If you are reading this for the first time and want to hear the whole story, look under "BLOG ARCHIVE" on the right. Read the oldest blog first, starting with "The Diagnosis" in January 2009 (click on it) and continuing down. The blog you see below is the most recent and you want to read it last.

Wednesday, February 23, 2011

I'm A Reject

I was rejected for chemo treatment yesterday because despite three days of self injection with neupogen, my white blood count was too low. In fact it doesn’t get lower. It was zero. That makes me very susceptible to infection so please, not matter where you are, don’t sneeze or cough if you are facing New Jersey.

I’m disappointed because I really tried to get myself to the point where I could get normal treatment. But Dr. George explained that the cumulative effect of more than two years of chemo has compromised the ability of my bone marrow to produce the white cells. She was also hinting that I should be talking “things” over with Terry and think about taking a nice trip or otherwise enjoying life. It’s not a good sign when the Chemo Kaiser is leaning towards no more chemo.

My plan now is to inject myself over five days with neupogen and try again next week. I want to see if this chemo cocktail gets any good response. I also believe that God has guided me throughout this and the setback may just be His way of saying that less intensive treatment is the way to go now.

Carry On.


Monday, February 21, 2011

Moving Along

Last week I had chemo treatment number 45, full doses of carboplatin and paclitaxel. Blood tests revealed that my CEA count has skyrocketed to 533.7 but I have been off chemo for a while. Hopefully the resumption will be effective and bring that back down. Interestingly, my liver function numbers have stabilized, in fact even improved slightly. I guess the chemo affects the liver function as do the tumors themselves.

It seems that this particular regimen is tough on me. It tends to result in three days of extreme fatigue, nausea and general discomfort. Just as it did when I first attempted it back in January, it made me feel like I was going to die and if I wasn’t, I wanted to. But thankfully that has passed.

Interestingly, I received a call from Dr. Rybalov, the gastroenterologist. He said he was speaking to Dr. Weiner, the nephrologist about me and they thought it would be a good idea if I started a combination of diuretics to try to alleviate some of the fluid build up. Dr. George already prescribed a diuretic so I’m having her get in touch with him to coordinate. What impressed me was the fact that two weeks after I saw him, Dr. Rybalov was still thinking about me. I’ve been lucky with doctors and in fact the whole health care system throughout this. And for the record, it has nothing to do with the recent national health care reforms other than the fact that I’m now paying more for the coverage.

Over the past two and one half weeks I’ve had the paracentesis twice. They removed 10 liters of fluid each time. I’m now getting albumin infusions with each procedure. Interestingly, the albumin looks like the fluid coming out. I think they may just be recycling the stuff back into me.

Over the last week I had to inject myself with neupogen so hopefully my blood counts will be good and I’ll be able to get the second round of chemo this week as scheduled. We’ll see. And we’ll carry on.


Friday, February 11, 2011

The Results Are In

Well I’ve seen all the Doctors and all the test results are in. The best news is that Dr. Weiner, the nephrologist, determined that my kidneys are still functioning properly. He cautioned that they could start to fail at any time because they are under a lot of stress. But for now they’re good.

Dr. George advised me that the MUGA scan, for the heart, showed some improvement but my heart function is not back to the point it needs to be in order to resume the Herceptin. The danger is congestive heart failure. Keep this in mind.

Dr. Rybalov, the gastroenterologist, delivered some unexpected news although I think it may be very useful. I saw him primarily to determine whether or not I am a candidate for the semi-permanent catheter to drain the abdominal fluid myself. As you may recall from my last post, if the ascites is caused by portal hypertension the risk of infection is greater and they will not put in the catheter. According to Dr. Rybalov, the test results were “suggestive” of some portal hypertension. Portal hypertension is usually caused by alcohol consumption which cannot be the cause in my case. It can also be caused by none other than congestive heart failure. Hmmm. Here’s an example of how multiple doctors don’t always coordinate well. I don’t know how much Dr. George knows about portal hypertension and Dr. Rybalov had no way of knowing about the MUGA scan results. That’s why it’s important to stay informed and act as your own advocate. I told Dr. Rybalov about the MUGA results and he said the ascites was probably being caused by a combination of that and some liver disease. Interestingly, I pondered about the possibility of the ascites being caused by my heart back in my December 21st post. The bottom line is that Dr. Rybalov said he would approve the catheter if I wanted it for comfort. I don’t for now. Rather than take the risk I want to give my heart time to improve more and get some more chemo hoping to knock back the disease somewhat. If that alleviates the ascites I would be real comfortable.

