Folfox stopped working... HELP!

Varmint5
Varmint5 Member Posts: 384 Member
in Colorectal Cancer #1
Hello. I've posted before about my daughter and her situation - she just turned 33, is married and they had their first child in August, and she was diagnosed stage IV cc in October, 2011. She had almost immediate loop ostomy done and started chemo and after two treatments of Folfox, started 28 radiation treatments. It's been hard and she's fought blood clots, severe side effects, everything else, but it seemed to be working and shrinking all the tumors (colon and liver).

She had Folfox right up until two weeks before her colon resection on Feb. 23. Her CEA and LDH had plateaued then started climbing day of last chemo before surgery and now she's been off chemo since then. She recovered well from her colon resection - still very pale, tires easily, etc. but was doing well and released Wednesday to drive and pick up her baby. Labs done Wednesday in preparation for restarting chemo show CEA climbing upward again back to where it was when diagnosed in Oct. (2000's) and LDH high again, too. Now oncologist wants to switch to Folfiri starting March 28.

When she is hospitalized the oncologists from the oncology group (big cancer center, big city, currently applying for NCI status) who are doing rounds speak of liver-targeted therapies that might work for her, yet her oncologist never mentions any of this. He says her liver is inoperable, period. And he has said he confers with colleagues. The surgeon said that no "surprises" were found during her colon resection, that four nodes were positive and nothing else found. She's had a CT since the surgery, but only to check for abscesses, since she had a bad infection.

So I have taken it upon myself to act on the research I've done and info gained here on this site. I called a local guy who was treated for stage IV with liver mets by oncologists within 100 miles but they told him his liver was too complicated for any surgeon in that city and they sent him on to "the best" at our state's NCI cancer center. His surgeon there is Chief, Division of General Surgery and Section of Transplant Surgery, and does HAI, RFA, chemoembolization, all types of complicated liver surgeries and transplants, etc. The guy I talked to with the liver mets said he had one section of liver removed and RFA on the inoperable tumors and has been cancer-free ever since (two years, I think).

He gave me this doctor's email address and I contacted him today. And I heard back from him! He wants us to send him her scans, operative report, oncologist's reports, etc. and he will determine if he thinks he can help her. His email was very nice. So first thing Monday, I will gather this info and overnight it to him.

I am frantic with fear and having a hard time with it. Just trying to breathe in and out. I am so afraid he will turn us down, and then what? I just don't know what to do.

Have any of you experienced this situation where the Folfox stops working? What then? I am so scared this doctor will turn us down. Can we beat this beast down again? HELP!

Comments

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #2
    I understand how frantic you
    I understand how frantic you must feel. Waiting to hear from doctors is frustrating, but it sounds like you were given a good lead, so I would follow through with that. I have only had the folfiri treatment for stage 1V cancer, I did 10 months of it and have now been off chemo. for six months with no progression so far on my scans. During folfiri I worked throughout and did the usual mom things, although my kids are much much older, but I went to their games etc. with the 48 hour fanny pack. Some people have a rough time with side effects, fortunately I did not have anything that wasn't manageable. Looking after a baby is another ball game though, and the fatigue will probably be an issue. Others with more experience I am sure will chime in.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #3
    smokeyjoe said:

    I understand how frantic you
    I understand how frantic you must feel. Waiting to hear from doctors is frustrating, but it sounds like you were given a good lead, so I would follow through with that. I have only had the folfiri treatment for stage 1V cancer, I did 10 months of it and have now been off chemo. for six months with no progression so far on my scans. During folfiri I worked throughout and did the usual mom things, although my kids are much much older, but I went to their games etc. with the 48 hour fanny pack. Some people have a rough time with side effects, fortunately I did not have anything that wasn't manageable. Looking after a baby is another ball game though, and the fatigue will probably be an issue. Others with more experience I am sure will chime in.

    give your girl a hug, love is the key
    Ok learn to meditate fast, if you like it, teach your girl. It beats watching tv in hospital.
    Get the best health advice you can, your girl and you have some challenges, no doubts.

