Tales From the Edge

[tom67inMA]

My latest blog post, not sure if it's inspiring or just depressing. Either way, in December I honestly thought my number might be up shortly. Now it's one day at a time, as a change in chemo appears to be producing results.

tominmotion.blogspot.com/20...

[Fanger1]

Glad the new treatment is tolerated and hope your numbers keep improving and the upcoming scans show improvement🙏

[LearnAll]

Tom The Fighter...Your blog is so insightful and meaningful for all who suffer from cancer.It is of course, a conundrum...to live life or to spend life reading and researching about treatments.

From your description, it is more clear to me that it is very important to keep our general health good so we can tolerate strong but toxic treatment, when we have to go for them.

Oh...about falling and low platelets...I know a surefire way to bump them up....Boiling papaya leaves and after straining drinking the extract...Does increase Platelet count within days.

You have been a runner and an athlete and I think that's why you are able to handle these exotic and toxic type chemotherapies.

Wishing you a pain free, active life and please keep writing the blogs..it helps so many people to read these deep and articulate descriptions of war with cancer. Best of Luck...

[hansjd in reply to LearnAll]

Such a good response to Tom. We are all wishing the very best for him.

[tom67inMA in reply to LearnAll]

Thank you for the kind words! I didn't have any papaya leaves and my platelets have gone from 64 to nearly 200, which is above my usual normal of around 140. I was shocked, they doubled in the first week after changing treatments.

I also "begged" for EPO for the anemia, but they wanted to see me drop below 9.0 before considering it. They did give me an iron infusion, and my hemoglobin went from 9.1 to 11.1 in three weeks. They could have given me a sugar pill and called it EPO and I'd believe it with those results.

I can only take partial credit for exercising and being generally healthy. Being in my early 50s is certainly a factor as well. And to beat j-o-h-n to a punchline, I try to trick my marrow by acting like I'm only 5 as much as possible.

[j-o-h-n in reply to tom67inMA]

Why don't you try to trick your marrow by acting like you're only 5 as much as possible?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/14/2021 6:28 PM EST

[Hidden in reply to j-o-h-n]

I peaked at 2. It's been downhill since

[j-o-h-n in reply to Hidden]

age or inches?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/14/2021 6:51 PM EST

[Hidden in reply to j-o-h-n]

Besides you, what 2 year old has a 2 inch penis?

[j-o-h-n in reply to Hidden]

my ex wife.............

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/14/2021 7:01 PM EST

[Hidden in reply to j-o-h-n]

Then that begs this question...who drove in bed?

[j-o-h-n in reply to Hidden]

The babysitter........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/15/2021 1:48 PM EST

[Muffin2019 in reply to LearnAll]

My mom had gotten papaya capsules to take but would not take them after I got them for her, it us supposed to work, if I was in that position I would have taken them.

[Mascouche]

Sorry to read about your ordeals. I wish you to have a smoother road ahead of you. Since you are foreseeing going through more chemo, I would suggest that you read up on fasting before chemo as it is supposed to really help in all the ways (chemo more efficient, fewer side-effects) if fasting 3 days before and 24 hours after chemo. But of course, that is only if you have a normal or high BMI. If you are below a healthy BMI, you should refrain from fasting as you will be too weak.

[tom67inMA in reply to Mascouche]

I tried limited fasting on the cabazitaxel but the whole experience was such a disaster I don't know if it worked. I may try it again in another cycle or two, hoping it helps limit damage to the digestive system. I'm at what I think is a good weight for me, low 150s for 5'10". Can't fast for 3 days prior as I'm usually trying to regain weight lost earlier in the cycle, but I can certainly restrict calories and protein (lack of protein seems to provide the bulk of benefits based on some things I've read) for 24+ hours before the infusion.

[Muffin2019 in reply to Mascouche]

I never had an issue with chemo, never fasted, stuck to a high protein diet, the only side effect other than hair loss on the body but not the head was dry nails. I know we are all different so good luck and just try different stuff, they gave me anti nausea pills but never had to take them. Taste buds were off but had to follow the suggested diet, I think that along with exercise really got me through it and tons of water.

[tom67inMA in reply to Muffin2019]

I definitely should drink more water/ fluids. I had been taking the nausea pills daily and was losing my desire to eat, but that seems to be improving now, and I hope that means the liver mets are shrinking. My interest in fasting is specifically because of the digestive issues, and at the very least if I'm not asking my digestive system to run at full capacity then it might not suffer as much damage. Problem is folfiri includes 5-FU which is a 46 hour infusion with a take home pump, given every 2 weeks. If I were to follow the guidance of 3 days before until one day after (which seems typical of recommendations I've seen elsewhere), that would be 6 days withou food out of 14, yikes!

[GoBucks]

Whatever that number you thought was up, I suggest you pick 6 of them and go play Mega Millions and Powerball. You are a lucky guy. Hope you write back and say how pissed you are because you had 5 numbers and only won a million dollars. Thanks for the blog Tom. Always rooting for you.

[tom67inMA in reply to GoBucks]

That number would be 26.2, the number of miles in the marathon I'm still planning to run.

[hansjd]

As always Tom we are thinking of you and hoping for improvements.

[Hidden]

Keep thinking positive, my number was supposed to be up nearly five years ago.

[Brackenridge]

Your blog is so insightful on so many levels - thank you so much for sharing not only your medical journey but also your emotional journey. I’m rooting for you and you are in my heart.

[Yank66]

Your blog post was not only thought provoking, but also inspiring. Keep on keeping on!

[onajourney]

Thank you for sharing your story. I have your blog tagged on my web browser and have been worried for you since your last post, due no new updates.

Blessings to you and prayers for lots of GOOD DAYS!

[MarkBC]

I also like reading your blog. Best of luck as you continue on your journey.

[ctflatlander]

Tom, You are an inspiration. Not sure I could ever tolerate your treatments. Take that ride to Vermont with your Mustang and that will take your mind off things. (That's if you drive it in the snow and salt)

[tom67inMA in reply to ctflatlander]

The Mustang does get out occasionally in the winter, when the roads are dry. It's 22 years old and the lack of rust is stunning. Believe it or not, it still has the original brakes and the rotors are only lightly rusted. My other cars the brake discs are shedding flakes of rust in just a few years, and the pads/calipers rust and seize if you don't take them apart and clean them up every few years. But I digress.

I took the Mustang for a drive to Barre Falls Dam last Saturday. Rural Massachusetts, 2 lane country roads, very nice drive. It was enjoyable enough to get my mind off cancer and covid and whatever you want to call the disaster happening in DC.

I haven't had the endurance to confidently drive it all the way to Vermont in some time, and my wife can't drive a stick shift. Hopefully it will get there this spring after mud season.

[j-o-h-n]

Tom I am so disappointed in you. "my wife can't drive a stick shift". And you're in IT? Just let her sit on your lap when driving..... you shift gears/clutch and she steers............And you can also play with the pink plastic dice hanging from your rear view mirror. Geezamacripe....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/14/2021 6:59 PM EST