what to do?

Wow! In the same boat.
Yeah, I have Diffuse Large B-Cell. Had/have large tumor in my lung, diagnosed May 18. I had B symptoms before I got treatment: night sweats, fevers, extreme fatigue and nausea, losing weight, plus coughing since mine was in my lung. Yeah, very sick by the time of diagnosis. I think it is interesting that you saw yours as a culmination after years of strange stuff going on. That's what I think with mine too, but never had anyone else verify that with a similar experience.

I had 6 treatments of R-CHOP. Tumor responded very well at first, and chemo removed or improved most of my B symptoms after 1st treatment. Now follow up PET scan on Oct. 22 showed that it is refractory, at least most likely. I had a biopsy to confirm that and I'm still waiting on the results, though realistically we all know what it is. I still feel perfectly fine. So far, the B symptoms have not returned, a great blessing.

So now dr. mentioned next for me is high-dose chemo and a bone marrow transplant, though we haven't discussed further treatment at length because we are still waiting on the verification from the biopsy results. I'm hearing on this discussion board other options for chemo aside from CHOP-R or the high dose, so I want to discuss that with him, just to find out my options. I've thought of a second opinion, but my doc is best of the best, and I didn't know if I felt like going the round of doctors again!!! I did that before I ever got a diagnosis, which is why I was so sick by the time I received treatment.

What would I do? I don't know. That is what I am trying to decide myself! Since my symptoms haven't returned, we seem to have some time yet to make a decision. But if the B symptoms have returned, I know that I would be inclined to start chemo just because those symptoms are nasty!! I know from experience! And if B symptoms are coming again, that means the lymphoma is getting worse. But at the same time, what if the 2nd opinion had a different thought....yeah, tough.

unknown said:

tough Jell-O
Hey Jim,

The university, where I'm getting the second opinion, has already moved my date back once! I'm thinking it's a no-go on edging any closer with my appointment time there.

I really guess discussing this all with my current doctor is probably the best route.. I can always start my salvage therapy, then get the second opinion! Financially, it's kinda dumb for me to get the second opinion at the university in the first place.. it's out of network, but insurance would pay most of it.

It's somewhat tempting to go to the network hospital and just have it all paid for.. I have met my out of pocket .. they have been shaking me upside down all year long! I don't even have any lint left in my pockets.. LOL

However-- I am curious about the menu at the university.. and I fear having to order from the boring menu at my normal hospital for a month. (Trite I know.) Lots of decisions to be made, and the quality of the Jell-O shouldn't be a factor.. but I'm not sure how they mess it up like that. I hesitate to put it on the pro and con list I'm making.

Before all this stuff starts, I've been enjoying food I like and chasing it with Zofran. My stomach is mellow now

Nathan

Hi Nathan
Nathan,

It's little things like Jell-O that can make a difference at times like this.
I always took some snacks with me to the hospital. Plus visitors would sometims bring me fast food and milk shakes. I will say that by the time I finished chemo, I had
that menu down. I recently visited a friend who has cancer at the same
facility and they have changed the entire menu (less choice now).

Here's a little entertainment for you. I don't know if you have time
to train a parrot to collect coins for you .

Nathan's Parrot

Now I won't speculate on what this young man does for a social life ☺.

Smile,

Jim

unknown said:

the chemo break continues!
So, I called the doc's office, and of course he is out until Wednesday! They ran my symptoms by the on-call dude, and they seem to think I am not dying that quickly, so my own doctor will call me on Wednesday.

I've decided, if he even hints at going ahead and starting chemo, I'm going to do it. Even though I may not like the Jell-O there, I haven't tried any of the cakes or pies yet. So, I guess I've made my decision for now.

Jim- I just watched the parrot video.. what a smart little thing! Good luck getting my cats to do anything like that. They're only good at sleeping! I love the internet! Thanks for the share!

-Nathan

Thanks
Okay, let us know what you find out.

Cakes and pies - my favorites - and cookies, brownies, fudge, pudding,
and anything chocolate - especially dark chocolate. I'm gaining
weight thinking about it .

You finally have a face - kind of impressionistic, Van Gogh-ish.
Cool!

unknown said:

My face
Hey Jim--

Still in a beautiful holding pattern. You know, my appetite has really dropped lately, so I have been just eating the things I love instead! I reside in the presence of a baking god, who often simply bakes for no reason at all. Just this past few days alone, I have enjoyed:

-Shoo Fly pie
-Cranberry scones
-Chocolate dipped shortbread owls
-Oatmeal cranberry raisin cookies
-Strawberry cookies
-Blueberry pie

Often with ice cream too! This being said-- my weight is in a steady holding pattern.. which it shouldn't!

And the face, yes. This is a photo from me a few years ago (with hair). I toyed around with it in Photoshop and thought it appropriate for my pic... I felt really boring without one!

Cheers!

Nathan

Sounds wonderful!
Sounds wonderful!