Update and thoughts

shrevebud
shrevebud Member Posts: 105
edited March 2014 in Colorectal Cancer #1
Hello All:

I've haven't posted in awhile because I have been in ths hospital for a week with Pleurisy plus I have been feeling bad before and after that. If you read this Craig, thanks for replying to my voice-mail messages over the Thanksgiving holiday. I will try you again, probably this weekend, like on Sunday - mid-day. I saw my oncologist first of this week. I had a PET scan today. He was on vacaation but just happened to be at the clinic before he leaves for a conference. He said that he and the nurse practitoner had been looking at my case and that I might be at the end of treatment options, beccause I have been on all the regimens for chemotherapy for CRC cancer like I have. Anyway this was upsetting and I made an appointment to see him Monday to get the results and discuss further, etc. We've looked at clinical trials, etc. and there is nothing I qualify for out there at this time. We are going to continue to look. I mentioned the implantable pump a couple of months ago but we have not discussed that further. Maybe also talk about MD Andersoon since I'm not that far from them (Houston). If anyone has ideas that I can bring up next week I'd appreciate hearing those from you before Monday. I'm probably going to be looking at going on disability next year so I would like to hear your thoughts on this topic also. Well all, I am going to close for now. Take care everyone hope to hear from you. Roy

Comments

  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #2
    Sorry to hear this Roy
    Sorry to hear you've been in the hospital. I had pleurisy with my pneumonia when I was pregnant with my third child. No fun.

    I just got out of the hospital myself Monday night after spending the weekend there with a blood clot in my lung - no fun. I can relate.

    I don't have my PET until Dec 15, so I still don't know if I am stage III or IV. I'm on my first round of treatment, so I'm not a lot of help with options, sorry.

    I do hope you hear of options that will work for you. Going to MD Anderson or Sloan Kettering are both brought up a lot for people looking for more after going through standard treatments.

    If you are stage IV cancer, in most cases I don't think they give you any trouble filing for SS.

    Hoping for new alternatives for you, and days of feeling better. Please keep us updated when you can.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #3
    Kathryn_in_MN said:

    Sorry to hear this Roy
    Sorry to hear you've been in the hospital. I had pleurisy with my pneumonia when I was pregnant with my third child. No fun.

    I just got out of the hospital myself Monday night after spending the weekend there with a blood clot in my lung - no fun. I can relate.

    I don't have my PET until Dec 15, so I still don't know if I am stage III or IV. I'm on my first round of treatment, so I'm not a lot of help with options, sorry.

    I do hope you hear of options that will work for you. Going to MD Anderson or Sloan Kettering are both brought up a lot for people looking for more after going through standard treatments.

    If you are stage IV cancer, in most cases I don't think they give you any trouble filing for SS.

    Hoping for new alternatives for you, and days of feeling better. Please keep us updated when you can.

    Roy.........................
    Talk with Lisa42, about her trip to Nashville to see Dr Cantrell and starting Lovastin and Interferon as an alternative out of the norm treatment regimen that has given him his life back. I am sure that Lisa42 will inform you of the details...Never ever give in...

    Your buddy....Buzzard
  • sfmarie
    sfmarie Member Posts: 602
    #4
    Roy
    Your post just breaks my heart. I certainly would talk to MD Anderson and see what they have to say. I don't believe in people saying you have run out of options. I would think there is ONE clinical trial out there that you would qualify for. What about the Jay Monihan Foundation? Perhaps if you contacted them they could assist you in researching options. My sister was told to look for clinical trials, then they had a 180 turn around after her PET came back and much of the cancer was gone. She is still fighting this beast and refuses to give up hope. She is getting another opinion at Sloan, and we live in CA! I know you would instantly qualify for disability. It is just a matter of your doc filling out the paperwork. You are in my prayers and don't give up! I hope Lisa42 posts regarding her Dr. Cantrell visit. I know John may post too, he was also told he was out of options. Blessings, Marie
  • Shayenne
    Shayenne Member Posts: 2,342
    #5
    sfmarie said:

