain. Go in for pet scan soon to find out for sure and then she’s looking at least at a partial lung removal of the bottom half of her lung due to the size of it assuming it’s not cancer. Weird to be sitting at 43 having these conversations with your teenage kids, but that’s life I guess. 

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1 hour ago, conVINCEd said:

I know someone who was given 6 months to live at 31.  They celebrated their 10 year cancer free anniversary last year.  Modern science kicks all kinds of ass.

The main thing is to not Google any damn thing. Google don't know shit. I'm already dead according to Google.

Which is kind of cool, in a way. Zombie Surly poster. But that ain't me yet.

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2 minutes ago, RDCanecutter said:

The main thing is to not Google any damn thing. Google don't know shit. I'm already dead according to Google.

Which is kind of cool, in a way. Zombie Surly poster. But that ain't me yet.

Oh god this.  My prospects were NOT good according to the google machine.  I went to a damned dark place.  Until actual tests and diagnosis showed there was a clear path out of it should a few things break right.  And having one of the best in the biz leading my treatment sure helped.

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22 minutes ago, RDCanecutter said:

The main thing is to not Google any damn thing. Google don't know shit. I'm already dead according to Google.

Which is kind of cool, in a way. Zombie Surly poster. But that ain't me yet.

Damn right.  

Now, I’m probably dying October of 2024.  That’s because my 20 year term policy ends in September 2024.

I accept that, but I know it won’t be because of fucking cancer. 

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She is just getting the right one removed. Ole lefty is fine. No chemo or radiation - assuming it is not in the lymphnode. Reconstruction and a lift / reduction on the left later on.

We have a sleep number bed with the fully adjustable base. I’m setting up the PS4 in here so she can play Sims when she is up for it.

I know we all have to face some challenges some day, but damn.. she’s 42. Our son is 11. I know this is curable if caught early, but it doesn’t make it less terrifying.

Thanks for the advice. I really appreciate it.

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As you know, the staging is the deal.  And the ER, PR, HER2 stuff.  I’m hoping you have a recurrence score less than 16 and you put it in your rearview mirror for the rest of her life sans chemo.    Listen to your doctor, but if you have any concerns, it is always fine to seek a second opinion.  I ditched my local surgical oncologist and went to MD Anderson. Because I did, I was able to avoid a planed liver surgery.    

That is not to say you always have to go to a noted cancer research facility.  The more common cancers that present in the standard manner will almost always receive the same treatment no matter where you live. But if you or your wife have some little voice in the back of your heads telling you something is not right, or makes you uncomfortable, there is absolutely no shame or problem with second opinions.  

It sounds very promising for your wife and I’m sure none of that advice will be needed.

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8 hours ago, RDCanecutter said:

The main thing is to not Google any damn thing. Google don't know shit. I'm already dead according to Google.

Which is kind of cool, in a way. Zombie Surly poster. But that ain't me yet.

Routine spider bites and contact dermatitis are often times google diagnosed as  Ebola kissed Zika and produced a 2 weeks to live deadly untreatable mystery flesh eating bone cancer offspring. 

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She is just getting the right one removed. Ole lefty is fine. No chemo or radiation - assuming it is not in the lymphnode. Reconstruction and a lift / reduction on the left later on.

We have a sleep number bed with the fully adjustable base. I’m setting up the PS4 in here so she can play Sims when she is up for it.

I know we all have to face some challenges some day, but damn.. she’s 42. Our son is 11. I know this is curable if caught early, but it doesn’t make it less terrifying.

Thanks for the advice. I really appreciate it.

Sorry this number came up on the wheel for her but sounds like she should be fine. My mom had it in 94 and suffered the primitive treatment of those days but lived another 26 years without issue.

Get fluent in cancer and treatment so you can ask good questions and make better decisions. You can be her authoritative peer so she can focus on treatment and health.

Best wishes for her and you and the family.
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24 minutes ago, Texzilla58 said:

Great advice for any marriage really. No wife dreams of marrying a recliner that farts.

I don't know about that. We have a poster here who took out the queen with a ferten after a trip to Enchiladas y Mas and a long international flight. Some women find that quaint.

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Has the potential benefit from high-dosage vitamin c IV drips been mentioned in this thread already? My neighbor had an inoperable tumor last year, did the IV drips 2x per week, and after 6 months was cancer free. I've since heard other similar success stories. My sister is doing the High-dosage C IV-drips while she waits for her surgery (I am definitely not endorsing the IV drips in place of surgery or other medical treatment) and she says at a miniumum it helps her feel better and maintain calmness pre-surgery. Her surgery has been scheduled for the end of March.

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17 hours ago, Goofyboy said:

She is just getting the right one removed. Ole lefty is fine. No chemo or radiation - assuming it is not in the lymphnode. Reconstruction and a lift / reduction on the left later on.

We have a sleep number bed with the fully adjustable base. I’m setting up the PS4 in here so she can play Sims when she is up for it.

I know we all have to face some challenges some day, but damn.. she’s 42. Our son is 11. I know this is curable if caught early, but it doesn’t make it less terrifying.

Thanks for the advice. I really appreciate it.

Glad to hear she is able to avoid chemo and radiation.  My wife was diagnosed at 40.  All the advice above is good.  Take good care of her.  You guys will be on the other side of this before you know it.

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8 hours ago, Texzilla58 said:

 No wife dreams of marrying a recliner that farts.

upset-walking.gif

8 hours ago, Bevo said:

I don't know about that. We have a poster here who took out the queen with a ferten after a trip to Enchiladas y Mas and a long international flight. Some women find that quaint.

Oh, wait....yeah, I did that.

giphy.gif

 

In all seriousness, Troph's words are well-taken.  Take the time to be truly thoughtful, and focus on her without making EVERYTHING about her (because she'll also thirst for normalcy).

