Is There Any More Room for “Some” Good News?

Sundanceh said:

Hey Chelsea...

Well, the spine still hurts pretty good...I really noticed it last year about this time (we were in the middle of dad's hoarder clean-out).  All of that lifting and bending and stooping last year really didn't help.....the last six-months I've griped to Kim how the pain would drive me up in the mornings (weekends) early, because it was just too painful.

I was still motoring pretty good and had just gotten so used to living with the pain, because I knew it was from the radiation and it was degenerative and expected to get worse etc.

One night last year, we had wrapped up at dad's about midnight and found ourselves at Walmart (only place open) and I got caught in an aisle...and it felt like the next step I tried to take was going to put me in a wheelchair....no joke.  It was scary and I couldn't figure how I was going to get to the car.

It all makes sense now...

The spine cancer was a real scare...and I'm so glad that we don't have to worry about that....I do meet with the doctor in another hour or so and hopefully he will confirm what I had read.

What has really made this worse, was the start of the lung pain which has gotten worse the past six-weeks....we've been 4 weeks testing and seeing doctors and still don't have the plan yet, but hope to this week. Breathing can become labored quickly...and when you draw in for breath, it hurts pretty good.  I feel the liver tweaking a little too, some little pains here and there, but not constant. 

I guess we'll just have to see on what shape I'd be in.  It's going to depend on what they do to me - and where I'm at as the window approached. 

Tramadol is not going to be the answer if the lung issue keeps worsening....last time the tumor just grew and grew until it began to close off my breathing and I was bent over in pain.  But even pain patches would not help enough to go if the pain got that bad.

We'll just have to see....as long as I could do some things and not detract from the experience for everyone else, I'll keep my options open.  It's their trip and I want them to have a good time with no worries.  We were just trying to see if we share it with them in any kind of meaningful way for a few days or whatever.

I'm going to use this trip as inspiration for my fight...as the new carrot at the end of my string....

Thanks, Chels:)

Disney looks like such a long way off right now...I'm only going to look at it if I'm in a position not to impede the others with my presence. 

disney
My mom came to Disney with us a couple of times and she cant get around very well. They have so many cool and fun restaurants that you can skip the expense of the parks and hang out at the pool all day and meet up for dinner. I'm going to keep pestering you on this....really want you to go! My hope is my husband is able to go in about 2 yrs so we can bring the little guy.

So glad...

to hear this GREAT news!  Keep that "sail" flying high!

Ellen

Sundanceh said:

No Cigar, Jeff...

Met with liver surgeon/oncologist today for meeting 1 of 3 with various docs this week....

He did confirm NO mets to the spine, so I read the report right:)

But, the talk is systemic chemo because of the multiple locations of course...I tried to bang the local route out of him, but from an "oncological" standpoint, I'm told it doesn't make much sense.

Part of that I buy....if you do a procedure and more mets sprout, in essence, we shoot another golden bullet we may need for the future....sitting at 9-years, we can't just open fire at will anymore....I was afraid of this.

The goal would be no new growth and that would be considered a victory.  From there, the plan might change to a localized attack, where we go for the liver, perhaps with TACE or to lung with SBRT or something.  Lots of scar tissue from two lung surgeries, but Dr. D. concurs that the pain I'm having in my lung is metastatic cancer related. 

From what I've described with the pain....and the lung pain is what is driving me crazy and what will need to be addressed at some point, or I'll be progressing to ever increasing pain meds. 

I asked for something other than Hydrococone, Darvocet, or Tramadol....and surprisingly, this new onc wrote me a script for low dose Dilaudid...so we'll see how that goes.  I asked about a Fentanyl patch...and he said a low dose of that might come later. 

They want to take out my spleen now to raise my platelet count...this is a setup for Oxy and I have to meet with the regular onc about the chemo plan he has in mind.  I'm not going to be happy with permanent neuropathy in my feet and hands...already have some but liveable....to get further impaired and knowing that Oxy is not the answer would make me feel violated.

Even if it helped in the short term.....

I'd lean back towards Irinotecan even though that nearly killed me...but I'll have to make that decision after the consult.

I don't know, Jeff.....

I might put something together in a post....there was some good stuff...and it looks like life-changing decisions are now going to be made as curative is gone now....and no longer a part of my vocabulary. 

I'm going to have to lean on you and Phil now to make it farther than I could....

If the fight doesn't go favorably and I'm feeling bad from the treatments with no real response, I might have to start learning how to let go. 

I dread the chemical fight....I didn't want it....

We talked about the Hallwang approach and he said folks do good there for a couple of years and then their cancer comes back even harder than it was before. 

I'll need another post......

I'll exit with him telling me that I'm in the 1% bracket that lives this long with liver and pulmonary involvement....he said it is truly amazing that I've made it this far battling actively for these many years.  

I hope he is part of my care plan...I like this new guy....he gives it to me straight...and that's important, because there are many decisions that I need to make now, based on what he told me. 

And that's important....

One of the reasons, I lay it out the way I do here.....we gotta' know, because a bevy of big decisions come with the knowing. 

Anyway, out of the frying pan....and into the fire now....

I won't say anymore right now.....

