guidance...help please

Kathleen808
Kathleen808 Member Posts: 2,342 Member

Hi Everyone,

As I shared **** had a scan 10 days ago that showed growth in the lung mets and lymph nodes.  We have been pursuing opinions and some opinions have come to us from contacts.  His onc here in Hawaii still things Regorafenib is the way to go and scan in 6 weeks.  Dr. Lenz at USC thinks he should go on Folfox + Avastin.  **** saw him on Monday.  **** was on Folfox and had growth at the very beginning, almost 5 years ago.  Dr. Lenz' thought is that the cancer changes so much it may work now.  To throw another thing at it someone who works very closely with Avastin thinks that Avastin has probably done all the good it can do at this point. 
We will be going ahead with the genetic testing and setting up a biopsy next week we hope.  With that testing, our hope is they will then be able to test the different drugs against ****'s specific cancer and see what works so we aren't doing this hit and miss and scan in 6 weeks.  
How do you make decisions if you have two different opinions?  Has anyone retried a chemo that failed in the past but it works the second time around? 
This is so hard!!!!

Thanks.  Really, thank you for any input or any stories about Folfox and Avastin.   Or, any stories about regorafenib.

Aloha,
Kathleen

Comments

  • maglets
    maglets Member Posts: 2,576 Member
    hello Kath and ****

    Hi guys....just me with absolutely no advice....just sending thoughts and love.  Ahhhh **** such a long long fight...I wish you could catch a break now.Thinking of you Kathleen...starting to turn cool at nights here now....34 degrees with frost one night so time to dig out the mittens.  So many decisions for you to have to to face. Hugs to both of you, mags

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    I have heard about

    I have heard about introducing a chemo used before several years later due to the cancer mutating from my oncologist. I think you might have answered your own question. Or should I say hopefully the genetic test will answer your question. I think that was a smart decision to do the test.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    opinions

    How do you make decisions if you have two different opinions?

    Before tx change:  Read up, and get as much data as much as possible. Work on 3rd, 4th etc opinions until the story makes sense.  

    During tx:  Gather more and better data (usually blood data) than normal.

    If we have two options we don't like, we look for [someone with] a third option.  We look to decrease toxicity and add coverage of biomarkers or pathways.  

    Sounds like you are still looking for a better offer.  Surely you've mentioned our various tales of cimetidine, PSK, celecoxib, metformin, vitamin D3, IV vitamin C, etc.  What do they say beyond "not standard" to complementary additions?  How far can your naturopath (if I recall correctly) provide CAM support to standard chemo?

    Did Dr Lenz say anything about adding Celebrex to common treatment stacks?  Your note leaves me unclear whether you will attempt direct chemo testing on live cell clusters, or  histopathology and genetic testing on fixed slides alone.

    best wishes

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Kathleen

    It is tough to know which way to turn I know.  Before you had mentioned also going to Sloan.  Is that still on the table?  If so, it might help you in determining what path to take or offer new options. 

    I haven't really heard of any successes with regorafenib but it has only been on the approved list for about a year.

    How quickly will you get the genetic testing results back?  Sooner than 6 weeks?  If not, I think I might try the Folfox in the mean time.  It makes sense that with tumor mutation that it could now be effective.  Then if the testing comes back that the regorafenib or something else is a bettter choice, switch it up then.  But that is just my opinion not based on any facts.

    Wishing you and **** to receive some clear direction on the best path to follow.

    Hugs and love to you and your family,

    Marie who loves kitties

     

  • KathiM
    KathiM Member Posts: 8,028 Member
    I am too far away from treatment to share....

    BUT, I WILL say, that I kept getting '2nd opinions' until I felt comfortable.....

    AND, I used 'complementary treatment'....as my beau calls it 'woo woo'....always asked first....When statement was made "It will not help"....I always responded with "Yes, but will it HURT?"  If the answer I got was "No, but...."  I went for it!!

     

    Sending big, warm hugs to you both....sigh...wish I had a magic wand....

     

    Hugs, Kathi

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Such a hard situation.

    I'm really sorry you guys are facing this.  Is there a Tumor Board in your state that could look at ****'s case?  I got a second opinion, but my regular onc also took my case to the Board to get further input.  In my case, it didn't change the plan, but you never know.  The more eyes on a difficult case, the better, it seems to me.

