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bishop5150 said:
Thanks for your well wishes and especially your insight. Had all my biopsies, testing, diagnosis and treatment done at MD Anderson medical center. It spread to the N2 lymphnodes next to the tumor if I’m saying that right.

Because of the location of the tumor the team decided against surgery and are confident they can get it all with Radiation and chemo.

It is a large cell neuroendocrine carcinoma. Kind of rare from my understanding but becoming somewhat more common. MD Anderson has a GI Dr there, Dr Halperin, that is a leader in research on this specific cancer. Hopefully he was a member of the tumor board and had input regarding my treatment. I’m going to ask my Dr about that.

I’m getting Chemo (2 kinds: Carboplatin and Paclitaxel) every Monday and Radiation treatment Mon - Fri for 6 weeks. Then I believe another 6 week round of treatment with chemo every 3 weeks. Then looks like immunotherapy for about a year.

Any thoughts or questions you think I should ask are very welcomed.
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Large cell neuroendocrine tumours tend to be sensitive to chemo and radiotherapy. The plan they've mapped out for you sounds spot on.

The only question I'd ask may be: if they succeed in turning all the N2 nodes PET-scan negative, but if there is some residual viable activity in the primary tumour, would they then consider surgery to remove the residual tumour?

I presume from your description that the tumour may be near the "root" of the lung, called the hilum. Those can be a bit trickier to remove - usually have to take a lobe of the lung with the tumour in it - but I've done hundreds of those, some by traditional open surgery, but most over the last 20 years have been done thoracoscopically (keyhole surgery).

The other option would be to keep going with the chemoradiotherapy and then immunotherapy while monitoring the tumour itself with PET scans etc.

But depending on your age, co-morbidities, etc, sometimes it's quicker and more definitive to remove the primary tumour once all the spread has been suppressed and controlled. It's just another option - may be worth asking. All plans can be modified and tweaked as time goes by.

If there's anything else you want to know (as long as I know it ;) ) feel free either to send me a PM, or carry on here on the thread in case it might help someone else. Hang in there :)
 
Doc Rock said:
Large cell neuroendocrine tumours tend to be sensitive to chemo and radiotherapy. The plan they've mapped out for you sounds spot on.

The only question I'd ask may be: if they succeed in turning all the N2 nodes PET-scan negative, but if there is some residual viable activity in the primary tumour, would they then consider surgery to remove the residual tumour?

I presume from your description that the tumour may be near the "root" of the lung, called the hilum. Those can be a bit trickier to remove - usually have to take a lobe of the lung with the tumour in it - but I've done hundreds of those, some by traditional open surgery, but most over the last 20 years have been done thoracoscopically (keyhole surgery).

The other option would be to keep going with the chemoradiotherapy and then immunotherapy while monitoring the tumour itself with PET scans etc.

But depending on your age, co-morbidities, etc, sometimes it's quicker and more definitive to remove the primary tumour once all the spread has been suppressed and controlled. It's just another option - may be worth asking. All plans can be modified and tweaked as time goes by.

If there's anything else you want to know (as long as I know it ;) ) feel free either to send me a PM, or carry on here on the thread in case it might help someone else. Hang in there :)
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Thanks for your insight. Definitely appreciated. I will ask about the after treatment surgery you mentioned.

Little about me I'm 49 (50 in February), 6' 3" 220lbs. in decent shape and try to stay a little active. Mainly eat a high amount of proteins and vegetables with low carb/low sugar diet. Drink tons of water and indulge some sugar free sodas now and then. Enjoy a couple glasses of wine or beers few times a week. Blood work is good. No other health issues besides blood pressure and cholesterol might be getting a touch to high. But I am an ex smoker. Smoked 1-2 packs a day for 25 years. Quit cigs back in 2013 but picked up the e-cigs and quit those about 5 months ago. But luckily all the pulmonary testing they did came back normal.

