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USC visit and NYC plans - update at botton of first post

Kathleen808
Kathleen808 Member Posts: 2,342
edited November 2012 in Colorectal Cancer #1
Hi Friends,

We have been in So Cal for 4 days now and today **** had his appointment with Dr. Lenz at USC. Dr. Lenz was happy to see **** looking so good, 3 years and 10 months after diagnosis with 3c. He said that **** did amazingly well on the Folfori + Avastin for almost 2 years but that is was time to change the chemo. He recommended Irinotecan, Erbitux and (if insurance will pick it up) continue with Avastin. So, that means no more 5 FU. **** will be happy to see the pump go bye bye. Also, chemo will go back to every 2 weeks instead of every 3 weeks. I am happy to say that **** left the appointment with some hope that he can keep the cancer from spreading and hopes to see it beat back.

One of the things that he did recommend that I thought would be very helpful is that they are recommending probiotics 3 times a day to combat the diarrhea from the Irinotecan. He said that people are almost having no problems once they start on this. If you try it, let us know if it helps.

We were supposed to fly out tomorrow at 8am to NYC to go to Sloan. Our flight has been changed to Wednesday at 10am. We will know more tomorrow. ****'s appointment is on Thursday. It will be interesting to see if the docs come up with the same plan. Also, they are running some more genetics tests to see what works best with his tumor type. I'll let you know how it goes.

So, we are one more day in So Cal with our college daughter and my parents. Our other daughter and my sister-in-law had to evacuate our house 2 nights ago because of the tsunami alert for Hawaii. I am happy to say the tsunami did not materialize in any large way, just 1 foot waves.

Thanks for all your support as we try to find the next steps.

Aloha,
Kathleen

UPDATE: Hello dear friends, (10/31/12)

Here we sit in sunny Southern California and no we are not going to New York. Our flight was cancelled two days in a row and we cannot make it to ****'s appointment. I think what we are going to do is follow the plan that Dr. Lenz proposed and then scan in January and if things are not improving make it out to Sloan. So...... we are enjoying our time out here with our daughter and my parents. We are going to stay in So Cal until Sunday and watch our daughter's 2nd regatta. She is the coxswain on her school's crew team. We are at peace and feel that **** has a good plan. Thank you for all your love and support.

Aloha,
Kathleen

Comments

  • wolfen
    wolfen Member Posts: 1,324
    Kathleen
    Good to hear your update. I was thinking that ****'s Sloan appt. was today and no way could you get there. Glad you were able to change plans and the new appt. is still a go. I sure hope the probiotics work as I know when JBG was on Irinotecan, she had horrible stomach cramps most of the time. Hoping all goes well for you guys getting into New York and during the appt. Please keep us posted.

    Luv,

    Wolfen
  • taraHK
    taraHK Member Posts: 1,952
    Good luck!
    HI Kathleen,

    Good luck to you both on this next phase of the journey. Yes, it will be interesting to see how the plan/opinion from Sloan differs from that of Lenz/USC. As you know, I have seen Dr. Lenz on consultation too and really liked him. I never had very bad diarrhea on irinotecan (and hope **** won'd either!). Interesting -- I take a probiotic once a day (not specifcally for that -- more just general health of the gut). Just anecdotal but interesting....(May I ask what sort of dosage he recommended?)

    Glad the tsunami in Hawaii ended up not being serious!

    Love,
    Tara
  • k44454445
    k44454445 Member Posts: 494
    good luck
    & know i will pray for both of you. safe journey! and living here in indiana i want you to enjoy the good weather in hawaii for me!!!
    hugs
    judy
  • janderson1964
    janderson1964 Member Posts: 2,215
    I am glad to hear you have
    I am glad to hear you have some hope. I also know that the makers of Avastin are working on FDA approval for muliple lines of treatment. This would lead to insurance companies willing to cover the use of Avastin after second line treatment.
  • Sonia32
    Sonia32 Member Posts: 1,071
    Big hugs
    and good luck and prayers.
  • Lovekitties
    Lovekitties Member Posts: 3,364
    Dear Kathleen
    I am so glad that the news is so positive for ****. I hope that the news only gets better with the appointment at Sloan.

    I am very glad you all were not in NYC yet. I don't know where Sloan is in relation to where you plan to stay, but you might want to consider hiring a car service if you can afford it and can find one since mass transit and cab service will be difficult to come by given the effects from the storm.

    Thank you so very much for the update and prayers for your safe travels.

    Hugs,

    Marie who loves kitties
  • janie1
    janie1 Member Posts: 753

    Dear Kathleen
    I am so glad that the news is so positive for ****. I hope that the news only gets better with the appointment at Sloan.