    And I have read of people revisiting chemos after several years, and getting results after the original "failure".  If **** is able to tolerate the side effects of the FOLFOX while waiting for the tumor to be tested, seems like that would be worth a shot.  It just depends on how he feels about facing more chemo.  

    Big hugs coming to both of you~AA

  • sasjourney
    sasjourney Member Posts: 395 Member
    Hi Kathleen,
    I am so sorry

    Hi Kathleen,

    I am so sorry that **** is going through this and you have to make these tough decisions.  We have a very similar situation as I have a few lymph nodes and some small spots on the lungs that appeared earlier this year.  My onc. is Dr. Lenz and he put me back on Folfox and Avastin when the lymph nodes were growing and Folfiri and Erbitux were no longer working.  I had not been on Folfox and Avastin for three years.  I am on a low dose of it because my white cells were dropping too low and I was having to skip treatments.  My last scan showed no growth and everything has remained stable even with the lower dosage. My CEA actually dropped a little, too.  Although, I wish the mets had completely disappeared, I am happy that I don't have any growth on a tolerable treatment regime.

    I will be praying for you and **** as you decide your next treatment path.

    Hugs,

    Sara

     

      

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Opinions

    Sometimes getting second opinions can be confusing, especially if you trust both doctors.  Like others have said, try a third opinion, if possible.   Wishing you the best outcome and please keep us informed.

    Kim

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Kathleen...

    My onc said that the Rego drug does not offer much in the way of life extension.  A couple of months average is what I remember him saying about a study.  And he said that it was really bad on hand/foot syndrome....apparently harsher than Xeloda. 

    Know that would interfere with ****'s active lifestyle of surfing and such if the hand/foot thing was bad enough....but again, he might react well to it....he's done so good with things it has amazed me over the years.

    The other thing I would mention is that I am taking a new drug now (ZALTRAP) that is being substituted instead of Avastin.  I am taking that in conjuction with the full Folfiri package, pump included. 

    I've had 3 doses of it so far...#4 tomorrow during another infusion. Not too sure what the side effects are at this point as I'm feeling poorly from the other chemo drugs.  Safe to say it probably packs some kind of a wallop. 

    Anyone perhaps this new drug might be of benefit to ****......the Rego is available for me, but he feels that the efficacy would not be appropriate for me at this time....so we Zaltrap for now and keep this one available. 

    All my wishes for you both.  I'm saddened to read the news of progression.  I fear progression as well on my first scan....I'm almost at the point where I just don't want to know anymore. 

    But, understandably it would be devastating news for me as it is for you guys right now.

    Thinking of you both:)

    -Craig

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Oh, dear

    Oh, Kathleen! I hate to read this news! Praying that the very best answer will be revealed.

     

    *Hugs*

    Gail

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Kathleen

    oh my dears, I hope that whatever is tried works weel.  I think a third opinion would help, anod checking a little more into how well the Regorafenib really works.  Has he been on other chemo's like Irinotican and Erbitux combo yet?  That worked great on many of my tumors (if **** is KRAS wild).

    will be praying hard for you both!

    Winter Marie

  • coloCan
    coloCan Member Posts: 1,944 Member

    Kathleen

    oh my dears, I hope that whatever is tried works weel.  I think a third opinion would help, anod checking a little more into how well the Regorafenib really works.  Has he been on other chemo's like Irinotican and Erbitux combo yet?  That worked great on many of my tumors (if **** is KRAS wild).

    will be praying hard for you both!

    Winter Marie

    There's something called Ramucirumab, which may prove

    helpful tho it failed with breast cancer; works somewhat like Avastin.....

    www.medscape.com/viewarticle/811715

     

  • Happyhar
    Happyhar Member Posts: 49
    Onc Likes Folfox

    My oncs (Florida and Mich) seem to like their results with Folfox on CRC. I had colon resection followed by a full round of Folfox in 2010 and was ned almost 3 years. Just had a lung met VATS wedge resected and just started Xeloda to zap any remaining bugs. Lung Surgery was a breeze. No lympth node involvement this time. Our situations aren't that similiar but sometimes others experiences help. So many options, so many decisions. Prayers for comfort and guidance.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    gem; erbb2

    Lisa42 got 1.5 yrs treatment out of her gemacitabine - xeloda - avastin combo, that had some support from Dr Lenz' group.  Likewise there are other  gemcitabine combos and the nutrition-immune support angle could be increased greatly, too.

