What A Difference A Day Makes! **UPDATE**

cbcardb12
cbcardb12 Member Posts: 84
edited March 2014 in Colorectal Cancer #1
So, to recap, my husband was diagnosed with stage 4 rectal cancer in March 2009. He has been on Folfiri with Avastin, Folfox & now Erbitux with irritincan(sp). His CEA # started at 647 & went down to 7.9. At the end of last year, it went back up to 25. In the meantime, we have looked at going to NY for the HAI pump, and just yesterday, we met with Dr. James York to discuss his eligibility for Sir Spheres (thanks Patti - ittapp). Anyway, that was a very positive meeting and things were looking fantastic. The cat scans from Feb 09 to Nov 09 showed significant shrinkage, and that was before he started Erbitux. So, we left the dr's appointment extremely excited & hopeful. So, my husband goes to chemo this morning, and his dr keeps walking by the room he is in without coming in. Which totally frustrates my husband! Finally he comes in and tells him that he needs to talk to my husband. Erbitux is not working! The CEA level has risen from 25 to the 300's. His liver enzyme numbers have gone from 148 to the 200's. They are doing another ct scan next week. He trying to get my husband in a clinical trial at Emory for the sister drug to Erbitux. CB (my hubby) asked if this would be a blind trial/would he definitely be getting the drug, and the dr. said yes. So, since Erbitux is not working, he didn't do chemo today and will rest up and start the new drug (have to get authorization from the insurance company) next week. How do we feel? Kind of disappointed, but still not afraid. Yet! I hate that he has gone through that whole horrible rash with no good results. But hey, as the dr. said yesterday, there will be good results & bad results, ups & downs. Ok, so this week is a downer! We'll be ok.


**UPDATE**
My husband got the ole "There's nothing more that I can do for you" speech today. After last week, the oncologist said that my husband needed to look for clinical trials, and that he thought he might do well on Perisofine(sp). After that talk, we set up an appointment at Georgia Cancer Specialists for tomorrow to explore other options. Today, the oncologists recommended that we look for clinical trials at Emory. Of course, his practice is part of Emory, so I understand, but we had a very bad experience there and are hesitant to go that route again, but will if that's what it takes. The onc said either Emory or Vandy or MSK. I have started researching requirements for clinicals and most require that you be off any treatment regimens for at least 28 days. CB is going into the 3rd week without treatment, so that is good, except the disease continues to progress with nothing to slow it down. His onc set up an appointment for next Wednesday just in case we can't find anything so that he can start on Xeloda & Vectibix, because of course the liver is getting worse. The word on Georgia Cancer Specialists is that they also do a lot of clinical trials, but his oncologist felt it was better to go to Emory instead of another practice. What a dilemma!

Carolyn

Comments

  • zenmonk
    zenmonk Member Posts: 198
    #2
    clinical trials
    I used the clinical trial matching service through the Armstong foundation. They match you up nationwide or regionally. I talked to them one day and the very next I had an email box full of clinical trials. Not only that but when I called I was terribly upset and the lady who works there spent alot of time with me on the phone and calmed me down. I will never forget how she calmed me down and lifted my fighting spirit that day. Its a good service. Prayers for you.
  • nudgie
    nudgie Member Posts: 1,478 Member
    #3
    I am sorry
    to hear that things are not going so well right now, but don't give up. There are many great cancer centers available such as:

    John Hopkins
    MD Anderson
    Mayo Clinic
    Sloan Kettering
    Cancer Centers of America

    Great websits as well:

    National Institute of Health
    Colon Cancer Alliance
    People Living with Cancer
    American Cancer Society
    National Cancer Coalition
  • cbcardb12
    cbcardb12 Member Posts: 84
    #4
    zenmonk said:

    clinical trials
    I used the clinical trial matching service through the Armstong foundation. They match you up nationwide or regionally. I talked to them one day and the very next I had an email box full of clinical trials. Not only that but when I called I was terribly upset and the lady who works there spent alot of time with me on the phone and calmed me down. I will never forget how she calmed me down and lifted my fighting spirit that day. Its a good service. Prayers for you.

    Thanks, I started at clinicaltrials.com website
    I looked up the Armstrong Foundation, but I will start on those today. Surprisingly, I'm very calm. I am employing my Project Management skills and trying to make sure I gather as much information as quickly as possible. Of course I worry that our window of opportunity is closing, but for some reason I have faith that we can do this. Thanks for the prayers and the good information.

    Carolyn
  • cbcardb12
    cbcardb12 Member Posts: 84
    #5
    nudgie said:

    I am sorry
    to hear that things are not going so well right now, but don't give up. There are many great cancer centers available such as:

    John Hopkins
    MD Anderson
    Mayo Clinic
    Sloan Kettering
    Cancer Centers of America

    Great websits as well:

    National Institute of Health
    Colon Cancer Alliance
    People Living with Cancer
    American Cancer Society
    National Cancer Coalition

    I am all over them!
    I really wish I could get me husband to read the posts from here. There is so much hope and encouragement here, and although he listens and gains inspiration from what I read to him, I think it would be better getting it firsthand.

