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worrying about my care

optimist
Posts: 51
Joined: Oct 2005

Hi everyone. I have been doing Erbitux weekly and Cpt11 every other week for the past 8 weeks for mets to my liver and abdominal lymph nodes. I skipped one week because of chest and shoulder pain to go to the hospital to take a chest CAT scan and an EKG. All was found to be well. My onc said at the time that maybe the tumors were shrinking and that was causing the pain.
Now the pain is gone and I'm feeling pretty good. However, I just found out that my CEA rose from 11 to 49 within those weeks. My oncologist said not to be concerned with this. The week off could have caused the rise. In fact, the onc doesn't want to do any more CEAs or Cat scans on me. The onc feels that no matter what these tests show, there are no other options. No surgery, no other chemo. Just keep taking Erbitux and CPT11 and hope to make it to the next week.
I feel that I want to know what's going on in my body. If I feel that the Erb and Cpt11 isn't working, I should pursue clinical trials or backtrack to some of the drugs I had used in the past. If I don't take CAT scans, I won't know if there is a new tumor that may be causing another organ to fail which may be prevented. I'm 45 and I have three young children, prolonging my life by any amount of time would make a difference. My onc told me that no one will ever tell me how long I have. So, are they telling me not to take any more tests, just show up for treatment in hopes it may work, until something happens?
I feel at this point I need to go for more opinions. My last new opinion at Sloan, two months ago told me Erb and CPT11 were my last chance. I feel that someone else may have another answer that I should pursue. Thanks guys for listening. Any help would be appreciated.

houseofclay
Posts: 63
Joined: Nov 2004

Hi--I just read your post and I am sorry that you are in this situation. I don't really know what has already been discussed between you and your oncologist, so if I mention treatments that have already been eliminated, please forgive me. The information I have is from the Colon Cancer Alliance conference. My husband's rectal cancer has not required these measures, so I cannot offer personal experience but I completely trust the information. (Sounds like a legal disclaimer--sorry--but I wanted to be clear on where I am coming from.)

Have you investigated Embolization or selective internal radiation therapy (SIRT)? Both of these options are used as curative and palliative therapies. I have more specific information but you could also google Dr. Shawn Meador at the University of Florida. He is in the radiology department and I heard him at a conference. I think you are correct in wanting anything that will give you more time--for the children and also because more time might be enough time for another treatment to be discovered. Clinical trials are another option but again, we did not have to utilize that treatment option.

It sounds like you have done a good job in the past of getting additional opinions when needed. Trust your instincts and if you feel like you need another perspective, get one. Another doctor to investigate is Dr. John Marshall at the Lombardi Comprehensive Cancer Center in Washington, D.C. I have heard him speak twice and I am very impressed with his knowledge and compassion.

I visit the boards very regularly--if you need more information, just post and I'll try to help.

foxy
Posts: 190
Joined: Oct 2005

Hi, you will be constantly in my prayers, love Virginia.

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

Optimist,
I'm a very recent 43year old cancer survivor, I had colon cancer with liver mets. I was dx last Dec, 04 and recently told I was NED last week. I'm married and have a 3yr old son. I know how you feel. If I were in your shoes I would have a serious sit down with your onc and tell him your exact feelings. Tell him your not satisfied with his treatment and you want alternatives, regardless of what he thinks. If you're not satisfied with his/her answers, fire'm and find another oncologist who's willing to listen and act. You're the boss! If I'm you,I'm trying everything, including juicing. If you're not already juicing, I would strongly recommend it. There's plenty of folks ont this sight who swear by it, I'm sure that they would be more than happy to help you get going.
Anyways, hang in there, keep the faith, and remain an optimist.
Buster Brown

glimmerofhope
Posts: 53
Joined: Oct 2005

I believe you would be wise to seek another opinion. Don't believe that you are out of options. I've been told that too.

Have you been told your liver is inoperable? I was told that, but when I went to Duke they said it was operable and I had that done almost 3 years ago.

You may want to read my other notes to folks about what I've done.. While I still show cancer on my scans, I feel pretty good and I'm sure that the Avastin, 5FU, and ammonium tetrathiomolybdate has beat back the colon cancer in my lungs over the last 4 months. The real beauty of this treatment is that it is not very toxic. I've been on it for about 4 months and have just lost a little hair and feel a little rough for a day or so. I get the 5FU and Avastin 2 days every 2 weeks.

Has your VEGF been checked? It's a blood test, I believe that if positive, you should get a good result from Avastin. I was pretty much fed up with standard chemo after being in the hospital for 3 different full weeks due to complications from chemo. But a friend of mine had a good response on Avastin, so I decided to try it and I believe it has worked pretty well in conjuction with the 5FU and ammonium tetrathiomolydate.

Also, I went to the Immune Recovery Foundation in Atlanta and I am convinced that while some of their treatment may be snake oil, some of the things they do are very helpful. This is based on my conversations with people that go there. Most of the intravenous cocktail of treatments they give are illegal or "quasi-legal" in other states. Georgia enacted legislation that allows terminally ill people access to alternative treatments prescribed by physicians. You can get some of the same treatments there that you would get in Mexico. The staff there is very compassionate. This treatment is very expensive and you have to take a leap of faith and pay up front since your insurance company may or may not pay. Medicare definitely won't pay. Just be careful on agreeing up front on how you will be reimbursed... I was able to get most of my money back afterwards since my insurance paid, but it was like pulling teeth. They have a Dr Kinsolving and I put a lot of faith in his knowledge. He is retired from pharmaceutical companies and has worked a lot on alternative stuff in Mexico and I think Europe, so he knows a lot about both. He is the one that told he to look into ammonium tetrathiomolybdate.

One of the things they do is high levels (30 grams/day?) of intravenous vitamin C. I'm convinced this has a lot of activity against cancer. The drug companies aren't interested in it, because they can't make money on it. They want to push these drugs like camptosar (a derivative of mustard gas!)that they have invested close to $1 billion to get approved by the FDA. The oncologists tell you that this will make you sick, it might kill you and it won't make you get well..... but this is what I am recommending. Excuse me? I'll NEVER take camptosar again. If I die from a camptosar deficiency, I'll just have to die.

If your interested in the clinic in Atlanta, they have a web site that explains what they do.

I also went to the Cancer Treatment Centers of America in Chicago. They were very compassionate, but they didn't offer anything innovative for colon cancer. At least that was the case 2 years ago... things may have changed.

Good luck and let me know how things turn out.

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

Hi Optimist,
I have been doing the same protocol at Sloan for the past 21 weeks. I'm usually not too concerned with my CEA. I did go through a big thing a few weeks ago with trying to find out what my numbers were. As you know, only the doctor can tell you this and I don't see her every week, I see her every 8 weeks. I do get a CT scan every 8 weeks and that has been my main source of tracking my progress. I'm surprised they don't want to test you.
I had the colon cancer with liver mets and am now dealing with lung mets.

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