Monday, December 20, 2010

Monday, September 27, 2010

End of Summer

Thank you for following this blog, I realize that blogs are usually updated more frequently but my subject matter can be overwhelming so I write when I can.
I have no treatment regiment going on at this time, I am in the "no cure-nothing can be done" camp at this point. There are a few clinical trials going on that might fit but they are still in phase 1/2. We are still researching alternative treatments and supplements, as you can imagine, there are more "cures" out there than people have noses! Cancer is such a huge business these days that those with Cancer really will pay anything for a chance. I've had people send me things to try and upon researching them, found they would actually help to kill me! Many types of cancer, many are curable with proven treatments, but people make the mistake of thinking that the cancer is cancer, and it is not. If you have cancer, do your homework for YOUR particular type of disease and remember "experts" are everywhere for just $39.95 plus shipping! Be sure you have a support system around you!
As for me, I returned to my local oncologist in September. Blood tests showed low numbers again so another blood transfusion I got. Looking into the cause of this? Liver is very enlarged and growing, length now spans from upper chest to waistline, and right side abdomen is literally rock solid. Pain continues to be a full time thing, as I am now on pain meds 24/7. Energy levels vary and strength loss is huge. Weight loss is still an issue, I am trying to eat everything I can to maintain but it doesn't often stay down.
I am very thankful to all of you who follow this blog and appreciate your thoughts and prayers. I do want you to know that although my faith in The Lord is not shaken, this is a hell of a disease to deal with. I am very human and live with doubt, anger, discouragement, and the like but I choose to not let those things define me. It takes ALOT of work and I am not always successful. This disease wears you and your family out. It is very stressful on my wife and kids, but we all know The Lord is in control. I search everyday for anything that will help while I wait upon Him and His Healing.

Sunday, July 18, 2010

Summer Update

Just saw my local oncologist. Particulars are basically that all cancer is growing, lost another 15 pounds in 6 weeks, and now have anemia (trouble producing red blood cells). I had to have a blood transfusion due to having a hemoglobin count below 7 (normal would be 14-16), a five hour event. Nausea has not really come back but I do get an upset stomach and then vomiting follows. Appetite is still actually good.
Since the blood transfusion I have started back on a supplement that addresses the blood issues, so we will see if the fatigue subsides a little and the blood counts increase.
Due to to current situation of having no cure or treatment, Doctors are encouraging me to seek "Compassionate Care" treatments. Those are basically: you get to take none FDA approved drugs that showed something positive in a trial that is not complete. So they surmise that, "hey it might help". I have resisted the chemo route as I believe it will hurt more that it helps. We are researching the particular drug they have recommended and will educate ourselves before we decide. Still fighting this freak of a disease and working hard to keep positive when everything associated with cancer is negative.

Thursday, July 8, 2010


Sorry for the delay in updating the blog, been waiting for some good news to post! Since my last update I have gotten off the nausea meds as they stopped working and actually made it worse. I have continually been taking supplements from Mannetech and they seem to be the one thing that settles nausea. As for my physical status, I will see my local oncologist second week of July to know for sure, but everything seems to be progressing. My right side abdomen is hard as a rock, which is the enlarged liver, it pushes on my stomach and intestines and makes eating and digesting a meal an event. I still have the fluid on the heart, which is a real problem due to making it hard to breathe. Recently on vacation to the gulf coast-high humidity and 100 degree weather, made it a real chore to breathe easy and climbing stairs is an Olympic event!
The latest symptom is Edema, which is fluid retention. After being on my feet for a couple of hours my ankles swell up. It has gotten as bad as my feet, ankles, and legs below my knees have swelled a pretty good bit. I have also started taking the doctor prescribed pain meds to try and help. I had hoped to not be taking those but taking 1000mg of Motrin every 5 hours everyday is not good for the stomach. So you deal with the pain until you need some help. Fatigue has become a huge deal as I am a napper now, need at least 2 naps a day after burning some energy.
Still have not been successful at finding a new clinical trial. There are some treatments out there that are still being looked at, but most of that stuff is very expensive and experimental.
We continue to pray. I know God heals. Cancer at this stage is so much more a mental fight than a physical one, so we continue to do everything we can to stay upbeat.
Thank you for your prays...the fight continues.

Tuesday, April 13, 2010

The Change of Spring

March and April have brought more change than just the weather. I stayed in Springfield and got a CT scan of the pelvis/chest/abdomen in March. No course of action seems to be left for me at NIH/NCI, great people, but even they can go so far with an incurable disease.
The CT scans revealed that the liver tumors are growing at a good rate, the tumor outside the liver is growing and is located between the spleen and the head of the pancreas. I have also now developed Pericardia Effusion (fluid on the heart), this causes shortness of breathe, circulation issues, and fatigue.
Since February I have lost 32 pounds, a constant upset stomach keeps most things for staying put and one meal a day is a big deal. The right side of abdomen is hard, like when I used to have a six pack, now its just like a quart on one side, lol. I have just seen my local oncologist to receive pain and nausea medication, trying to stay off pain medication as long as possible as it is addictive, but nausea meds are helping me keep food down!
Actively looking for other clinical trials to participate in but my true hope and trust is in the healing power of Jesus Christ. The Lord has always been faithful to me, even when I was not. I know the Lord heals, I know not everyone is healed, but I know that will not change what I believe and in whom I believe.
My wife has been an incredible partner and help in the last 20 months, really all 20 years too. This disease takes a toll on all those involved and I would not be here without her support. If you are fight cancer or any other disease be sure to have a support system around you-it matters.
I keep on keepin on...

Wednesday, February 24, 2010

January/February Update

I would like to thank all of you readers/followers of this blog for your thoughts, prayers, and concern. I started this blog as a way to update my health status for those interested and share some personal thoughts.
My current status is: several large tumors in liver growing, tumor in brain-still there, but radiation looks to have been effective, tumor in the bone of my hip has no change, the latest discovery was in November at NIH/NCI when a tumor was found outside the liver in the abdomen, between the liver and the stomach, it is thought to have come through the lymph node system. This is the discovery that prevents any further PHP surgery, which was actually effective. This new tumor pushes on my stomach and prevents me from normal eating (not a bad thing), causes me alot of pain, and when combined with the liver pain really drains on me.
I was scheduled to return to NIH/NCI in February but global warming snow storms prevented that. There is not really any course of action for me at this point. I have purposely avoid standard chemotherapy due to all the side effects and lack of real results. PHP showed promise because of the delivery system that sent chemo drugs directly to the liver and not anywhere else. The brain tumor was discovered after I had taken 2 cycles of oral chemo, so I said no more. The newest thing out there is gene type therapy where the can attack the cancer genes, this is very experimental, called B-raf, and I am trying to test into this clinical trial- you must have a curtain set of blood and gene sets.
As for the last 2 months, they have been up and down. I have constant pain in my side from my liver, have a constant upset stomach, and at least twice a week can't keep food down. I have been fortunate through all of this to have not had weight loss (although I needed it). Radiation on the brain caused my hair to thin in the back and although I used to have blonde hair it is now brown. But the last 2 months has started to effect my weight, strength, and stamina.
Let me be clear, this blog is for information, I am in NO way complaining. I am blessed! The survival rate for metastised melanoma is 6 mos-2 yrs, I am at 1.5 years and looking forward to many many more. I have great medical care and great faith. You can know many things, but when the test comes what do you really know?