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jack14

CT scan results

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Well, I saw my Onc today and got the results of yesterdays CT scan. She had told me last week that she was not very optimistic that the Keytruda was working for me. She based that on the one lymph node that she can palpate which didn't feel as though it had shrank any, but had maybe even grown some.

She added that we would probably be switching to chemo therapy a day or so after the scan.

I had my first taste of "scanziety" and I sure didn't like it.

So, I get my blood drawn for my tri-weekly labs and vitals taken. And she walks in the room and, we are both wearing masks so I can't see her expression. Her eyes seemed to shine though and I was hopeful.

She sits down in front of me and says, "I have some good news", and tells me that the scan showed moderate but definite tumor regression in the primary lung nodule and in the two lymph nodes. So, we will continue with the Keytruda regimen.

whew.....thank you God. Please project this blesswing to my cancer brothers and sisters as well.

amen

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Great  news Jack. Any progress is good progress. Looking forward to even better results on your next scan so keep faith. Best of luck!

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Thank you everyone!  I wonder if anyone is doing any studies (subjective based) to try and determine why some people respond to Keytruda while others don't? For instance, I had a 20% PDL expression and some who have had more didn't respond to treatment, and others as low as one percent have. Anyway, I havn't been asked anything by any of my providers in regards to things that I may or may not be doing that could explain it.... just wondering. Diet, exercise, sleep quality, stress levels, etc. could be a factor.

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Imagine if someone was to discover that it was the folks who had been drinking chlorinated municipal water that failed to respond to immunotherapy. Or, who took medications for GERD, or maybe it's the mouthwash, toothpaste? How many lives would have been saved...pain and suffering alleviated.

Here is an interesting article I found that might relate this to gut bacteria. https://www.cancerresearch.org/blog/june-2020/microbiome-cancer-on-a-chip-hyun-jung-kim?utm_source=luminate&utm_medium=email&utm_campaign=cancerimmunews&utm_content=aug2020

And there is also a chance that there may be more than one thing that effects ones response to immunotherapy.....

 

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Hi Jack

Just catching up today.  Congrats on getting through scan #1.  No one likes scanxiety it totally sucks.   So glad it was good news.  I wish we knew more about why some people respond to treatment while others don’t.   Carry on!   We’re rooting for you! 
Michelle

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On 8/1/2020 at 2:49 PM, jack14 said:

Thank you everyone!  I wonder if anyone is doing any studies (subjective based) to try and determine why some people respond to Keytruda while others don't? For instance, I had a 20% PDL expression and some who have had more didn't respond to treatment, and others as low as one percent have. Anyway, I havn't been asked anything by any of my providers in regards to things that I may or may not be doing that could explain it.... just wondering. Diet, exercise, sleep quality, stress levels, etc. could be a factor.

Very good question but the answer is simple but not simplistic. First one needs to know how the human body functions.

Scientists have come a long way in estimating the number of cells in the average human body. Most recent estimates put the number of cells at around 30 trillion. Written out, that’s 30,000,000,000,000! These cells all work in harmony to carry out all the basic functions necessary for humans to survive. But it’s not just human cells inside your body. Scientists estimate that the number of bacterial cells in the human body likely exceeds the number of human cells. https://www.healthline.com/health/number-of-cells-in-body#:~:text=Humans are complex organisms made,Written out%2C that's 30%2C000%2C000%2C000%2C000!

Also imagine the cells do not function exactly the same way from one human to another. For instance I read an article lately that claims that the percent of PD-L1  in cancer patient does not determine the success or failure of Keytruda  but it is rather the manner in which PD-L1 interacts with PD1 and other cells.  There is more success currently fighting lung cancer because there are many solutions and oncologists  rely on other oncologists experience to choose the right regimen.

Profits and money in the pharma industry made it impossible in the past the share any information about new drugs, research or clinical trials. So there was no way the know for instance how Kytruda  given at the same time as chemo will benefit the patient.  Also clinical trials beside being kept  secret were very stringent so that a patient with lung cancer and COPD or any other condition will not qualify the enter the trial. Pharma wanted the perfect candidates.

8 years ago the Federal Government began a program demanding that all clinical trials be logged in the same data base and that all the results were shared among pharma, researchers and oncologists. Also the law states that every cancer patient treated for cancer also be part of a single data base. 

