Kathleen808 and others with distant lymph node involvement - also bone involvement ?

Sorry that you have a new
Sorry that you have a new issue to worry about. You think you know what's going on and then you get new info. that knocks the wind out of you. It's a vulnerable position that we are all in.

I have no info on this other than it would be quite unusual for him to have bone mets. I responded to keep this thread going. I'm curious about Kathleens response.

Does anyone know if chemo alone can kill a lymph node? When a specific node lights up on one scan but not the next, does that mean it's permanently killed off? Likely, after a chemo break it would strengthen and eventually reappear on a scan, right? (I'm really hoping to hear that chemo alone does indeed kill lymph nodes. LOL).

Chelsea

lymph nodes

Hi Jen,

 

**** had surgery in May 2010 that removed the cancerous lymph nodes.  He had follow-up chemo.  He was off chemo from October 2010 until January 2011 when a scan showed the cancer had spread to his lungs.  The lung mets have been stable, then disappeared, then popped back up and increased a bit in size.  No other lymph nodes have shown up.  His chemo was switched about 3 months ago and he will have a scan next week.  I'll let you know how it goes.

Best to you.

Aloha,

Kathleen

My experience

I don't post here much anymore, but check in now and then. 

I have never had any organ involvement.  I had distant lymph nodes only.  I have had multiple nodes involved, including para aortic (which no one would touch because they were behind my heart and against my spine).  Chemo knocks some out for good, but others come back any time chemo is stopped.  I finally did radiation to get rid of my 2 stubborn original nodes from my upper abdomen (and 3 more present at that time).  That bought me a chemo break.  During my break I had progression to more nodes and to bones.  I had tumors in my shoulder, collarbone and in my spine at T1, T2, T5 and T6.  I do wonder if those para aortic nodes against the spine had something to do with this spread to the spine?  T5 and 1/2 of T6 already had maximum lifetime radiation due to being in the field of radiation from my earlier treatments.

 

I had Tomotherapy to go after all of those bone mets, except for T5 and 1/2 of T6.  I get monthly Xgeva shots to help strenthen my bones.  I did 5 tx of Irinotecan and Zaltrap, with amazing response.  My CEA was back to normal withint 3 tx.  A scan after 4tx showed all the nodes but one were shrunk back to normal.  Since it was CT and not PET, we don't know if that one was even active.  Unfortunately I got some very bad side effects that would have eventually killed me, so I had to quit the chemo.  My CEA was the lowest it has ever been, at 2.0 after my 5th tx.  I just had STAR ablation RFA for spinal mets, and it went quite well.  I have a little pain still, but nothing compared to what I had before.  I am off all pain meds! 

 

My experience with bone mets is that you KNOW when you have them.  They are very painful.  I complained about my shoulder for months, and my collarbone and back, before we finally figured out that it was cancer.  My onc didn't think it could be.  The other odd thing in my case is that while CEA is a great indicator for me, and very responsive to lymph node met loads, my bone tumors do not seem to affect it.  Strange.  I've had PET and MRI to check on bone mets.  CT is not a good scan for those.  The same goes with node mets.  CT really isn't very good for those - PET is best.  I'd love to tell you that once they remove node mets that no more will pop up, but the majority of people I know have had more show up later.  I only know of two that have not (one is ****, Kathleen's husband who had spread to lungs, but not more nodes).  The other is a friend here in MN who had just one lone node met one year after being NED.  He had it removed and 12 tx FOLFIRI and has remained NED for 2 years now.  There is a small group of us on Colon Club that call ourselves the "Olymphians" who have been playing the "whack-a-mole" game with lymph node mets long-term.  But of our group, I think I am the only one with spread to bones so far.  (I could be wrong.)  Colon doesn't seem to go to bones as often as rectal.  I do know a few with rectal who have had mets to the sacrum.

Kathryn_in_MN said:

My experience

I don't post here much anymore, but check in now and then. 

I have never had any organ involvement.  I had distant lymph nodes only.  I have had multiple nodes involved, including para aortic (which no one would touch because they were behind my heart and against my spine).  Chemo knocks some out for good, but others come back any time chemo is stopped.  I finally did radiation to get rid of my 2 stubborn original nodes from my upper abdomen (and 3 more present at that time).  That bought me a chemo break.  During my break I had progression to more nodes and to bones.  I had tumors in my shoulder, collarbone and in my spine at T1, T2, T5 and T6.  I do wonder if those para aortic nodes against the spine had something to do with this spread to the spine?  T5 and 1/2 of T6 already had maximum lifetime radiation due to being in the field of radiation from my earlier treatments.

 

I had Tomotherapy to go after all of those bone mets, except for T5 and 1/2 of T6.  I get monthly Xgeva shots to help strenthen my bones.  I did 5 tx of Irinotecan and Zaltrap, with amazing response.  My CEA was back to normal withint 3 tx.  A scan after 4tx showed all the nodes but one were shrunk back to normal.  Since it was CT and not PET, we don't know if that one was even active.  Unfortunately I got some very bad side effects that would have eventually killed me, so I had to quit the chemo.  My CEA was the lowest it has ever been, at 2.0 after my 5th tx.  I just had STAR ablation RFA for spinal mets, and it went quite well.  I have a little pain still, but nothing compared to what I had before.  I am off all pain meds! 

 

My experience with bone mets is that you KNOW when you have them.  They are very painful.  I complained about my shoulder for months, and my collarbone and back, before we finally figured out that it was cancer.  My onc didn't think it could be.  The other odd thing in my case is that while CEA is a great indicator for me, and very responsive to lymph node met loads, my bone tumors do not seem to affect it.  Strange.  I've had PET and MRI to check on bone mets.  CT is not a good scan for those.  The same goes with node mets.  CT really isn't very good for those - PET is best.  I'd love to tell you that once they remove node mets that no more will pop up, but the majority of people I know have had more show up later.  I only know of two that have not (one is ****, Kathleen's husband who had spread to lungs, but not more nodes).  The other is a friend here in MN who had just one lone node met one year after being NED.  He had it removed and 12 tx FOLFIRI and has remained NED for 2 years now.  There is a small group of us on Colon Club that call ourselves the "Olymphians" who have been playing the "whack-a-mole" game with lymph node mets long-term.  But of our group, I think I am the only one with spread to bones so far.  (I could be wrong.)  Colon doesn't seem to go to bones as often as rectal.  I do know a few with rectal who have had mets to the sacrum.

Hello

My uncle, 45, has a similar situation.  He is stage IV colon, with lymph nodes which lit up along the para-aortic lymph area as well as his clavical.  His first round of chemo was successful in shrinking his tumor enough for a resection, and then they did radiation to kill of remaining lymph.  It worked.  Although I wish his doctor would've considered advising him to do the HIPEC during the resection when he had the chance because at the time the cancer was localized in the abdominal cavity.  After being NED post raidiaiton for two months, he has had a recurrance and is back  on the chemo.  Like you Kathryn, he has never had anything light up on his organs.  I'm so sorry this has reached he bone, and pray this is only another speed bump in your road to recovery.  For now, I am researching all the available trials which are testing new vaccines and gene-therapu- the more cutting edge stuff- to see if he may qualify for any and to present to his doctor.  Although I have faith in his doctors.  I'm a control freak and don't feel comfortable leaving his life in he hands of few people who may not have all the time in the world to research the up and coming treatment options.