    Thanks,

    Carolyn
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #6
    at that point too
    Hi Carolyn,

    Sorry to hear all the run around your husband has gotten and that the Erbitux didn't work for him. Having the kras mutation, Erbitux won't work for me either. I was shocked to discover after my own recent "bad" scan, that I've gotten to the point where "regular, FDA approved for colorectal cancer" treatments are no more- I've done them all already. I've got to do either a clinical trial or something considered experimental. I do not qualify for any current clinical trials within 500 miles (and yes, I'd consider going farther if neccessary, but I'm trying to find what I can a bit closer to home- I'm a busy mom of 3 kids and it would be horrible to have to go away. It'd be even more horrible to leave my kids motherless, so I'll do what I have to do!). BUT... I do think something is about to work out for me within the next week or so. I believe I should be getting insurance approval on Gemzar (gemcitabine) soon. I have also heard recently about perisofine & have heard that it has good prospects too. Doctors told me since it's FDA approved for some cancers, but not colon/colorectal cancer, insurance won't pay for it. However, another oncologist I've consulted with called me on Saturday to tell me to not worry, that we'll get this passed through insurance. He is writing a letter to the insurance about what I've already taken and failed on, how I don't currently qualify for any clinical trials, and that this drug had very good prospects on its phase I and phase II trials & that I need to take it. He's getting my other doctors involved to also sign the letter and he'll send them the study data about the drug. I was so grateful for this doctor's help! Still not just wanting to wait on the sidelines, however, I called the assigned case manager at my medical group Monday a.m. and shared this situation and how they should be receiving a letter and data from the doctor soon. She said it's on the FDA approved list for other cancers, so it shouldn't be too difficult to get it passed for my kind of cancer, given that I've "failed" on other treatments. I didn't hear anything yesterday, so I plan on following up with a call to my dr. today. I'm hopeful & I'll let you know how it turns out.
    My thoughts are that it might be best at this point for me (and maybe for your husband) to take a drug such as the Gemzar (with Xeloda) or Perifosine that is not a clinical trial. Clinical trials have the waiting period beforehand, as you mentioned, and they also do not allow you to take other supplements along with treatment because it would affect the outcome of their studies (something else influencing whether it works or not). I know of several supplements I'd like to take that I would not be able to take if I went on a clinical trial. Obviously, we do what we have to, but that is my concern at the moment.

    Best wishes and I'll be interested in hearing about how things go for you and your hubby.

    Take care,
    Lisa
  • cbcardb12
    cbcardb12 Member Posts: 84
    #7
    lisa42 said:

    at that point too
    Hi Carolyn,

    Sorry to hear all the run around your husband has gotten and that the Erbitux didn't work for him. Having the kras mutation, Erbitux won't work for me either. I was shocked to discover after my own recent "bad" scan, that I've gotten to the point where "regular, FDA approved for colorectal cancer" treatments are no more- I've done them all already. I've got to do either a clinical trial or something considered experimental. I do not qualify for any current clinical trials within 500 miles (and yes, I'd consider going farther if neccessary, but I'm trying to find what I can a bit closer to home- I'm a busy mom of 3 kids and it would be horrible to have to go away. It'd be even more horrible to leave my kids motherless, so I'll do what I have to do!). BUT... I do think something is about to work out for me within the next week or so. I believe I should be getting insurance approval on Gemzar (gemcitabine) soon. I have also heard recently about perisofine & have heard that it has good prospects too. Doctors told me since it's FDA approved for some cancers, but not colon/colorectal cancer, insurance won't pay for it. However, another oncologist I've consulted with called me on Saturday to tell me to not worry, that we'll get this passed through insurance. He is writing a letter to the insurance about what I've already taken and failed on, how I don't currently qualify for any clinical trials, and that this drug had very good prospects on its phase I and phase II trials & that I need to take it. He's getting my other doctors involved to also sign the letter and he'll send them the study data about the drug. I was so grateful for this doctor's help! Still not just wanting to wait on the sidelines, however, I called the assigned case manager at my medical group Monday a.m. and shared this situation and how they should be receiving a letter and data from the doctor soon. She said it's on the FDA approved list for other cancers, so it shouldn't be too difficult to get it passed for my kind of cancer, given that I've "failed" on other treatments. I didn't hear anything yesterday, so I plan on following up with a call to my dr. today. I'm hopeful & I'll let you know how it turns out.
    My thoughts are that it might be best at this point for me (and maybe for your husband) to take a drug such as the Gemzar (with Xeloda) or Perifosine that is not a clinical trial. Clinical trials have the waiting period beforehand, as you mentioned, and they also do not allow you to take other supplements along with treatment because it would affect the outcome of their studies (something else influencing whether it works or not). I know of several supplements I'd like to take that I would not be able to take if I went on a clinical trial. Obviously, we do what we have to, but that is my concern at the moment.

    Best wishes and I'll be interested in hearing about how things go for you and your hubby.

    Take care,
    Lisa

    Hi Lisa
    Thanks for the information. I started getting my questions together for the appointment tomorrow, and one of the questions was whether he should start on the Xeloda pills & something else with it. I saw where you mentioned Gemzar in an earlier post, and I have it on the list to ask about tomorrow. I also feel the way you do as far as going for the treatments vs. trying to get in a clinical trial. I'm interested in hearing what they say at the appointment tomorrow, and I'm apprehensive about starting a new regimen that doesn't work, but whose to say a clinical trial will work, and it could take a while to find one that he qualifies for that we can get to. Like you, it's difficult to travel. I am the only one working at this point, and let me tell you, I was not the main breadwinning in this family, so we are struggling to survive! Like others have mentioned, we probably will lose our house, we have 2 cars so that he can get back and forth to treatment and other drs. appointments while I'm working, so it has been a logistical nightmare. But hey, it could be a lot worse. We will just have to make it work. Thanks for the information.

    Carolyn

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