Pain is very manageable now.

My duodenum opening is only about 15-20% size, so far less food more often (tiny 4 oz servings eaten every 30 minutes) is the winner.

‘Food’ consists of an all liquid diet. Cream soups, broth, runny oatmeal or cream of wheat, some juice, lots of water, and so on.

Chemo meds and steroids will keep me off almost all sugar, and a new twist is no cold drinks or food. I have to NOT touch cold, breathe cold, I’ll have a bad reaction.

Attitude and support of those around you helps immensely. It sounds like those are in order.

Keep fighting!

Glad the pain is being managed better. They really focused on pain control with my cancer and that has helped my attitude and ability to heal. I can emphasize with you on the food thing. My stomach is currently 4oz in size. I am limited to 4oz every 2 hours. It should enlarge to 2 cups over the next couple months. Remembering to eat every two hours is a pain. I cannot imagine having to eat every three minutes. Look to talk to a dietician the next time your see your onc. They can give a variety of suggestions.

Godspeed my friend, all your cyber-buddies are praying for a full recovery.

quote:

Originally posted by Censored:
Glad the pain is being managed better. They really focused on pain control with my cancer and that has helped my attitude and ability to heal. I can emphasize with you on the food thing. My stomach is currently 4oz in size. I am limited to 4oz every 2 hours. It should enlarge to 2 cups over the next couple months. Remembering to eat every two hours is a pain. I cannot imagine having to eat every three minutes. Look to talk to a dietician the next time your see your onc. They can give a variety of suggestions.

We spent about 30 minutes yesterday while I was in the chemo suite talking with the dietician. Got some good ideas although the menu remains sparse. Real food is probably still a month or 6 weeks away, and even then will be small portions well spaced out.

Had a long day recovering from chemo today. No rest, as I had to get another 2 units of blood. Home now since about 5:30, finally took a long nap and now watching “Dunkirk” for the second time. Hope to rest up all weekend.

I can feel some “chemo” activity in my affected areas already. It’s a weird sensation, not painful, just stuff happening. These tumors shrink fairly rapidly.

Rooting for you all the way, buddy!

Kick butt, Take names!
Don

Prayers sent, best of luck on your fight.

Had a little scare with vomiting and low hemoglobin on Sunday and Monday. Had to take an ambulance down to INDY and was concerned that the resection of the duodenum might need to happen. Jury’s still out. So far things have improved and I am now hoping to continue with the course of chemo I started last Thursday and possibly avoid surgery. Hope to be back in my own bed by Thursday.

Thanks for the update. You’re in my prayers.

Prayers Sent from a Lung Cancer Survivor 2009.

Had my port in for two years. Kept having to go get it flushed every 6 weeks. Asked the Doctor after about a year how long will the port stay in. He said forever. Well after another year he send referral to Thoracic Surgeon to have it removed. I guess when he said forever he meant terminal.

I get a dividend payment beginning of June. Will throw some in the hat then.

God Bless Ron

Roy

Up early today, antsy, can’t sleep. Had a good week with some meds settling down in my system and my gut behaving. No new bleeding internally. I’ve been eating normal food (low carb diet).

Had some additional good news on the insurance front (aspects of treatment and pet scan approved), and also got some financial relief/help from two of the chemo drug companies. I’ll take it!

I go in for round two (of 6, maybe 8) of chemo later this morning, and hopefully a few days of rest while the meds do their magic. I’ll get the neulasta shot this week also. Expensive as snot, and makes me feel like I have the flu for a few days, but a necessary evil.

I’d like to again thank everyone here who have both publicly and privately encouraged me via email, and especially those who have helped financially. We will do okay, as I’m using up all remaining vacation and sick days this year and hopefully won’t be into short term disability for more than a few weeks. We had someone local anonymously pay this months house payment, that was just incredible and took a huge load off our minds.

God bless you all.

Just posting the text I shared with fam and friends after the latest visit with my oncologist:

“Newest update: Lymphoma is very aggressive large B cell. Current chemo will knock it down, but it will return and I won’t survive without a bone marrow transplant up in Chicago. That will be after my chemo rounds are done in a few months. Still a “curable” cancer at this point, with the transplant.”

You got this. Stay strong brother.
God bless.

quote:

Originally posted by striker1:
Just posting the text I shared with fam and friends after the latest visit with my oncologist:

“Newest update: Lymphoma is very aggressive large B cell. Current chemo will knock it down, but it will return and I won’t survive without a bone marrow transplant up in Chicago. That will be after my chemo rounds are done in a few months. Still a “curable” cancer at this point, with the transplant.”

Good news indeed, and a reminder to those here to give blood and get on the Bone Marrow Donner list! It would be great if someone here, saved someone here. More prayers for a successful outcome. GWBD

quote:

Originally posted by striker1:
Just posting the text I shared with fam and friends after the latest visit with my oncologist:

“Newest update: Lymphoma is very aggressive large B cell. Current chemo will knock it down, but it will return and I won’t survive without a bone marrow transplant up in Chicago. That will be after my chemo rounds are done in a few months. Still a “curable” cancer at this point, with the transplant.”

Striker,

Ask you oncologist is any monoclonal antibody therapies will help with your type of lymphoma. There are some anti-B cell therapies available but only your oncologist will know if they are appropriate.

Best of luck and you have my prayers too,

Mike (Molecular Biologist/Immunologist)

My Dad recently finished a large B cell lymphoma battle. He couldn't use the 'best' chemo for it due to an underlying cardiac condition. The chemo he was allowed to undergo knocked it back well enough I guess. The bone marrow auto-transplant (stem cell) he was then able to do cured it. His last pet scan indicated that he was cancer free.

I truly hope you see similar results!
s.

You may be a candidate for one of the many CD19-directed chimeric antigen receptor (CAR) T-cells clinical trails. These treatments have proven to be very effective in the treatment of your type of lymphoma. You can go to clinicaltrials.gov and search the website for trials in your area. Chicago should have many going on there.

God bless you, striker1. I faced the prospect of a bone marrow transplant 17 years ago. I am praying for you.



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Words fail me now, just don't know what to say.

May God Bless you and family and medical team to guide you through this to a successful outcome.