what to do?

Unknown

Hello cancer family,

I'm waiting patiently for my second opinion next Friday, and my oncologist seems to think it's okay to wait for the second opinion before starting up chemo again. (though he sounds nervous)

Pesky "B symptoms" have been starting to crop up.. mild fever for about a week, night sweats.. not so sure if I'm losing weight (I hate weighing myself-- it's depressing when it goes down).

I feel a lot of heat in my tumor area as well, sometimes some throbbing.. I'm considering calling the doc tomorrow and just starting the R-ICE as soon as possible. Chemo made these symptoms stop in the beginning...

Anyone here, who has been through similar.. what would you do? Or if you had B symptoms.. did you ever experience a recurrence like this?

There is so much nausea.. I'm starting to think it's the tumor too.. anyone out there have lymphoma in their liver?

I know no one has the perfect answer, because each has their own unique circumstances.. but I'd still like to hear from you if you have experienced similar circumstances. Heck, even if you haven't experienced something similar-- what would you do?


-Nathan

fullyloved

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.

jimwins

Hi Nathan
Hi Nathan,

That's a tough call. Is there anyway you can contact the source of the
second opinion and get it sooner?

I'd call your oncologist about your symptoms and get an opinion on that also.
I know this isn't much help. I'm sorry you're going through all this
and I hope your symptoms improve. Hopefully you can take something for
the nausea and other symptoms?

Hang in there, buddy and hugs,

Jim

Unknown

fullyloved said:

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.

same boat
Hey!

Thanks so much for responding.. I'm glad someone else out there has had similar roadblocks-- though I certainly don't wish this on anyone!

It really does sound like you are near a similar point in the journey as I am as well. Did the node in your lung shrink enough to possibly use radiation therapy?

When I originally rolled into the oncologist's office, I was sure a sight! I'm no where near that yet, but I think I am with you on trying to start chemo a bit earlier-- at least I can get that second opinion after the first cycle.

Keep me updated on your case as well.. there's nothing wrong with comparing notes!

-Nathan

Unknown

jimwins said:

Hi Nathan
Hi Nathan,

That's a tough call. Is there anyway you can contact the source of the
second opinion and get it sooner?

I'd call your oncologist about your symptoms and get an opinion on that also.
I know this isn't much help. I'm sorry you're going through all this
and I hope your symptoms improve. Hopefully you can take something for
the nausea and other symptoms?

Hang in there, buddy and hugs,

Jim

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

jimwins

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

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

jimwins

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

jimwins said:

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!

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

jimwins

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!