The tumor is 2" x 1" I initially had a surgeon assigned to my team but once they did all the scans and tests they decided against it I guess because of the size and location of the tumor. Their plan is a curative treatment and seem confident they can accomplish it with radiation treatments mainly doing the heavy lifting and the chemo to make the tumor more susceptible to the radiation along with addressing any microscopic disease in my body.

I had my 2nd round of chemo yesterday and so far so good. All my labs still look good. My body seems to be doing ok with it. No allergic reactions and I haven't felt sick.
 
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bishop5150 said:
Thanks for your insight. Definitely appreciated. I will ask about the after treatment surgery you mentioned.

Little about me I'm 49 (50 in February), 6' 3" 220lbs. in decent shape and try to stay a little active. Mainly eat a high amount of proteins and vegetables with low carb/low sugar diet. Drink tons of water and indulge some sugar free sodas now and then. Enjoy a couple glasses of wine or beers few times a week. Blood work is good. No other health issues besides blood pressure and cholesterol might be getting a touch to high. But I am an ex smoker. Smoked 1-2 packs a day for 25 years. Quit cigs back in 2013 but picked up the e-cigs and quit those about 5 months ago. But luckily all the pulmonary testing they did came back normal.

The tumor is 2" x 1" I initially had a surgeon assigned to my team but once they did all the scans and tests they decided against it I guess because of the size and location of the tumor. Their plan is a curative treatment and seem confident they can accomplish it with radiation treatments mainly doing the heavy lifting and the chemo to make the tumor more susceptible to the radiation along with addressing any microscopic disease in my body.

I had my 2nd round of chemo yesterday and so far so good. All my labs still look good. My body seems to be doing ok with it. No allergic reactions and I haven't felt sick.
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All good info, and no nasty surprises in there :) The ex-smoking thing, and the vaping, can't be undone, so absolutely no point in beating yourself up about them. But if the lung function is still good, as you suggest it is, you would tolerate losing a lobe of one lung, for example, and probably not even notice the difference in terms of function - you'd still have 1.5 lungs.

I have many patients running around with only one lung, and a few with only half of one lung. They're not going to run the marathon any time soon, but in terms of normal life, they're fine. So losing just one lobe wouldn't affect you in terms of normal life. FYI - the Pope only has one lung, by the way! ;)

The option of surgical removal is just one option, and as I said, may be at least just worth asking about once they see what sort of progress the chemoradiation makes. Obviously I haven't seen your scans etc, so I'm talking hypothetically. But large cell neuroendocrine tumours, as mentioned, can be quite sensitive to the chemoradiation combination, so just crack on with those and see what happens :)
 
I'm hanging in there guys. Thanks for asking. I'm on week 5 of chemo/radiation treatment. 10 more days of radiation to go. Been good days and a lot of bad days. I'm just very tired and fatigued. But I can see the light at the end of the tunnel.

I haven't gotten sick from the chemo and I still have my hair so I can't really complain.
 
bishop5150 said:
I'm hanging in there guys. Thanks for asking. I'm on week 5 of chemo/radiation treatment. 10 more days of radiation to go. Been good days and a lot of bad days. I'm just very tired and fatigued. But I can see the light at the end of the tunnel.

I haven't gotten sick from the chemo and I still have my hair so I can't really complain.
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Keep hanging, brother. Some crappy days pretty much go with the territory — no surprise for you, I'm sure.

Cool that the chemo didn't flatten you, and your hair stuck around!
 
bishop5150 said:
I'm hanging in there guys. Thanks for asking. I'm on week 5 of chemo/radiation treatment. 10 more days of radiation to go. Been good days and a lot of bad days. I'm just very tired and fatigued. But I can see the light at the end of the tunnel.

I haven't gotten sick from the chemo and I still have my hair so I can't really complain.
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Sending good thoughts, brother !
 
Glad to hear the good report, Todd. The fatigue is tough; it’s a long treatment. Keeping yourself in good shape prior has really paid off for you now. Hang in there, bud!
 
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