    Also Gleevec (imatinib) has been used with some success in a subset of 3rd-4th line patients (ca 10-20%?) with overactive Erbb2, a test that may be in your package. So far we prefer to try to modulate Erbb2 naturally. 

     

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    tanstaafl said:

    gem; erbb2

    Lisa42 got 1.5 yrs treatment out of her gemacitabine - xeloda - avastin combo, that had some support from Dr Lenz' group.  Likewise there are other  gemcitabine combos and the nutrition-immune support angle could be increased greatly, too.

    Also Gleevec (imatinib) has been used with some success in a subset of 3rd-4th line patients (ca 10-20%?) with overactive Erbb2, a test that may be in your package. So far we prefer to try to modulate Erbb2 naturally. 

     

    I'm on regorafinib now, and I

    I'm on regorafinib now, and I have not had any bad side effects, nothing I cannot manage and I work.  Kathleen I already posted on the colon club forum but not sure if you saw it.   If you are thinking of clinical trials  some you will be disqualified from if you've had regorafanib.   So, do your research.   I find this drug far easier than the infusions, I've had folfiri with avastin,  folfox.     I've recently had scans,  showed shrinkage in lung thingys .... BUT I have a lesion in my abdomen that grew slightly.   So, I don't know if my onc. will keep me on it because of this one friggen lesion that isn't responding.    I don't have any hand or foot syndrome.   But, I was to stress, and perhaps ask Dr. Lenz if he goes on regorafinib does it affect any future drugs/clinical trials you may be interested in.   

  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Thank you!

    Thank you so much for all your great encourgement, experiences and guidance.  You are all priceless.  ((( hug)))

    We had a chance to talk to some scientist who work on chemo drugs, Avastin, etc...   and they think the Rogorafenib is a good do right now.  We are also getting a biopsy and sending it off for gentetic testing and some blood is being sent to Greece for chemo efficacy as well as naturopath stuff that might attack the cancer.  Truth is, this is a very scary place to be.  In addition, **** has an MRI on Tuesday as he has been having headaches (they do go away)  and back pain (it does go away and usually flares when he lays down).  Yup, both scary.

    All that said, we are leaving on a staycation in 2 hours to a beautiful hotel 1/2 hour away.  Cool   Someone is coming to care for our daughter and we are just going!  We decided yesterday.  ****'s birthday is next week and before the scan and Rego begins we want to relax, enjoy the ocean and have room service. 

    I will keep you updated.  Again, I thank everyone for their input.  We will check on Rego cancelling out clinical trials, thanks for the heads up on that.

    Much aloha,

    Kathleen

  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    Kathleen

    ..hugs not wanted to read about **** after coming back after a few weeks.

     

    Just sending you both hugs

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Is there any way they could be combined?

    Somebody over at the CC was talking about having several chemos combined (I think the end result was FOLFOXIRI).

    I have no idea what this would mean in the way of side effects.  Maybe it would be way too much.  But it seems like since there is a problem with chemos working only on certain tumors, and not others, that a combined approach might offer more possibilities.

    How long will it take to get the results from the tumor testing?  I'm hoping that will give you the answers you need, but I imagine you don't want to wait too long before getting tx going.

    Dang...poor ****.  I'm so sorry you both are going through this.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member

    Is there any way they could be combined?

    Somebody over at the CC was talking about having several chemos combined (I think the end result was FOLFOXIRI).

    I have no idea what this would mean in the way of side effects.  Maybe it would be way too much.  But it seems like since there is a problem with chemos working only on certain tumors, and not others, that a combined approach might offer more possibilities.

    How long will it take to get the results from the tumor testing?  I'm hoping that will give you the answers you need, but I imagine you don't want to wait too long before getting tx going.

    Dang...poor ****.  I'm so sorry you both are going through this.

    There's a combo called

    There's a combo called Folfirinox (oxiliplatinum, 5fu, irenotecan).