Husband has run out of options ???

Mrs. Marv
Mrs. Marv Member Posts: 2
edited March 2014 in Colorectal Cancer #1
Hi, this is really very new to me and the first time I actually joined a discussion board. My husband was diagnosed with colon cancer June 2003. He had surgery and some prophylactic chemo. Everything looked good for a year. Since the fall of 2004 he has been receiving some type of chemotherapy and things progressed very slowly. We thank God for that. His cancer metastisized into his liver and lungs and the growth in tumor size was so very slow.. until just within the last 4-6 weeks. The tumors in the liver grew and one is quite large. It also progressed into the lymph areas around the liver. We were told yesterday that there are no futher options and we are probably looking at only months now.

Through the years he has been on 5FU, Avastin, Oxalyplatin, Xeloda, Erbitux, Vectibex and combinations of these. There was another one that I cannot remember that began with an "R", I believe. You begin to forget : ) He could no longer tolerate the Avastin because on top of everything else, he developed congestive heart failure.

He will be going back on the 5 FU pump with the hopes of slowing the progression down but we were told that very seldom do patients respond once they reach this point.

I would like to know, is there anything else anyone out there has tried? He is only 53, we have two young grandchildren and we are just not ready to give up.

Thanks everyone.

Mrs. M

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
    Mrs M.
    The best advice I can give you is to go out and get him a second (or third) opinion. Many of us had similar diagnosis or spread of mets and and we are here many tears after the fact. He's 53, way too young to not look at other options.

    I just reread your post and all I can offer is get him another opinion. He can be helped.

    -phil
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    Hi Mrs. Marv
    Hi Mrs. Marv

    I was just on my bed but decided to check for any last minute updates and I read your story. I am so sorry to hear about this. I am almost speechless, quite a shock.

    I'm into my 6th year and have done many of the chemo drugs plus the Avastin you mention as wll as the 5fu pump and the pill form of that, Xeloda. I started as colorectal, mets to the liver, and now to the pleura of lung, so I am saddened to hear about this.

    I am just going to ask a couple of questions to see if myself or anybody else on the board can help you.

    I'm assuming you have been with this oncologist for a long time?

    Have you considered getting a 2nd opinion from another facility or hospital? I've done that recently and the answers were different in certain areas? It's certainly worth doing just to see that everybody is in agreement with the protocol being administred.

    Has surgery been ruled out completely?

    I had a couple of different things that might be an option for your husband. One is called RFA, Radio Frequency Ablation, where a multi prong device is inserted into the tumor and heated through strong radio waves that literally fry the tumor or tumors.

    The other option either as a sole option or as a follow up to RFA is called CyberKnife. Radioactive seed markers are placed in the liver in and around the tumor. Surgeon and radiation oncologist draw up the game plan and feed those coordinates into a computer software program and CyberKnife, which is radio surgery, picks up on the seed markers, follows the coordinates input and using laser like precision, sends highly concentrated doses of radiation over an extended period of up to 2 hours over 3 to 5 treatments. It literally surgically cuts away at the tumor.

    These might be of benefit. I've also heard people talking about various clinical trials. You might try and type that into the Search field of the Colorectal board and see some info on those.

    I'm going to be praying for you and your husband and hoping there is another solution. It's hard to hear there is nothing else - it is everybody's fear.

    Again, I'm so sorry that you are in this. Welcome to the board, the rest of the gang will be in behind me to offer their stories and testimony and give you their insight as well.

    Please let us know what is going on - we will try and help you any way that we can. These are good people here, the best.

    My prayers are with you
    -Craig
  • Mrs. Marv
    Mrs. Marv Member Posts: 2
    #4
    Sundanceh said:

    Hi Mrs. Marv
    Hi Mrs. Marv

    I was just on my bed but decided to check for any last minute updates and I read your story. I am so sorry to hear about this. I am almost speechless, quite a shock.

    I'm into my 6th year and have done many of the chemo drugs plus the Avastin you mention as wll as the 5fu pump and the pill form of that, Xeloda. I started as colorectal, mets to the liver, and now to the pleura of lung, so I am saddened to hear about this.

    I am just going to ask a couple of questions to see if myself or anybody else on the board can help you.

    I'm assuming you have been with this oncologist for a long time?

