back where I was two months ago

optimist
optimist Member Posts: 51
edited March 2014 in Colorectal Cancer #1
Two months ago, I was taking Erbitux and Camptosar and my CEA increased to 49. My old onc freaked and said that there was nothing more she could do for me. I shouldn't take any more tests, but just hang out and continue with weekly chemo. Eventually my CEA went to 18, but my liver tumors had increased in size and number on my scans.

I have since switched to a new onc. I am now on Xeloda and oxaliplatin. I have not had an easy time with oxaliplatin, having two allergic reactions the two times that I have taken it. Now, my CEA is 90.

My new onc handled the situation much better. He said that he doesn't know what to make of the increase of CEA. It suggests tumor growth, however tumor necrosis can cause it to rise, too. So, it may not necessarily be a bad sign. He can't conclude anything at this point, but he said it woke him up and he is paying attention to it. He wants me to repeat it in a week and take scans in ten days.

He feels that if it is determined that the Xeloda and Oxali have not been helping me, he would stop it. He feels in that case the hepatic pump would be the way to go. Originally, he said systemic therapy would be best for me because I also have nodes in my peritoneum. He feels that the hepatic pump would be the second choice, but could also help me.

It's amazing to me how the two doctors reacted to the situation. I feel so disappointed in myself relying on the first doctor for a year and a half assuming that she would help me through my whole disease, only to find out that she would be useless when things got tough.

I am hoping that the hepatic pump would have less side effects since the chemo is given directly to the liver. I also hope that it will get me off of chemo a bit. I am just sick and tired of being sick and tired. I feel that the chemo has continuously assaulted my body with no relief.

Does anyone know about the hepatic pump?

Thanks for listening.

Comments

  • CAMaura
    CAMaura Member Posts: 719 Member
    #2
    I am so sorry for your frustration. I do not have the same experiences going on, but here are my thoughts. I would call in some other opinions so that you do not have to rely on one person. Have some people you respect in agreement. How about calling in you gastroenterologist? They are liver specialists and do know about CEA and how a liver functions and reacts. How about calling in a radiologist and having your scans read and discussed with you there - or with another or all of the docs. Do you respect your surgeon? Call him/her in as well. Make this a team effort on your behalf. You are worth it. Don't feel bad about time wasted with the inferior (first) onc. Things happen and you are in the present, you have learned and you can now make better and more informed decisions. Doctors are not Gods....and some, I guess, are not even great. There must be some docs around or within the realm of consultation for you who know about hepatic pumps, risiong and lowering CEAs and who can create a sense of understanding and trust for you. If not, then come back to the table and discuss alternatives. I hope this helps a little bit. Believe me, it is easy for me to offer advice, but I know that you are worried and contemplative. All the best to you and I hope that a few calls bring some needed info for you - Maura
  • terril
    terril Member Posts: 296
    #3
    Hi Optimist!!
    I just read your post. Earlier I asked how you were doing. Now I know. Be strong. I have heard the hepatic pump goes after the tumors directly because it is a line to the liver. Be strong. Again, my prayers are out to you! Terri
  • JADot
    JADot Member Posts: 709 Member
    #4
    Hi Optimist:

    Are you on a nutritional plan now? I've read some incredible stories of people who shrank their cancers and healed themselves when chemo failed. I am not at all suggest that you don't take chemo, but I am suggesting some nutritional treatment on the side.

    Great books to get you started on this:
    1. Beating Cancer with Nutrition, Patrick Quillin
    2. Spontaneous Healing, Andrew Weil

    There are many case stories in both books on people who healed when conventional meds are not showing results, many of the examples are from cancer patients.

    Please give the books a read. Knowledge is our best ally in the fight. Emily on this site has healed herself w/ nutrition, over 4 years NED.

    Best of luck to you, keep the faith!

    JADot
  • midnte0708
    midnte0708 Member Posts: 166
    #5
    Hi,
    I read good things about the hepatic pump and also alternating between systemic chemo and the hepatic pump. I asked my father (he has colon cancer w/liver mets)to ask his doctor and the doctor didn't really think it was very effective. I don't know why...maybe my fathers age? (62) or maybe his insurance? I dont' know.
    I also remember a post you wrote a while back about going to Rochester for the radiation procedure. I was wondering if you found any info on that?
    Good Luck,
    Sue
  • optimist
    optimist Member Posts: 51
    #6
    midnte0708 said:

    Hi,
    I read good things about the hepatic pump and also alternating between systemic chemo and the hepatic pump. I asked my father (he has colon cancer w/liver mets)to ask his doctor and the doctor didn't really think it was very effective. I don't know why...maybe my fathers age? (62) or maybe his insurance? I dont' know.
    I also remember a post you wrote a while back about going to Rochester for the radiation procedure. I was wondering if you found any info on that?
    Good Luck,
    Sue

    I pursued a few different options involving radiation. The doctors confirmed that systemic therapy would be better. I have seven liver tumors. They felt that even if they isolated each tumor with radiation, some radiation would spill over to the healthy liver. They felt that this would be too toxic. It also may not be effective because other tumors may be developing where they can't see it.

    Radiation oncologists are developing all sorts of new procedures, so there may be hope for the future. Even now, if my tumors were not as numerous and spread out, it may have been an option. But for now, I'll hope for the hepatic pump.
  • optimist
    optimist Member Posts: 51
    #7
    JADot said:

    Hi Optimist:

    Are you on a nutritional plan now? I've read some incredible stories of people who shrank their cancers and healed themselves when chemo failed. I am not at all suggest that you don't take chemo, but I am suggesting some nutritional treatment on the side.

    Great books to get you started on this:
    1. Beating Cancer with Nutrition, Patrick Quillin
    2. Spontaneous Healing, Andrew Weil

    There are many case stories in both books on people who healed when conventional meds are not showing results, many of the examples are from cancer patients.

    Please give the books a read. Knowledge is our best ally in the fight. Emily on this site has healed herself w/ nutrition, over 4 years NED.

    Best of luck to you, keep the faith!

    JADot

    I have read many books on nutrition over the years and I have always followed a healthy diet with lots of fresh vegetables and fruits. I have juiced at times in the past. And look where it got me - Stage 4 cancer in my 40's. However, I still follow as healthy of a diet as possible. This can be difficult with my nausea and fatigue, but I do the best I can.

    With everyone's recommendation, I will read Patrick Quillan's book and warm up my juicer again. However, I am afraid of overdoing it because I am still on heavy duty chemo.
  • JohnWest
    JohnWest Member Posts: 14
    #8
    I had my colon and rectum removed followed by 3 months of 5FU. Then I have recurrence of colorectal cancer in pelvis soft tissue in anal canal/sacral space. It is inoperable and I start regimen consisting of 25 radiotherapy fractions spread over five weeks, i.e. 25 weekdays and a course of Capecitabene (Xeloda) tablets soon. For more information look at my website http://homepage.ntlworld.com/jmwest/ileo.htm

    John West

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