    I am very glad you all were not in NYC yet. I don't know where Sloan is in relation to where you plan to stay, but you might want to consider hiring a car service if you can afford it and can find one since mass transit and cab service will be difficult to come by given the effects from the storm.

    Thank you so very much for the update and prayers for your safe travels.

    Hugs,

    Marie who loves kitties

    Hopeful
    Kathleen, i didnt realize **** was on Folfuri this whole time. That's great that now Erbitux can be added.
    Was he never on Folfox (oxaliplatin)?
    I thought Folfuri did include Irinotecan.

    Is USC doing the genetic tumor testing? Can they do that from old slides, or how does that work?
    Can you let us know if Sloan recommends tumor testing, and what their plan is?

    I managed well on Irinotecan. On my own i took a good quality probiotic from a naturopath. I took it a few times, dont really need it anymore as far as having GI difficulties..just dont have any, and maybe that is due to the probiotics in the beginning.
    Hope you are able to get around ny fairly easily this week.

    All the best to you.
  • abrub
    abrub Member Posts: 2,173 **
    A quick note re Sloan
    I've been getting messages from them about changes in scheduling because of Sandy. Please contact them, and reconfirm that ****'s appointments are as expected.

    NYC did get hit very hard by Sandy - check everything out first.

    Alice
  • cinreag
    cinreag Member Posts: 154
    k44454445 said:

    good luck
    & know i will pray for both of you. safe journey! and living here in indiana i want you to enjoy the good weather in hawaii for me!!!
    hugs
    judy

    Indiana
    Indiana is also my home.
    ~Cindy
  • cinreag
    cinreag Member Posts: 154
    Probiotics for diareah
    Hi Kathleen. I havent talked with you before. I certainly wish you and **** the best. I wonder if probiotics could help me. I still have lingering almost daily diarreah. I do believe it wouldnt hurt to try. Stay safe. Cindy
  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    Update
    Thank you for the update and it sounds like the doctors are on top of things. Glad that he is feeling well. Be safe in your travels and hope the appointment tomorrow goes well.

    Kim
  • lesvanb
    lesvanb Member Posts: 905
    Good to hear news of you both Kathleen
    Thanks so much for posting, and glad that Dr Lenz's visit was hopeful. NYC was hit hard by Sandy so I agree with double-checking. Though I'm not on chemo, I have good luck with probiotics. There are many out there and it's worth trying different kinds to find one that works best for you. I use Spectrabiotic right now. http://www.simplexityhealth.com/products/specsheets/spectra_spec.html Probiotics also help with immune system response.

    Good luck in NYC!

    Love to you both
    Leslie
  • pf78248
    pf78248 Member Posts: 209
    Best wishes for a successful trip
    Dear Kathleen,

    I rarely visit the board now that David has been gone a little over two years, but I am always so encouraged to learn that **** is doing well. I'm sorry he can't get off the chemo for good, but I'm sure between Dr. Lenz and the doctors at Sloan, you ill have a good plan.

    Please travel safely with all these storms and know that so many care deeply for you and your family. This board is so important to all of us touched by cancer.

    Hugs and Healing,
    Priscilla
  • Sundanceh
    Sundanceh Member Posts: 4,392
    pf78248 said:

    Best wishes for a successful trip
    Dear Kathleen,

    I rarely visit the board now that David has been gone a little over two years, but I am always so encouraged to learn that **** is doing well. I'm sorry he can't get off the chemo for good, but I'm sure between Dr. Lenz and the doctors at Sloan, you ill have a good plan.

    Please travel safely with all these storms and know that so many care deeply for you and your family. This board is so important to all of us touched by cancer.

    Hugs and Healing,
    Priscilla

    Hi Priscilla:)
    Now, there's a face I've been missin'...

    :)

    I can't believe it's been 2 years now...

    I couldn't resist running over to hug you...(((P)))

    Always so good to see you!

    -Craig
  • Sundanceh
    Sundanceh Member Posts: 4,392
    Sundanceh said:

    Hi Priscilla:)
    Now, there's a face I've been missin'...

    :)

    I can't believe it's been 2 years now...

    I couldn't resist running over to hug you...(((P)))

    Always so good to see you!

    -Craig

    Best of Luck, K & D!
    As always:)
  • herdizziness
    herdizziness Member Posts: 3,624
    Kathleen
    I wish I could have made it to SoCal to see you both.
    I'm sure if you are happy and NY wasn't to be, that it is what it is meant to be.
    I'm glad you made it over to the mainland and your check up and decision to go on this course, means it was meant to be as is.
    I'm so happy you get to spend extra time with your daughter, how special is that?
    So, am thrilled you got over hereto see your daughter,see Dr. Lenz and have a plan in place.
    Here's to you and **** and your continued success in the colon cancer world.
    Wnter Marie