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

Posts: 85
Joined: Mar 2009

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.

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!


Posts: 827
Joined: Jan 2010

I am so sorry for the disappointing news and I truly hope that next week will be in the "upper week" category.

Very best wishes to you and your hubby.


geotina's picture
Posts: 2122
Joined: Oct 2009

I'm sorry for the disappointing news. Look at the 2/15/10 posts, specifically one by board member Peterhw, it is regarding his second clinical trial. This appears to be working for him. The drug "sorafenil" seems to be doing its job. What is the chemo you husband will start next week? Is it the clinical trial? I hate this disease. Take care - Tina

Posts: 85
Joined: Mar 2009

He said that he will start on the Xeloda pills & Vectibux next week. In the meantime, he is trying to get him in a clinical trial that is primarily in Nashville to try Perifosine. He says it's also being done here in Atlanta, so hopefully we don't have to do so much traveling, but if need be, we will. CB is not anxious to do anyting at Emory. We had a very bad consultation there last year, so he's not too happy with them. We will just have to see. He did say he is upset or worried. He now understands that there will be ups and downs, so we move forward. As long as the dr. says there's nothing else, period, we will continue on, and even if he did, we would be looking for other dr's opinions. You all have taught us well!


Posts: 3692
Joined: Oct 2009

I am sorry for your disappointing news, but I think you have the right attitude heading to a new path. Best of luck; please keep us updated.

pluckey's picture
Posts: 484
Joined: Jul 2009

I'm so sorry about the news. This disas is a constant roller coaster.
I was also diagnosed with Stage 4 in march 2009. CEA started at 1400 and I am 2.5 today. Mets all oer the liver.
My coctail has been Folfiri/5FU, ironoteacan and Erbatux. I've had remarkable response to that coctail. the only reason my onc didn't start me on Avastin was because i hat an inficetion in the incision site.

I am going for liver resection at Sloan Kettering in March....there is HOPE....Keep asking questions, searching for options, and never give up

((HUGS)) PEggy

ittapp's picture
Posts: 385
Joined: Jun 2009

Hey Carolyn, I can't believe all this went down in two days. So, I am assuming that the Sir Spheres are out now? I will be praying for you guys, and pm me if you need to talk. I am here to help if needed. Patti

Posts: 85
Joined: Mar 2009

It has definitely been a roller coaster. Sir Spheres is out for now. The dr. said it would be too much for his liver. I am looking at a print out of his CEA levels, and they shot up from 21.7 on 10/29/09 to 382.5 on 2/10/10. That is not good! This is so incredibly scary for him, and me. You can tell it's taking a toll on him. He's started to get a little depressed as the day has gone on. I want to tell him not to give up, but I understand that this is a big let down. I'll watch him for the next few days and just try to be there for him. He normally bounces back after a few days. We will see. In the meantime, the dr. is making calls and trying to get him in the clinical trial at Emory. We went there for a 2nd opinion, and the oncologist there was terrible! Until he can get in the trial, he will probably have to start the Xeloda pills & vectibix. I've started doing research on Perifosine, and so far it sounds promising. I will definitel keep you up to date.


tootsie1's picture
Posts: 5056
Joined: Feb 2008


I'm sorry the nes was disappointing. I do hope that y'all will get some very good news in the near future.


Posts: 965
Joined: Nov 2008


I am sorry to hear that you and CB are having these challenges. I send you good thoughts and prayers that you find the answer you are looking for. You know I am here in NJ to help you in any way that I can, if you decide to come north for evaluation or opinions.

I send you hugs and love,

Kathleen808's picture
Posts: 2361
Joined: Jan 2009

What an up and down for both of you. Your husband is blessed to have you by his side. I am glad to hear that the doc has plans. I am holding you in my prayers.


Posts: 85
Joined: Mar 2009

Today is better! We had a good nights sleep (with help from a Xanax - for me) and I've talked to him a couple of times. He's good. He still thinks we should be talking to other people, and looking for other options. He is going to call around today and see what he can find out. I guess my question is, does any oncologist ever work outside the box? I think there are a certain amount of chemo drugs and combinations and if they don't work, there is nothing to be done. That is crazy to me. Dr York explained how the drugs come to market, how they may have 30 or 300 people taking one specific drug for a certain amount of time. Maybe 70% respond favorably at 12 treatments, 20% at 13 treatments and 10% at 14 or 15 treatments, but after the 12th there's not that much difference, so they get approval from the FDA and set it for 12 treatments. They don't go further eventhough you may be in the 30% range that might have benefited with some extra dosages. Although I understand the protocol, when it's you or your loved one, you kind of want to say protocol be damned. But anyway, that's my rant for the day. I thank everyone for their support and well wishes. We are plugging along, not claiming anything but a cure.



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