CT Scan Results from last week...not so hot

katefm
katefm Member Posts: 112 Member
edited March 2014 in Colorectal Cancer #1
Hi Semis-

I didn't post our scan results from last Monday because Jim was in Mexico and he just got back last night. Much as I was dying to talk about it (and needed the support), I thought it would be nice if he actually heard it from me first...not by reading it on our blog or on the CSN board!

Anyway, all of Jim's tumors have grown - there's about a 10% growth rate. I was devestated when I heard, but I am choosing to focus on the fact that there's no brand new growth, and his CEA level is cut in 1/2 from dx. (159.1 down to 65!)

We met with our doctor today and he recommended that we stay the course for a bit longer. He said that some people have inflammation in their tumors and then they reduce in size considerably. I am hopeful and skeptical. I don't want to hang my hat on the CEA and the hope that they'll shrink, but I'm not an oncologist. When I expressed my concerns at staying the course with Avastin/5-FU, the doctor agreed to set Jim up with another scan in a month to make sure that things are going in the right direction.

We are going to NYC next week to visit Dr. Kemeny and get her take on the whole thing.

Another disconcerting note: today our oncologist said that he would recommend for second line treatment is VEXCTIBIX - (ARGH! See Emily's previous post titled "FDA approves new drug INFO" on 2/12) I almost passed out. I told him why I didn't like the idea, but right now that's not our focus, since we're staying the course on Avastin/5-FU.

I know that many of you have been to second line drugs...but WHEN? Am I unrealistic to expect the onc. to take Jim off the first line chemo this early? (2nd cycle, 2nd scan...started in late October.) Should I have put up a stink and demanded 2nd line and asked for Erbitux? Today was the first time I've ever cried in the doctor's office - I'm petrified that we'll get to a "point of no return" - and then second line chemo won't be effective. They tried to reassure me, and I do realize that this isn't an exact science. The unknown is a killer.

I do feel as though we have a 2nd opinion from NY in our back pocket - it's something to fall back on. I'm hoping that they'll tell us our local doc is on the right track. But what if he's not? (But what if he is?! Positive, positive, positive...)

I'm so disappointed. And hopeful. And on a rollercoaster of emotions. I wanted SOME shrinkage - not a lot, but some would have been nice. And I was just so certain that we'd hear positive news that part of what hurts is the fact that it wasn't the best news. I never once imagined that it wouldn't be great news.

Words of advice? Sorry I've written so much. I've been saving this up for an ENTIRE WEEK!

On a lighter note, Jim is getting his pictures from Mexico developed right now so I'll post some of them to the Gallery later tonight or this week!

Thanks for your support, semi-colons. It means so much to me. Your positive stories fuel my soul.

Cheers,
Kate

Comments

  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #2
    Hi Kate: I know how you two feel. However, this just means that you need to find something that works. I'm already on a second line treatment of FOLFIRI and Avastin. My first line of treatment was Oxaliplatin/Xeloda/Avastin. There has been a slight shrinkage and stability, but no new growth. I'm just really surprised that Vectibix would be your onc's choice of second line treatment. Why not try FOLFOX and Avastin first? Or Erbitux for that matter? I would definitely get a second opinion. Just remember, at the end of the day, you need to make sure that you are satisfied with the treatment Jim is receiving and that it is the one that will help him beat this beast. The fact that the CEA is down is a good sign, you just need to find a course of treatment that will shrink or stabilize the tumours.

    There is a website by the Colorectal Cancer Coalition that sets out the different treatments and when they should be offered. I hope it helps. I have found it useful. Monica http://www.fightcolorectalcancer.org/TreatmentBookMar05.pdf
  • katefm
    katefm Member Posts: 112 Member
    #3
    Monicaemilia said:

    Hi Kate: I know how you two feel. However, this just means that you need to find something that works. I'm already on a second line treatment of FOLFIRI and Avastin. My first line of treatment was Oxaliplatin/Xeloda/Avastin. There has been a slight shrinkage and stability, but no new growth. I'm just really surprised that Vectibix would be your onc's choice of second line treatment. Why not try FOLFOX and Avastin first? Or Erbitux for that matter? I would definitely get a second opinion. Just remember, at the end of the day, you need to make sure that you are satisfied with the treatment Jim is receiving and that it is the one that will help him beat this beast. The fact that the CEA is down is a good sign, you just need to find a course of treatment that will shrink or stabilize the tumours.