Dr. George agreed that we can go full speed with the chemo now except for the Herceptin. That’s probably good for longer term heart well being. That’s what we’ll do next week.

One more thing. I’ve read a lot about how important it is to exercise as much as possible to help the immune system, the heart and general health. So I’ve been going to LA Fitness as much as I can. I have a pretty intense workout regimen which I recommend. I start with 20 minutes in the Jacuzzi followed by 10 to 15 minutes in the sauna. This routine is made even tougher by the fact that I don’t take a break in between. My fellow patients, push yourself to try this. It works for me.

Carry on.

Tuesday, February 1, 2011

Double Update

Yesterday I, my brother and my sister saw my mother’s oncologist with her. She had the required tests and scans last week. The best news we could have hoped for was that they saw nothing they weren’t expecting and that treatment could be given as planned. That’s the news we got. So she is in a class for which CURE is the objective and statistically very achievable. Obviously we are very thankful. She will begin chemo next week.

As I said in my last post I learned a lot after seeing two specialists, a gastroenterologist and a kidney specialist. The gastroenterologist was suggested by Dr. George to determine whether or not I am a candidate for the semi-permanent catheter to allow me to remove the abdominal fluid myself. We don’t know the answer to that yet. There are basically two probable causes for the ascites. One is liver disease, the most likely cause in my case. The other possibility is a condition called portal hypertension which is usually found in people who drink. I never drank. If it is being caused by portal hypertension I would not be a candidate for the catheter for reasons I’ll explain later. To determine the cause, when I have the next paracentesis (draining) later this week a blood test will be done on the same day. The fluid removed will be sent out for testing and the protein level in it has to be compared with the protein level in the blood.

Assuming I am a candidate for the catheter, which is likely, I will have to make a decision as to whether or not I want it. As I’ve mentioned before there is a high risk of infection with paracentesis. The risk is even higher with the implanted catheter. The way the doctor explained it is that it is a foreign body in the abdomen. This foreign body has “communication” with the outside, constantly exposing it to germs if not handled properly. If it should become infected it is extremely painful, would likely require hospitalization, may have to be removed, and could be fatal. If the ascites is caused by portal hypertension the risk of infection is greater which is why that don’t use them for those patients. I would also have to consider the restrictions the implant would impose. I would no longer be able to mountain climb, sky dive or bungee jump.

This doctor gave me the prescription for the next paracentesis but also ordered that albumin be injected as the fluid is removed. The albumin should help to counteract the negative effects draining has on the kidney and my blood pressure. He was so helpful I figured I’d take a shot and ask him if he had a cure for me. He didn’t.

From his office I went to see the kidney specialist. He was very informative, most notably in explaining why I have so little urine. Because my fluid is escaping into the abdomen, it is not flowing through the blood stream to the kidneys. The kidneys, since they are not getting fluid, are tricked into think that I am dehydrating. They shut down urine production to conserve fluid. This forces more fluid into the abdomen. This is a self perpetuating condition which they can do nothing about. The longer it continues the more likely it is that the kidneys will shut down completely, That will be the end. By the way, dialysis has not been successful in this situation. The only hope of breaking this cycle is to treat the underlying cause of the ascites. Hence my quest to get more meaningful chemo and at least stabilize the liver tumors.

This doctor ordered another blood test, urinalysis and a kidney ultrasound to rule out any other cause and to assess the present condition of my kidneys. All of these tests have now been done and I’ll see him again next week hoping to get the go ahead for more chemo. He also agreed with the gastroenteritis’s use of albumin.

Today, weather permitting, I’ll have the MUGA scan to see if my heart is ready for more Herceptin.

So the plan is progressing; get every part of me ready for battle and then head for the front line.

Carry on.