    You both might benefit by saving as much health as you can, I feel you both need the reserves for the battles ahead.
    That said boomed won a race believing they could not win.

    I would fly and meet that surgeon, I would give his recptionist chocolates organic of course. I pray he says yes to operate, send him the best scan. I always beg with a smile, I have had the best care so far from conventional and alternative. Expect nothing less, accept nothing less and demand the best. When you get then rest.

    Love and prayers.

    Hugs,
    Pete

    Ps love is more important than all else, even diet etc etc. Don't forget the hugs.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #4
    pete43lost_at_sea said:

    give your girl a hug, love is the key
    Ok learn to meditate fast, if you like it, teach your girl. It beats watching tv in hospital.
    Get the best health advice you can, your girl and you have some challenges, no doubts.

    You both might benefit by saving as much health as you can, I feel you both need the reserves for the battles ahead.
    That said boomed won a race believing they could not win.

    I would fly and meet that surgeon, I would give his recptionist chocolates organic of course. I pray he says yes to operate, send him the best scan. I always beg with a smile, I have had the best care so far from conventional and alternative. Expect nothing less, accept nothing less and demand the best. When you get then rest.

    Love and prayers.

    Hugs,
    Pete

    Ps love is more important than all else, even diet etc etc. Don't forget the hugs.

    Howdy...
    I just wanted to tell you that IF she goes with Folfiri I had FAST and awesome results with it. I had 4 tumors in liver (inoperable) and 15+ in my lungs...Folfiri wiped them all out in less than 6 months and the ones is the liver never returned...KNOCK ON WOOD! Just wanted you to know there is hope...LOTS of it...so keep your chin up....she is gonna kick cancers butt!!!!

    Jennie
  • Varmint5
    Varmint5 Member Posts: 384 Member
    #5
    idlehunters said:

    Howdy...
    I just wanted to tell you that IF she goes with Folfiri I had FAST and awesome results with it. I had 4 tumors in liver (inoperable) and 15+ in my lungs...Folfiri wiped them all out in less than 6 months and the ones is the liver never returned...KNOCK ON WOOD! Just wanted you to know there is hope...LOTS of it...so keep your chin up....she is gonna kick cancers butt!!!!

    Jennie

    Thank you Joe, Pete and Jennie...
    I knew I would feel better after I heard from some of you, and I do. I am worried about the Folfox losing effectiveness and wondering if the Folfiri will work. Praying it will. The Folfox seemed to be working well in the beginning.

    I am glad she is agreeable to seeing the liver surgeon about targeted therapies. Thank you all so much for your support!
  • wolfen
    wolfen Member Posts: 1,324 Member
    #6
    Varmint5 said:

    Thank you Joe, Pete and Jennie...
    I knew I would feel better after I heard from some of you, and I do. I am worried about the Folfox losing effectiveness and wondering if the Folfiri will work. Praying it will. The Folfox seemed to be working well in the beginning.

    I am glad she is agreeable to seeing the liver surgeon about targeted therapies. Thank you all so much for your support!

    Hi Varmint
    I'm sorry to hear that your daughter has stopped responding to her current treatment. I'm glad you have taken the initiative to get another opinion and that she is open to that suggestion. I remember that you were less than confident with her current onc. So many here have recommended several opinions, when necessary, and many have had much more favorable results when the doctor does not have a defeatist attitude.

    I will be thinking of you and hoping that this new doctor will be able to operate or provide another method of treatment. I know there are many types of chemo that have been successful, and Phil talks about the HAI pump, as I'm sure you've read.

    Please let us know what the new doctor's opinion is and in the meantime, NEVER LOSE HOPE and remember to breathe.

    Luv,

    Wolfen
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #7
    trying to make lemonade
    Surgery is usually a key element for a long term NED. You're looking for a lever to turn this thing around.

    Sounds like she would need a better than average HAI response to wipe down the liver mets to resectable liver territory.

    You may want to investigate both molecular testing (fixed tissue slides stained with biomarkers) and chemosensitivity testing (live cells again chemo combos) for the chemo portion, figure about $4000-5000 for each lab part. I believe some places do both Folf-- and HAI combos to try to regain control.

