Saw Dr. Lenz

Lilmiss82
Lilmiss82 Member Posts: 257
He is a wonderful doctor!!! So animated and very informative. He had me laughing so hard, best appointment I've ever had with a doctor. Anyways, after reviewing my records he had me pointed in a very different direction. He recommended that I get a biopsy on my lung nodules, he is not ruling out that it's not cancer but wants to be 100% sure. His reason for questioning is that lungs nodles typically do not respond to 5-fu and since I have shrinkage it could be something else.My Cea has also remained in the "normal range" which I know some people CEA means very little but with me rises with cancer growing inside me. Also, I have had tons of hair loss while on just 5-fu more so then when on FOLFOX and extreme red hand and the skin peeling off. He suggested that I stop the bolus and I have no problem with that. My oncologist agrees that the bolus has little to no effect so this past tuesday and forward no more bolus as it is becoming to toxic. Finally, once I have the lungs nodules tested depending on results I may change the chemo. If confirmed mets he wants me to switch to FOLFIRI. I'm scared to switch but he wants this treated aggresive. Stated that I was to young to be on palliative care and quite frankly I agree. So please with no sugar coating please tell me what you think especially in regards to CPT-11. I've heard horror stories, I also fear that since my nodules are so small that a biopsy may not be possible the largest one I have is 4mm??? Again thanks in advance and think of you guys daily:)

Comments

  • Buckwirth
    Buckwirth Member Posts: 1,258
    CPT-11
    Also known as Irinotecan, is far less toxic than Oxaliplatin, and is the primary difference between Folfox and Folfiri.

    This is not to say it is non-toxic, just that your body can stand many more treatments of Irinotecan than it can of Oxy, thus Irinotecan is used as a combined therapy for things like Erbitux, which you can be on for many years.

    Both Folfox and Folfiri are effective as front-line treatments for Stage IV, and as adjuvant for Stage III.
  • Lilmiss82
    Lilmiss82 Member Posts: 257
    Buckwirth said:

    CPT-11
    Also known as Irinotecan, is far less toxic than Oxaliplatin, and is the primary difference between Folfox and Folfiri.

    This is not to say it is non-toxic, just that your body can stand many more treatments of Irinotecan than it can of Oxy, thus Irinotecan is used as a combined therapy for things like Erbitux, which you can be on for many years.

    Both Folfox and Folfiri are effective as front-line treatments for Stage IV, and as adjuvant for Stage III.

    Thanks Buck
    Can't do the Erbitux as I am a Kras mutant, but thanks for your response:)
  • taraHK
    taraHK Member Posts: 1,952
    agree
    I agree with Buck -- I found CPT-11 much easier to tolerate than oxaliplatin. I did have hair loss with CPT-11. And you have to watch out for diarrhea -- I was able to control with Immodium on the few occasions it occurred (everyone varies with their reactions and side effects of course). I actually did Xeliri (xeloda plus CPT-11), not FOLFIRI.

    I've seen Dr. Lenz myself, for one consult -- he's super.

    My attempted biopsies for lung mets were unsuccessful but they were in very awkward places -- I wish you luck with the biopsies. It certainly should be possible (will it be done CT-guided?). I did have one nodule which everyone thought was malignant -- and I was all geared up for surgery. Did a final CT and no-one could find the darn thing -- it has disappeared. Hope you have a similar experience! (Miracles do happen??).

    I am on FOLFOXFIRI now -- it is going OK. It's good to know there are other options out there, isn't it?

    Good luck!

    Tara
  • geotina
    geotina Member Posts: 2,111
    CPT-11
    Ok, you said no sugar coating so I'm going to give your George's experience. You, like us, have been at this for a while so here goes:

    Hair loss - George lost 100% of hair, head, face, legs, arms, eyelashes, everything. Now this may not happen but it did happen to George.

    Diarrhea: It was really bad. There was a period where there was absolutely no control at all, could not even sip water. He ended up in the hospital for 4 days getting fluids, potassium and a unit of blood a few weeks ago. We now have it mostly under control and in the last 2 weeks he put on 4 pounds. Appetite is back. Stock up on Immodium AD, bananas, rice, applesauce, toast and Gatorade for fluid and electrolytes. Again, George's experience was worse than most. We were warned by the hospital no dairy, easy on the greens like spinach, leafy stuff and salads which we have done.

    Gas: Well you will be able to do the 30 second fart but heck, at least its not diarrhea.

    Now the good news, it is really doing its job. His scans last week showed mets shrinking and under control and he is finally starting to feel pretty good although still quite fatigued some days. George said since it is doing its job he can put up with the side effects.

    This chemo kicked his butt pretty good, he breezed through Folfox with very minimal complaints. His is on just CPT-11 and Avastin.

    We made the mistake of letting the diarrhea get out of control before seeking more attention for it. I think it was a guy thing. He told the chemo nurse he was fine and she looked at me shaking my head no.

    Best wishes and good luck with this chemo, it does work. Craig was also recently on this or may still be and it kicked him pretty good. Send him a pm for his experience.


    Hugs - Tina
  • sasjourney
    sasjourney Member Posts: 395
    My experience
    Hi,

    Glad your appt with Dr. Lenz went well. He's the best!!! I have completed 10 rounds of folfiri and erbitux and think it is much more tolerable than folfox. I have lost some hair, but have not had to wear the wig I purchased. I am not as tired as I was on Folfox. About 5 days after chemo is done I have an evening of diarrhea controlled with immodium. The following week I feel pretty good. I haven't had any other side effects. Saying prayers for this treatment to be tolerable for you and that it gets rid of those nodules.

    Hugs,
    Sara
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Dr Lenz
    Hi,
    **** has seen Dr. Lenz a number of times the past 2.5 years. He has **** on Folfori + Avastin with no bolus push. He took out the bolus push when he saw **** in March. **** says he feels better during chemo without it. **** has been on Folfori + Avastin since January 2011 with the reoccurance in the lungs and lymph nodes. It is doing it's job with everything smaller or resolving (last scan was in April). He will get another scan in August. He feels pretty good except for 4 days (3 on chemo). Yes diarrhea is an issue, stay up on the Immodium. **** has had hair loss but not total. Even with feeling sick for a few days on chemo he feels better than he did when the cancer was more active in December 2010. He said he knew it was back.


    Best to you.

    Aloha,
    Kathleen
  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    Dr Lenz
    Hi,
    **** has seen Dr. Lenz a number of times the past 2.5 years. He has **** on Folfori + Avastin with no bolus push. He took out the bolus push when he saw **** in March. **** says he feels better during chemo without it. **** has been on Folfori + Avastin since January 2011 with the reoccurance in the lungs and lymph nodes. It is doing it's job with everything smaller or resolving (last scan was in April). He will get another scan in August. He feels pretty good except for 4 days (3 on chemo). Yes diarrhea is an issue, stay up on the Immodium. **** has had hair loss but not total. Even with feeling sick for a few days on chemo he feels better than he did when the cancer was more active in December 2010. He said he knew it was back.


    Best to you.

    Aloha,
    Kathleen

    Hey there, I'm on Folfiri,
    Hey there, I'm on Folfiri, get infusion every two weeks, with the take home bottle. So, far no major side effects, been doing this since Feb.. Seem to be tired on disconnect day, but still manage to get to office that day. Have runs, but have had that since colon resection, so it's no different than the usual which is managed by no name immodium product. I take 4 in the morning, and that controls it completely. You should be fine on it. I've been in the sun a bit and haven't had any of the sun sensitivity yet.