Modern computers are able to process as many instructions in one day as they use to. That enables researchers to compare results among cancer patients and equate them to their cells interactions. While the technology is just starting, it is estimated that few years from now oncologists will be able to pinpoint exactly what regimen fits each cancer patient. This is not only true for cancer but any other ailment. If you heard of personalized medicine  it was born from this concept.

As for what we consume daily there is no doubt personalized medicine will reveal  many surprises. This is a very brief description of what I learned from the internet after I become a cancer patient. I hope it helps.

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Thank you Michelle! I am rooting for all of you too.

And thanks Gary. Those are some truly interesting facts. I had heard about the sharing and integration of information and believe that will help us to see an end the death and suffering. I only hope that we see a breakthrough in regards to perfecting that "personailzed medicine" much sooner than later.

 

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On 8/2/2020 at 3:24 PM, jack14 said:

 

 I have taken Probiotics for years (long before cancer) and continued to take them while I was on Immunotherapy.   When I first started it, it had just been FDA approved, so the question of probiotics was never discussed, nor was I ever instructed to follow any special type of diet.   

 I had AN excellent response to Immunotherapy (Opdivo), but have NO idea whether or not the probiotics played ANY role in it.   I do know that some patients started to add probiotics while on immunotherapy and if I remember right there were later studies that found it had no effect and might actually make the treatment less effective??  I would guess at this time, we are still learning and will continue to learn, as these drugs are still relatively new and have only been been FDA approved for a little over 5 years now.  Much has changed since I first started on Nivo and we've continue to learn more and more about new side effects and how to best treat them.   

I personally, do not feel that there is any "specific diet" that is needed to do well in a cancer journey.   Nonetheless I think it's always wise to try and follow a healthy diet and avoid processed foods and high amounts of white sugar and unhealthy fats.    I ate and still eat foods that I like and foods that taste good.  Pretty much anything, but in moderation.   I know many people may disagree, but in my case this had worked well and I'm not going to change now.   As the old saying goes "If it's not broke, dont' fix it"....

My tastes changed significantly since cancer and I have a lot of fatigue and random bouts of nausea (despite now being stable).   The fatigue never ends and makes it so that I'm much to tired to spend a long time in meal preparation, especially dinner, because my fatigue really hits by late afternoon and I'm just too wiped out to then spend hours making dinner.  My hubby thankfully is also self sufficient and we tend now to eat our "bigger" meal at lunch (versus dinner) and often have a late lunch and small dinner.     I also no longer like many foods and eat pretty "bland".   I drink a LOT of water and keep well hydrated.   I eat when I'm hungry and sometimes have to kind of force myself to eat, if I am having one of those days with nausea.  e have not been able to find 'any' medical reason for the nausea and all my abd scans are clear, so that is happy news.      I am very lucky that I'm not on a treatment that requires me to take it with food because I do not eat 3 meals daily, mostly one main meal with snacks and such, when I feel hungry.  I do not have a good appetite and haven't for a long time now.   But ther are days when I'm very hungry, but I find once I start eating, I also get full quite easily?     

I have no idea why my tastes have changed to much or why they never went back to normal after I stopped treatment (Now almost four years).   I used to love my morning coffe, but now can't stand the taste or smell and haven't had any in over  five years.  I also do not like any kind of spicy foods or lots of sauces.  I hate the smell or garlic and don't even like the smallest amount of "ground pepper" on ur used to prepare food and if it's been used I taste it immediatley and can't find whatever it's in.    When we do get food delivered or eat out, I'm always ask the cooks to avoid any ground pepper.  The only seasoning I use is lemon or sea salt a few types of salad dressing.      I do love fresh seafood and living on the Mass Coast, I'm lucky that we can find it here fresh off the boat.  I'm do not care for most processed foods and rarely eat them.  

I guess it just goes to show that NOT all studies fit all patients and like much in our lives, we are one "treament" fits ALL!   I know some people will say I have a lousy diet, because it's so limited, but I do also take daily multi vitamins and supplements to try and make sure I'm not missing anything vital.    I wish I did like more foods, but cant' seem to change it at this piont. I've never been a very adventurous eater and prefer to stick with what I do like and know tastes good.

Just curious IF others have found the need to totally stop eating certain foods after they were diagnosed or after taking a certain treatment.   

 

 

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