Oct 11, 2012 - 1:27 am
I haven't really had time to post much in a while but thought I'd give you an update on my daughter's situation. For those who don't know me, this is the story: my daughter (my only child) was diagnosed Oct. 10, 2011 with stage IV colon cancer with multiple tumors in her liver. Age 32. Nobody has really said how many exactly, and she has not wanted to know. They were inoperable. Her CEA at diagnosis (drawn the week before) was nearly 3,000 and went up to 6,800 over the next 10 days when she was in the hospital having a temp colostomy put in and a colonoscopy, port and IVC filter installed, etc. Her first (only) baby was 6 1/2 weeks old when she was diagnosed. It was a nightmare.
She immediately began Folfox and in December started radiation. She did not get Avastin because she had blood clots in her legs. Her CEA started dropping and she had a good response to the treatments. She had LAR of the colon tumor in February. Right before stopping it for the surgery her CEA had stalled and started creeping up. So the doctor made the decision to start Folfiri plus Avastin after she healed from the resection.
Her oncologist has been negative from the start, not so much to her but he didn't mince words with me. Basically, he had no hope for her beating this. After a long letter from me he set us up with a liver surgeon, probably thinking he would confirm "inoperable" and send us on our way. The liver surgeon recommended Theraspheres to try to shrink the tumors to operable. So he sent us to the interventional radiologist. This was all a well-respected cancer center, now with NCI designation. She had the most tumors in her right lobe and they did Theraspheres on it first, on May 25. Then she had the left lobe done on June 27. We were told she could have them again if the first time did not work, and the goal would be eradication of the liver tumors so that she would not even need surgery.
She had a follow-up scan in early August and got a call from her doom-and-gloom oncologist that he had been contacted by the IR and told it worked on the left lobe but not the right and that there was tumor growth on the right. Her CEA had gone up during all this and the oncologist decided the Folfiri was no longer working, so he stopped the treatment. In a phone conversation with my son-in-law he confirmed he was ready to tell her there were no other options. Then, to top it all off, my son-in-law was at a local casino with his dad and other relatives celebrating his dad's birthday. He ran into the interventional radiologist there who told him the Therasphere treatment did not work but he could give her the spheres again to try to "buy her some time." Needless to say, my son-in-law was devastated.
So... we were in panic mode and didn't know what to do or where to go. My son-in-law had called me about what the doctor said and we cancelled the appointment with him and decided to not go back. I called the liver surgeon's office and begged him to get us a referral to the colon cancer "guru" oncologist there at the cancer center. (My daughter's oncologist told us her waiting list was too long, we'd never get in.) And I called the Cancer Treatment Centers of America in Tulsa - I know several people who have been treated there successfully when told around here "nothing more can be done." And they got us right in. My daughter had missed one Folfiri treatment, the week before, because the oncologist had stopped it and we ended up cancelling that appointment anyway.
The new oncologist at CTCA ordered blood work and we learned her CEA had dropped considerably, so the Folfiri had NOT stopped working. AND they told us that she was a candidate for Erbitux, which had never been mentioned. My daughter and her husband had wanted to go to the oncologist visits with just the two of them, so none of the rest of us ever went or got to ask questions there. Also, at the CTCA, several doctors told us that it was way to early to make the determination that the Theraspheres did not work, and that they never use CT to assess after spheres because tumor swelling from inflammation can look like "growth." This is the same thing that Suzanne Lindley of Beat Liver Tumors had told me. They immediately got her back on her chemo, Folfiri, and added Erbitux.
So... she had 3 treatments at CTCA and I went with her for this last visit (4th) and her CEA after 3 treatments was down to 85 from 800. And she is doing so well - they have done several different things for her - accupuncture, physical therapy, massage, naturopathic meds, pain management, treatment of her neuropathy, etc. - and her appetite is back to normal after a YEAR and she is gaining weight, looking great, and off all pain meds and sleeping meds. She is active and energetic and cooking and shopping and doing everything she could not do. We'll see what her CEA is this time. She is healthier now than she's been since before the baby was born (we didn't know what was wrong with her yet, thought it was the pregnancy).
At CTCA they plan to give her 6 chemo treatments, then at the 7th visit they will scan to see where we stand. I am thinking it is going to be very good news. I can't tell you how impressed I am with the Cancer Treatment Center of America and how glad I am that we went there. I had been skeptical about it - the commericals and all. The whole experience has been life-changing for my daughter. I know it is such a controversial subject on the boards. Yes, it's for profit. It's not a teaching facility. Everything has been covered by her insurance, just as it was before.
I had previously contacted a doctor at the NCI comprehensive cancer center in our state who does HAI and he was going to see my daughter. But in setting this all up I talked with his assistant who told me they had never brought someone to operable with HAI and only used it to "buy time." So, that was out of the question. I know Dr. Kemeny at MSK does it with curative intent for some patients. We have still not ruled out contacting her. The people I've met on this board and Colon Club who've had great success have had liver resections and HAI pump installed. We will regroup after this next scan and decide what next.
But today I'm just happy she is doing so well. She is back to her old self - energetic, assertive, having fun and doing all the things she hasn't done for well over a year. She was so sick at this time a year ago. I was terrified of where we might be a year from then. A year ago today Oct. 10 I got the call from her, "Mom, I have colon cancer." And our lives were forever changed. It's been a grueling year. Today I got a call from her: "Mom, you should see all the things I just bought at Joann's! I spent too much money but hey, I saved $40!" She was happily decorating the house for Halloween and planning dinner for company tonight. They are having a ball getting ready for their baby son's first "real" Halloween so they can dress him up as a Tiger, show him off and eat his candy!
I've learned not to look too far ahead. We are planning for her to get well. People do, you know. I firmly believe that if you don't have hope, if you go with the statistics and decide that whatever you do, this disease is going to win in the end anyway - it will. So we have decided that it is not going to win.
All of you here have been such an inspiration to me - letting me know that this disease can be beaten or can be managed and that you are fighters. There is not the doom and gloom here that was forced on members on another forum by a member who wanted to be sure everybody with stage IV understood they were doomed from the get-go, as she believed she was. I do not believe in extinguishing hope. It serves no purpose. I backed away from the boards after reading some of the negative stuff and being terrified enough already. But I hope to get time now to get back into it again.
I wish all of you well and I'm thankful you are sharing your experiences here on CSN. You have helped save my sanity.