    There is a website by the Colorectal Cancer Coalition that sets out the different treatments and when they should be offered. I hope it helps. I have found it useful. Monica http://www.fightcolorectalcancer.org/TreatmentBookMar05.pdf

    Hi Monica-

    Thanks for responding. Oopsies - I think I explained his current regimen wrong. He's on FOLFOX, Avastin, Oxaliplatin, and 5-FU. I think the 5-FU has the Oxaliplatin in it, right? I get them all so confused that sometimes I think FOLFOX is in the 5-FU. It's dizzying!

    Thanks for the website - I'll go check it out now.

    Kate
  • spongebob
    spongebob Member Posts: 2,565 Member
    #4
    Kate -

    Good tosee you focusing on the positive and reaching out for second opinions and info from others.

    Keeping you and Jim in my prayers - looking forward to seeing some pix of warm and sunny Mexico!

    Cheers

    - SpongeBob
  • vinny3
    vinny3 Member Posts: 928 Member
    #5
    katefm said:

    Hi Monica-

    Thanks for responding. Oopsies - I think I explained his current regimen wrong. He's on FOLFOX, Avastin, Oxaliplatin, and 5-FU. I think the 5-FU has the Oxaliplatin in it, right? I get them all so confused that sometimes I think FOLFOX is in the 5-FU. It's dizzying!

    Thanks for the website - I'll go check it out now.

    Kate

    Hi Kate,
    Just to clarify for you the FOLFOX has 3 drugs in the regimen: 5-FU, Oxaliplatin, and Leucovorin. I would be encouraged by the drop in the CEA. I'm not sure how accurate they can be when they say there is a 10% increase in size. These spots are pretty small and there are magnification and technical factors in the production of the films. A 10% change could just be a millimeter and I'm not sure how accurately they can tell that. Be sure to ask when you go to NYC.

    ****
  • nanuk
    nanuk Member Posts: 1,358 Member
    #6
    I think you have a positive trend; 159 to 65 is a lot, and possibly the tumors just haven't had a chance to catch up! If possible, take someone(friend, expert, etc.) along for your 2nd opinion visit..just an objective observer who can hear what you don't.. maybe just a tape recorder to review what was said. Often I come out of Dr. Visits more confused than when i went in; emotions can affect hearing.
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #7
    Hi Kate and Jim,

    Like the others said, it might just be the tumors have not caught up to the treatment. It is a little worrisome that the onc is citing using the Vexctibix after what Emily said. Do what you and Jim are most comfortable with. It is good that you are going for a second opinion. If you are uncomfortable with what is being given, get more information until you and Jim are comfortable. I just wanted to say HUGS and keeping you and Jim in my prayers.

    Lisa F.
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #8
    Hi Kate. Keep thinking positive. My hubby newly diagnosed stage 4 with liver mets and we haven't started treatment yet but will be soon. I may also make appt with nancy k for evaluation as a second opinion , a little ways down the road as I"ve read a lot about her , but she is "out of network " for us so I need prior approval etc and we are going to see where the current treatment plan leads us first. I'm holding that in my back pocket too, so I know what you mean. Will keep you both in my prayers. Keep us posted.
  • oneagleswings
    oneagleswings Member Posts: 425 Member
    #9
    Hi kate:
    I know exactly what you are going through..my husband started first line therapy in November/05 for mega mets to liver and one to lung..after 6 months of "variable response that showed increased metastatic load he was changed to second line in May/06 (6 months later)...by Aug/06 the second line had produced significant shrinkage in both size and number of mets..we elected to not have another cat for 6 months so will hear results this week...we have heard that sometimes it can take up to 4th/5th line for great results as the cancer cells can mutate so what doesn't work the first time will work the third time..I know it is scary..but try not to be discouraged..and don't forget that different positioning on the table can put the CT out by at least 10% percent meaning that an apparent increase could actually be "stable disease"...email me if you'd like...it would be great to chat
    Bev
  • jerryberry66
    jerryberry66 Member Posts: 3
    #10
    I was wondering if we could chat sometime. It seems we have a lot in common. I am recurrent colon mets to both lungs liver and two places in pelvis. My e mail is sfagan@nycap.rr.com Thank-You in advance. Jerry from New York.

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