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Multiple Lung Mets and need advice

caregiver3
Posts: 40
Joined: Oct 2017

Hello, It has been a while since I've posted on the board.  I think the last time I posted we were dealing with liver mets and that was scary.  The liver mets have been removed and ablated and my husband finished up 12 rounds of chemo 4 months ago.  He had his follow up with the oncologist last week and his CEA went up from 2.5 to 10.7!  His CEA has always been a good indicator for him.   So, the oncologist went ahead and ordered CT scans early and those were done this week.  The results were multiple nodules in the lungs, some were existing from previous scans that we have been "watching" for over a year.  The existing ones did shrink some with chemo, but now have grown again and there were new ones too!  Apparently they are in places that can't be biopsied easily and surgery is out of the question.  So, the oncologist basically had the conversation with us that with my husband having multiple lung nodules and some of them new,  that he is pretty sure they are mets, but said that he would prefer a biopsy to confirm but that is not possible.  So with CEA going up and also new nodules and growth of the others, he is assuming they are mets and told us that we would come back in 6 weeks and do CEA again and then go from there.  He also told my husband that if he chose to do chemo again, that would be all that could be done for him, that it wasn't surgical, and there was no cure and that chemo would only buy him time.  Apparently the FOLFOX with Avastin that he had 12 rounds of didn't work so well if these are mets. 

 

So, what do we do now?  I know a second opinion is what we should do, but we aren't in a position to spend lots of money to do so and don't live close to any of the top cancer centers either.  We have been very happy with the oncologist and he is on the tumor board at our hosptial and has consulted with other specialist about my husband's case, so not sure what else we can do.   

 

Thank you all for listening and any and all advice would be greatly appreciated!!

 

 

Poky
Posts: 1
Joined: Nov 2018

Hi Dear Caregiver 3.

I'm new to the site /blog so I'm not sure that this will be helpful, but here goes.  I was diagnosed in 2013 - tumor in colon and liver, Stage 4.  Chemo to get me ready for surgery, and surgeries in late summer 2014.  I was NED - no evidence of disease from then until Feb 2015 when the mets showed up in my lungs. I think surgical options for those of us with lung mets is rare.  So, I've done chemo pretty much non stop since 2015 with a few breaks.  FOLFOX, avastin, FOLFRI, with Vectibix (nasty stuff).  I was pretty stable until about 6 months ago.  I know that chemo every two weeks doesn't sound like a picnic, but it had kept my wonderful life going --working full time,  seeing my son graduate college, my daughter graduate HS, neices and nephews get married , babies added to the greater family -- really good stuff.  This spring my CEA started to rise, and the doc put me on LonSurf.  Another patient of my doc has been stable on it for a year with few side effects.  I had no side effects but -- bummer -- it didn't work for me.  So I've just started back on FOLFOX and getting hit by those good old side effects.  Still, I am having really good days and a few bad days.  There are lots of tools in the oncologists' bags so don't lose heart! Hang in there baby, and try something new or something old again.   My prayers are with you and him.  I just hit preview - hah, I'll have to fix my photo.  Good for a laugh. 

caregiver3
Posts: 40
Joined: Oct 2017

Thank you so much for posting.  Your post certainly gives me some hope!!!  Looks like you have been through it the last few years.  Prayers for you and your family also!! 

NewHere's picture
NewHere
Posts: 1030
Joined: Feb 2015

Came back last year in lymph nodes and lungs. Inoperable due to lymph nodes and lungs spread like wildfire.  (Thought I had it beat, the scan that showed it back was going to be the basically all clear, since would have been two years.)

Stayed off chemo for a year, tried immunotherapy and that did not work.  Had to go back on chemo since got really aggressive, including one in the back that went into spine.  One round of FOLFORI and got really sick.  Going back for Round 2 now after a month off

caregiver3
Posts: 40
Joined: Oct 2017

So sorry you are going through this too!!

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