    Have you considered getting a 2nd opinion from another facility or hospital? I've done that recently and the answers were different in certain areas? It's certainly worth doing just to see that everybody is in agreement with the protocol being administred.

    Has surgery been ruled out completely?

    I had a couple of different things that might be an option for your husband. One is called RFA, Radio Frequency Ablation, where a multi prong device is inserted into the tumor and heated through strong radio waves that literally fry the tumor or tumors.

    The other option either as a sole option or as a follow up to RFA is called CyberKnife. Radioactive seed markers are placed in the liver in and around the tumor. Surgeon and radiation oncologist draw up the game plan and feed those coordinates into a computer software program and CyberKnife, which is radio surgery, picks up on the seed markers, follows the coordinates input and using laser like precision, sends highly concentrated doses of radiation over an extended period of up to 2 hours over 3 to 5 treatments. It literally surgically cuts away at the tumor.

    These might be of benefit. I've also heard people talking about various clinical trials. You might try and type that into the Search field of the Colorectal board and see some info on those.

    I'm going to be praying for you and your husband and hoping there is another solution. It's hard to hear there is nothing else - it is everybody's fear.

    Again, I'm so sorry that you are in this. Welcome to the board, the rest of the gang will be in behind me to offer their stories and testimony and give you their insight as well.

    Please let us know what is going on - we will try and help you any way that we can. These are good people here, the best.

    My prayers are with you
    -Craig

    Thank you both. Yes, we
    Thank you both. Yes, we have been to the Mayo Clinic in Rochester MN on a number of occasions and our oncologist here at home is in contact with the oncologist in Mayo... They both have agreed that there are no other treatments to try. I am not aware of the radiation therapy mentioned and will check into this ! I do know that any surgery is out of the question especially due to other health conditions - such as the congestive heart failure.

    Thanks again for the support !

    Mrs. M
  • snommintj
    snommintj Member Posts: 601
    #5
    Mrs. Marv said:

    Thank you both. Yes, we
    Thank you both. Yes, we have been to the Mayo Clinic in Rochester MN on a number of occasions and our oncologist here at home is in contact with the oncologist in Mayo... They both have agreed that there are no other treatments to try. I am not aware of the radiation therapy mentioned and will check into this ! I do know that any surgery is out of the question especially due to other health conditions - such as the congestive heart failure.

    Thanks again for the support !

    Mrs. M

    clinical trials?
    There are some fantastic clinical trials that have just started enrolling in the last month or so. If he has exhausted all conventional therapy he should give them a shot. I think the most intriguing one I've seen for end stage patients is for Olaparib. I will be entering the fostamatinib trial in a few weeks. Now, if this doesn't work, there are some new things out there that will definitely help extend his life. There is an artificial liver machine that is essentially dialysis for the liver. The are also beginning living donor liver transplants in september.
  • dash4
    dash4 Member Posts: 303 Member
    #6
    liver website..
    I am so sorry to hear of your husband's story.....I agree with all the posts to your question. My husband had a liver ablation and a resection in 12/04 at University of Pittsburgh Medical Center in PA by Dr. David Geller. His liver surgeon is world known and has a great website that gives all the latest options for the liver. It is a great source just to understand what to ask your doctors about too. It is http://www.upmc.com/Services/liver-cancer-center

    Keeping you and your husband in my prayers,
    Dash
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    #7
    dash4 said:

    liver website..
    I am so sorry to hear of your husband's story.....I agree with all the posts to your question. My husband had a liver ablation and a resection in 12/04 at University of Pittsburgh Medical Center in PA by Dr. David Geller. His liver surgeon is world known and has a great website that gives all the latest options for the liver. It is a great source just to understand what to ask your doctors about too. It is http://www.upmc.com/Services/liver-cancer-center

    Keeping you and your husband in my prayers,
    Dash

    I am so sorry
    You know that they said they same thing to my husband that his tumors had grown in a two week period and there was nothing more that can be done and we had months too, and we knew that all the hope we had was gone in a second of hearing the dr say (there is nothing more Ect).So i wish you strength and my prayers are going out to you and your husband But i would still try a second opinion ,for angel everyone said the same thing the surgeon the oncologist and the attending dr that we had months and we had 3 months i wished it was more but thats how it went for us and i am thankful for that. My husband was 53 too. sorry again

    michelle

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