    We've had some benefits with CA19-9 guided cimetidine, and targeted supplements with different stage IV mets and treatments after turning over many stones. I advocate turning over lots of stones to try to cope with a specific situation.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #8
    It's Scary, possibly harder in some ways on family
    Whenever I hear that someone has mets to the liver and their oncologist says they can't do anything, I can't help but think that THEY can't do anything, not that there's nothing that can be done. Two very different scenarios. You do have to understand that every case is different but I was treated with HAI Pump Therapy (and I personally know 1/2 dozen more) who had the same procedure with the same Dr at MSKCC and we've all had or are having very positive results.

    Hopefully you will hear good news, but if you don't hear something positive try another cancer center...
    -phil
  • Varmint5
    Varmint5 Member Posts: 384 Member
    #9
    PhillieG said:

    It's Scary, possibly harder in some ways on family
    Whenever I hear that someone has mets to the liver and their oncologist says they can't do anything, I can't help but think that THEY can't do anything, not that there's nothing that can be done. Two very different scenarios. You do have to understand that every case is different but I was treated with HAI Pump Therapy (and I personally know 1/2 dozen more) who had the same procedure with the same Dr at MSKCC and we've all had or are having very positive results.

    Hopefully you will hear good news, but if you don't hear something positive try another cancer center...
    -phil

    HAI pump...
    Stories I've read of the HAI pump - yours and several others - have played over and over in my mind for several weeks now and this is why I am corresponding now with a Dr. who does HAI pumps at an NCI cancer center here in our state. I am gathering all the scans, operative reports, onco reports, etc. to overnight to him on Monday for review. Please pray he can help her.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #10
    Varmint5 said:

    HAI pump...
    Stories I've read of the HAI pump - yours and several others - have played over and over in my mind for several weeks now and this is why I am corresponding now with a Dr. who does HAI pumps at an NCI cancer center here in our state. I am gathering all the scans, operative reports, onco reports, etc. to overnight to him on Monday for review. Please pray he can help her.

    You got it!
    Some doctors feel its outdated therapy. I told my Onc that and her reply was that she hears it too and that many of her patients are doing well.
    Go figure...
    You guys are in my thoughts, I hope this new doctor has a plan
    -phil
  • Erinb
    Erinb Member Posts: 293
    #11
    PhillieG said:

    You got it!
    Some doctors feel its outdated therapy. I told my Onc that and her reply was that she hears it too and that many of her patients are doing well.
    Go figure...
    You guys are in my thoughts, I hope this new doctor has a plan
    -phil

    Go to a hospital where they
    Go to a hospital where they have experience. My husband also has liver mets and went to UPMC in Pennsylvania and Mayo in Florida. No one has refused him, however his oncologist discouraged the liver procedures and decided to not see my husband if we continued with ablation from the mayo clinic. We found a different onclologist and things are still going well.There are many other treatment options besides folfox even though it might seem like it, there are. My husband was 35 when diagnosed and we had an 8 month old at the time. I feel for your daughter and know how difficult this must be for her family and you.
    Erin
  • jasminsaba
    jasminsaba Member Posts: 157 Member
    #12
    idlehunters said:

    Howdy...
    I just wanted to tell you that IF she goes with Folfiri I had FAST and awesome results with it. I had 4 tumors in liver (inoperable) and 15+ in my lungs...Folfiri wiped them all out in less than 6 months and the ones is the liver never returned...KNOCK ON WOOD! Just wanted you to know there is hope...LOTS of it...so keep your chin up....she is gonna kick cancers butt!!!!

    Jennie

    I don't mean to ...
    hijack this topic but wanted to let you know, Jennie, that your post has provided much hope and assurance to me. My mom's liver met was wiped out with Chemo alone (Folfox + Avastin) so surgery was not indicated/encouraged/performed.

    Since everyone is always talking about surgery being the ONLY way to treat liver mets, it's good to come across those who have had success with chemo alone.

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