Oh, and if you see something, or something happens, that's really good, don't say "man, that's the tits!"  Just a helpful word of warning for you here.

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1 hour ago, Brisketexan said:

Oh, and if you see something, or something happens, that's really good, don't say "man, that's the tits!"  Just a helpful word of warning for you here.

Since she's keeping one of them, he could go singular?  But probably best for him to avoid it for a little while.

 

Also, @Goofyboy, I didn't mean to come in too heavy with my post last night.  That probably was a bit much to take in.  But you asked, and since my wife drew the unlucky straw on infections that dragged the reconstruction end out quite a bit, and I'd had a few beers, I laid it out there on the red flags, for better or worse.  In any event, if you have any questions, don't hesitate to reach out.  I've been where you are.

 

On the good side of things, we are coming up on 9 years from her diagnosis and she's still kicking ass. 

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On 2/17/2023 at 8:42 PM, Goofyboy said:

Any advice for mastectomy recovery? Wife is going in Monday. She’s 42 and it was her first mammogram.

The right one is going away. Her doc says we caught this really, really early, so all should be fine.

Anyway - any helpful recovery recommendations?

Even though we caught it early, the wife chose the double mastectomy, because of heredity. I earned the whole in sickness and in health portion of our vows, and learned that while it definitely helps, she's still who I wanted to spend my life with.  That was big for me because she was absolutely spectacular before, and wasn't into fake.   

Advice I'd give is be patient--always there in the present and try to make her laugh and feel good about everything. Share with her the bad stuff--like measuring drainage, applying medicine to her port areas, eating awful food, attending checkups, and while not bad, take her on regional trips.  For me it was a time to be supportive when it matters.  It won't ever be the same again but you can love her more.  Her last treatment is in April.    

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Kinda cool.  Was watching the Today Show this morning and they did a piece on breakthrough early lung cancer detection and work being performed by City of Hope.  It focused on work done by my doc, Dr. Jae Kim.  Dude is my fucking hero.

 

<iframe loading="lazy" width="560" height="315" src="https://www.today.com/today/embedded-video/mmvo164168773693" scrolling="no" frameborder="0" allowfullscreen></iframe>

 

link looks fucked up.  
 

https://www.today.com/today/embedded-video/mmvo164168773693

 

Edited by Sbbruin
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Hi all! Surgery went well. Right cancer titty is gone, along with 3 lymphnodes. Pathology comes back on that in a week or so.

She had the genetic testing done and has no markers, so she went with the single mastectomy.

Healing is going well. I appreciate the warning on the drain lines. We are hand washing, using gloves and alcohol wipes when stripping the lines and emptying the JP drains. I’d rather have all the scary info that we have a little control over than none.

Take care and thank you.

There you go Goof! Wives are generally tougher than men, as mine reminds me if I’m ever hurt. “They sliced me open, reached in and pulled out a 9 pound baby!” You two will beat this. The drains are usually the worst part…clean clean clean.
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Good to hear @seven.  Keep in mind that the chemo, and especially the radiation, will keep doing its thing for several months after you’ve completed treatments.  My tumor had shrunk about 50% 6 weeks following treatment.  By the time I had my esophagectomy 4 months following treatment, and they biopsied what they had removed, it had shrunk almost 90%.  The treatment sucks balls, but the shit works, at least in my case.

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Good to hear [mention=1077]seven[/mention].  Keep in mind that the chemo, and especially the radiation, will keep doing its thing for several months after you’ve completed treatments.  My tumor had shrunk about 50% 6 weeks following treatment.  By the time I had my esophagectomy 4 months following treatment, and they biopsied what they had removed, it had shrunk almost 90%.  The treatment sucks balls, but the shit works, at least in my case.

Yeah, I had pre-surgery chemo and my pre-surgery CT showed 85-90% reduction. I had a total mesorectal resection, which means they chopped out 90% of my rectum and some other gobledygook including 45 lymph nodes. Path report came back completely clean - I was cancer free and remaining treatment was cancelled.
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Bruin, I'm glad you're doing well after such a big surgery.  That's just kick ass. Well, don't want to sound like a dick or nothin', but, ah... it says on your chart that you're fucked up. Ah, you talk like a fag, and your shit's all retarded. What I'd do, is just like... like... you know, like, you know what I mean, like...

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On 3/2/2023 at 8:48 AM, Basil said:

Bruin, I'm glad you're doing well after such a big surgery.  That's just kick ass. Well, don't want to sound like a dick or nothin', but, ah... it says on your chart that you're fucked up. Ah, you talk like a fag, and your shit's all retarded. What I'd do, is just like... like... you know, like, you know what I mean, like...

Nice try, but he’s not selling the boat

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On 3/1/2023 at 9:14 PM, Basil said:


Yeah, I had pre-surgery chemo and my pre-surgery CT showed 85-90% reduction. I had a total mesorectal resection, which means they chopped out 90% of my rectum and some other gobledygook including 45 lymph nodes. Path report came back completely clean - I was cancer free and remaining treatment was cancelled.

Losing 90% of your recrum and that other stuff- what’s that mean, colostomy bag? 

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Losing 90% of your recrum and that other stuff- what’s that mean, colostomy bag? 

Could have, but not for me (although I did have a temp one for a couple of months between surgeries). My butt function is 95% of what it was before cancer. The biggest reason is I skipped radiation as part of a clinical trial called PROSPECT. Radiation fries your insides and can have life-long side effects. Second reason is that the tumor was high enough that they didn’t have to excise the lowest parts, where they surgically reconnect your plumbing. Without those lower parts, it’s a permanent bag.
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