CEA Numbers and Chemo

Greetings everyone!

As you all know, I had my chemoembolization on January 7th. I also had 5 rounds of CyberKnife to the tumor in the muscle near my left kidney from January 21-27. On January 28th I started new chemo: Alimta + Avastin. I haven't been posting my CEA numbers though. I see the last one I told you about was 67.9 on 10/28/2013. Here are the ones since then:

• 11/13/2013: 39.3
• 11/18/2013: 45.6
• 12/6/2013: 87.5
• 12/19/2013: 150.9
• 1/3/2014: 216.5
• 1/16/2014: 229.1
• 2/2/2014: 185.7

It's worth noting that when procedures such as chemoembolization or CyberKnife are performed the CEA will initially rise because of the CEA released by the dying tumors. What I like in that list is that my most recent CEA has come back down a bit. The next CEA will be done at the end of next week, probably Friday.

The chemotherapy that I'm on wasn't too bad this first round. A little tiredness, no nausea to speak of. My nose is going to get dry and sore (bleeding) inside again from the Avastin, though. I will repeat it every three weeks as long as it seems effective. Since the Alimta is a lung cancer drug then there's no guarantees but the Alimta is very similar to a drug that's being used in Canada (it may be in a trial still) that is being shown to have high effectiveness against colon cancer. I've said it before but will say it again: I am pretty much a one-person clinical trial at the moment. My oncologist had to fight hard to get insurance to pay for this drug and I'm glad they finally agreed.

Next week I will have survived 6 years since my diagnosis. I just thought I'd toss that out there. :-)

The Final Plan - for now

Howdy folks!!

Since my last post I went into the hospital for the chemoembolization, on Tuesday January 7th. This time was a bit different from the last time. I was sedated but still awake and aware. The reason for that is that they instructed me a few times to take a breath and hold it while they took images of the blood vessels and tumors in my liver. That way the doctor could thread his catheter up certain blood vessel branches in order to target specific sites where the tumors were. This approach (rather than blanketing my entire liver) allowed him to place the chemotherapy-coated microspheres into about 60% of my liver, sparing 40% from treatment. He said that colon cancer patients usually eventually die of liver failure so his goal is to spare the liver as long as he can to keep it running. I'm told that the chemoembolization isn't a one-stop thing, I'll have to repeat it when necessary. He said I can do it as often as every two weeks, but that's a bit too frequent for me!!

I did not experience as much pain and nausea this time around as the last time and only had to stay one night in the hospital. I went home on the 8th of January. I spent the next couple of days resting but then was up and helping with chores and projects around the house all weekend. I'm still having some pain in my right side from the procedure, and it's hard to take a deep breath because of it, but in time that will go away.

I am scheduled for 5 CyberKnife treatments starting next week to take care of the pesky little tumor near my left kidney.

Yesterday I received my Stivarga medication which has some unpleasant side effects. But it is worth trying it, no harm done. My oncologist had asked the insurance company for approval to try a lung cancer drug called Alimta. I had an assay done a while ago which suggested that my tumors may be sensitive to Alimta so it seemed worthwhile trying. You don't know until you try, right? Well, the insurance company denied it and my doctor went through the appeals process to get it approved. Up through yesterday it looked as if it would stay denied and I got the bottles of Stivarga pills shipped to me, ready to start taking them on Sunday. Then today I got the news that the oncology office received a fax that the Alimta was approved after all!! So we are switching gears really fast to try the Alimta first while we have an active approval. We can always go back to the Stivarga later since it's easily approved.

The Alimta will be infused every three weeks along with Avastin, starting Tuesday January 28th. After a couple of rounds (about 8 weeks) my doctor will order a fresh scan and then we will see what all of this (chemoembolization, CyberKnife, Alimta, Avastin) has done to squash (hopefully) the tumor growth.

Next steps

Good morning.

Yesterday I summed up my next step in a nutshell (posted on Facebook). Here's the entirety of the post: 

I'm going into Stanford hospital on Tuesday for chemoembolization. I'll be in the hospital overnight getting quality sleep. I'll return home on Wednesday and will be tired for a week or two.

Sometime after that I will CyberKnife the small tumor in the psoas muscle near my left kidney. I think that process is in the works. I had a MRI for that on Friday and need a CT scan as well before that takes place.

I will then start taking Regorafenib to see if it will help. As you can see, it has some unpleasant side effects. But dying is unpleasant too. :-)

So, that's the plan in a larger nutshell.

For the record, we still never heard anything from MD Anderson. I sent them a hate email earlier this morning expressing my extreme disappointment and told them that I would be sharing my lack of experience with them to everyone who asks. And also I'm sharing it on this blog. Here is that email:

Rochelle,

On December 12^th I spoke with you about my case being dropped/ignored by Charles Jones. He did not reply to an email from me asking for a direct response on December 1^st and also did not respond to a voice mail message I left on December 6^th. You indicated to me that he had not made any notes since November 19^th yet he communicated with me for the last time on November 22^nd. In that email he noted that additional records were received on  November 20^th but he failed to note this in my chart and started ignoring me at that time.

Since I spoke with you on December 12^th I have heard nothing from anybody at MD Anderson. We are 100% no longer interested in an appointment there which seems like a moot point anyway since it seems we were never going to be offered one. I just wish MD Anderson had not wasted my time and other medical facilities’ time by requesting records to be sent. If MD Anderson had never intended to follow through with the process of being seen by the staff there then we have would preferred to be told that up front.

I will be happy to let anyone know who asks about my lack of experience with MD Anderson. People ask me frequently if I have consulted with the larger cancer centers in the country and I will not hesitate to tell them about the lack of attention from MD Anderson. I’m so disappointed with that facility, especially since it’s in my home state of Texas. What a disappointment.

Regards,

Laurie Coleman