Sundanceh

i have been quiet about your situation for sometime now ,we had a very long church service yesterday and well all i can say on here it was very moving.speaking from my point of view i did choose to have my spleen out to get my platelets up because if i did not go that route i saw the battle in no more fight mode so i said lets go for it.back in 2011 before my liver resection my surgen wanted me to try oxy again to shrink the spots on my  liver for resection.i had a different onc in 2009 and she gave me too much oxy despite me telling her all my symptoms she finally stopped me at 10 tx but now i have severe neuropathy in hands and feet.back to 2011 i trust my surgen so much that i said i would try the oxy again but was scared to death.i did 1 tx and imediatly felt the coldness hurt cant swallow hurt and most of all the pain in my fingers felt like someone had hit all my fingers with a hammer.told new chemo onc about my first tx back on the oxy and asked him if you get neuropathy to bad will it cause you to not be able to walk and he said yes.so he stopped the oxy and we went for irritatecan which for me was a better cocktail but i know you have had a very hard time with this one.since i am inoperable my poison for now is xeloda+avastin and so far it is keeping the spots from growing.is this a road that you think you might be able to travel? i know systemic chemo scares me as it does you and frankly as much as i have grown closer to the Lord i dont know if i could even go that route again.well i better get off here dont want to start writing like you.take care my friend and be brave like the lion you are....Godbless....johnnybegood

Sundanceh said:

Hi J:)

It's difficult to be twisting in the wind like this...one way this...the other way that...

I guess I just have to start being more realistic now...this onc wants to "reset" my clock to gain more time...this one really seems to be interested in QOL. 

I'm just gonna' meet with the rest of the docs this week....listen to their recommendations...and then think about the cold hard truth I'm being presented with....and try and make the best decisions going forward.

Maybe it will become clearer then...

The hopes are that the systemic would lead to localized treatments, which would gain me a foothold...I'll probably be willing to do some of that....but just don't know about the Oxy yet. 

I want extension....but not at all costs...

In the end, he said it would catch me at some point....I guess it's always hard to hear that news...but, he's keepin' it real.

We'll just have to engage first and then see...

Right now, I just want this pain to get under control....it's hard to concentrate and think sometimes...

We'll start with pain medication...and hopefully they can apply a palliative procedure at some point to ease the condition if they can't do anything else with it.

Thanks for writing in today, J:)

Dear Craig,

Don't forget that your pain, even though feels like it is in the long area, it can be referred pain from your spine, because if a nerve is pinched wherever it goes, that's where you are gonna feel the pain not at the source.

we all wish you the best outcome,

Laz

Sundanceh said:

Laz

It's in several spots in my lower back....we see the bulges and dessications at several spots...and a narrowing of the spine. MRI spells it out nice and clear for me....and doctor concurs.

However, the pain in my back is NOTHING, compared to the problems with my pain in the lungs, which is beginning to really take off....there is metastatic cancer there, but can't operate at this time.....chemo's coming....and we'll see if that shrinks or helps until they can look at this. 

Breathing can become labored quickly.....can become shallow because to breathe in too deep, hurts like a knife stab and twisting.  Pain can make you stop in your tracks....it's still early but it has gotten worse in the past month just before the re-dx....

I've tried ice packs before....yeah, they reduce swelling etc.  But, it really did not help me much then....and it certainly won't help with the lung problem....the spine I can live with....it's in a degenerative state anyway.

The issue right now is pain control until we can get something started....still meeting with doctors all week......

Anyway, we'll see how it goes....thx.

The concensus is that the cancer will get me long before we can do anything on the back at all. 

just wanted to check in with you Craig

and let you know I've been thinking about you a lot. So glad it's not in your spine. And it's still a tough situation. Sigh. And you've written well about how you're thinking you're way around the options, how you are dealing, and then "we'll see how it goes..." I guess that's all that we can ever do eh? Your words continue to be helpful, to me, to others. I hope the pain management works soon. That will help a lot. Hugs to you. 

 

Love, Leslie

Happy, Happy, Joy, Joy!

Craig - Wonderful news indeed!  So happy for you, sad that you have spine problems, but at least no cancer.  I hope the rest of your tests contain rays of sunshine in them.  Good luck and keep us posted.  Traci

Sundanceh said:

Hi J:)

It's difficult to be twisting in the wind like this...one way this...the other way that...

I guess I just have to start being more realistic now...this onc wants to "reset" my clock to gain more time...this one really seems to be interested in QOL. 

I'm just gonna' meet with the rest of the docs this week....listen to their recommendations...and then think about the cold hard truth I'm being presented with....and try and make the best decisions going forward.

Maybe it will become clearer then...

The hopes are that the systemic would lead to localized treatments, which would gain me a foothold...I'll probably be willing to do some of that....but just don't know about the Oxy yet. 

I want extension....but not at all costs...

In the end, he said it would catch me at some point....I guess it's always hard to hear that news...but, he's keepin' it real.

We'll just have to engage first and then see...

Right now, I just want this pain to get under control....it's hard to concentrate and think sometimes...

We'll start with pain medication...and hopefully they can apply a palliative procedure at some point to ease the condition if they can't do anything else with it.

Thanks for writing in today, J:)

Hi...

Craig,

I was really sad to hear about your latest news, arg!   I've had recent reccurrance, mets in the liver and abdomen wall. I'm back on Oxy, 5fu, and certuximab, I'm realizing some neuropathy, but it's been manageable with only some tingling in my right hand, nauseau, and unrelentless gas, we're taking major PSI's!!!   I had a scan several weeks ago and the Oxy is working, my mets are dramatically improved.  The plan is to take 8 doses of Oxy and then switch over to something else and hope and pray that it keeps the remaining cancer in check.  For the record, when my Onc mentioned chemo again, I wasn't sure i wanted to go down that road again, I'm well over 50 doses and I'm tired of it all!  However, it took me all of 10 minutes to realize I had no choice but to do chemo again, and so far it's proven to be a life extender.  I hope and pray that if you do the Oxy you get some great results.

Whether you know it or not, you're blazing a trail for others to follow.  Hang in there Craig...

Best regards,

Buster