    Roy
    Your post just breaks my heart. I certainly would talk to MD Anderson and see what they have to say. I don't believe in people saying you have run out of options. I would think there is ONE clinical trial out there that you would qualify for. What about the Jay Monihan Foundation? Perhaps if you contacted them they could assist you in researching options. My sister was told to look for clinical trials, then they had a 180 turn around after her PET came back and much of the cancer was gone. She is still fighting this beast and refuses to give up hope. She is getting another opinion at Sloan, and we live in CA! I know you would instantly qualify for disability. It is just a matter of your doc filling out the paperwork. You are in my prayers and don't give up! I hope Lisa42 posts regarding her Dr. Cantrell visit. I know John may post too, he was also told he was out of options. Blessings, Marie

    Keep Looking!
    Heyas hun, don't despair, my onc said there is sooo much out there to try, that even what I'm on, if it doesn't work, there is always something else, keep looking, and I agree with the others, talk to Lisa, and go get another opinion. I may be traveling next year for my second and third opinions, once I can afford it, and hopefully they can help me as well. I am glad you are out of the hospital, I hope you have a speedy recovery, and get out looking for those other options, you are in my prayers!

    Hugsss!
    ~Donna
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #6
    another possible option
    Hi Roy,

    I'm sorry to hear your news. I, too, just recently "failed" on the last approved treatment for colon cancer. I looked into clinical trials, but instead have just started treatment with Dr. Cantrell of Neoplas Innovation in Nashville, TN. Prior to this, I had never even considered going farther away than about an hour's drive from home (I live in north San Diego county, CA). I made the trip to Tennessee last week & am glad that I did, and am starting on a treatment that seems to be very promising. I don't know if you've already read any of my posts on this topic here or not. If not, check out the website www.neoplas.org
    or feel free to PM me for more information. I'm excited about this treatment!

    Best wishes,
    Lisa (lisa42)
  • Janet3
    Janet3 Member Posts: 59
    #7
    Never give up hope!
    I would highly recommend M D Anderson. My mom was diagnosed here in San Antonio 30 June 2009 with Stage IV signet cell adenocarcinomatosis. Dr said this was very rare and spread extremely fast, said she was not a surgical candidate. He said she wouldn't live til the end of Sept 2009. He was very blunt and honestly, just an **** throughout the entire discussion, which by the way, was one sided. He did all the talking, said we didn't really need to ask questions as there was nothing to do except wait. Huh! Having never experienced cancer in our family we were a little confused. We did a little research, found a doc at M D Anderson who specializes in her type of colon cancer. His name is Renato Lenzi MD. He is wonderful! At our first meeting, he stated that having seen all the information he would feel very comfortable with assuring her that he fully expected her to survive more than 6 years if she would agree to do the 6 months of chemo he recommended. Naturally, we liked him better! Everything about M D Anderson is great and so encouraging. After 3 cycles of chemo, her tumors were 50% reduced!! She will finish chemo in January 2010 and he'll scan her to look at the tumors. My point is that it's important to have doctors who are encouraging you. M D Anderson is all about encouragement and research. They will find something for you. They have lots of trials going on all the time. Contact the GI Clinic by telephone or online. You will remain in my daily thoughts and prayers. Don't ever give up your hope.
    Janet
  • geotina
    geotina Member Posts: 2,111 Member
    #8
    Dear Roy
    I'm sorry that you heard such discouraging news. I remember when I came on this board you were one of the first to say welcome. Maybe this oncologist is saying he can offer nothing more but that doesn't mean that someone else doesn't have a bigger bag of tricks. You mentioned the implantable pump, Sloan in New York offers this. I have been following a caring bridge side where the patient (a doctor in his 30's) just went from California to New York Sloan for the pump. I think others on the board also went to Sloan for the pump. I don't know about Anderson but if it is possible I would surely give them a call they are suppose to be the best. Please keep us advised on how things are going and what you come up with. I'm doing some research now on what to do next if George's chemo stops working. I want to be prepared if that happens. Wising you the best, take care - Tina
  • thready
    thready Member Posts: 474
    #9
    Options,
    Roy, there is fellow "snommintj" that has posted about having his tumors or tissues tested for what type of chemo might help him. He did that through Carus Diagnositics.
    I know that UTSW in Dallas has a clinic to do this. It might be something to look into.
    I am including the link so you might find a clinic closer to you. And the sight gives more information.

    http://www.carisdx.com/wp/

    Take care, and please don't stop
    Jan

Discussion Boards