Sunday, May 15, 2011

The Truth Be Told

I guess it's time to come clean and provide a bit more detail about the latest bone marrow tests and chemo. A couple of minor things first. I'm doing OK now. Still have an uphill fight, but still fighting. Second, a couple of comments disappeared from my last posting. To the bloggers who put those comments there, please understand I didn't erase them. I have no idea what happened but one day they weren't there. Cyber ghosts.

Now for my coming clean. My last bone marrow biopsy was March 31. Next one will probably be in a couple of weeks. The last one was more troubling than any previous ones. Per Rifkin, my disease is raging mad, worse than its ever been. I did not expect the news would be good, but it was worse than I could have imagined. Below are a few of the findings from the bone marrow report.

--Plasma cells 93% (normal is 5% or less). These are the cancerous cells. Many atypical forms present. My plasma cells were at 90% a couple of times previously. Before the transplant in Little Rock and before the transplant in Houston.

--Some background: Healthy people have 46 chromosomes (for males that consists of 22 pairs and an x and a y chromosome). When I first went to Arkansas I had 46 normal chromosomes, which was an improvement from when I was first diagnosed where I had a couple of chromosomal abnormalities. The improvement was thought to be the result of the velcade treatment.

--I now have 52 chromosomes; the extras being clones. Now that's a scarey thought. Me cloning myself. So I said to myself, "self, what's with these extra chromosomes...?" Now seriously, having more chromosomes than 46 is better than having less. I haven't figured out why, but then more is usually better than less in most things in life. These multiple chromosomal abnormalities often appear in the more advanced later stages of myeloma. Not good.

--My M spike (the level of M protein) in my blood is 2.8 (normal being 0). It has been much worse (4.4), but Rifkin attributes the lower level to the myeloma not being as productive in producing M protein, which only means the M spike and IGGs aren't going to be that good in projecting the stage of my disease.

--M spike has now appeared in the urine. Not good. This hasn't been found before and is another sign of the advanced stage of the disease.

Rifkin spoke with a number of his colleagues around the country, including my doc at MDAnderson and the consensus seemed to be the high dose cytoxin--maximum 2 treatments. Because of my languishing white count I was hospitalized for both of the cytoxin treatments. I handled those quite well, as I have most of my high dose chemo. That being said, I'm not optimistic about the cytoxin bringing the myeloma down to any significant degree. This is an alkaline based drug, as have been all of my high dose chemo treatments (5 thus far, including the 3 that preceded each of the 3 transplants). My body has not responded to any of these treatments. Despite my repeated objection to such treatments, following the failure of my first transplant, each doctor has had an explanation why this time it would work. Wrong. My doc at MDA told me candidly they have no other drugs that will wipe out the cells as effectively and let the body start over--even if the drugs don't wipe out the cancer cells. So they filled me with cytoxin. Bone marrow in 2 weeks or so will tell the tale.

Now, with all that I'm not hang dogging it. It has been difficult for my family, mother, brothers, sister, brother in law and those close friends who know the full story. But you know me, ever the optimist, the problem solver, the enjoy each day kind of guy. So, while we're preparing for the worst I'm working on solving this problem myself. I'll do most of what my doctor says, but being a problem solver, I've decided I need to figure this out for me. So I've delved into the details, so to speak. You naturopaths will appreciate this and any suggestions you have will be appreciated.

I am on a daily routine of carrot, beet and apple juice. Curcumin. Triple Omega (flaxseed, omega 3,6,and 9, and olive oil). Pro biotics. Vitamin D, B-6, and B-12. Some of these I've been on for awhile. I have always had good results with steroids and am on 50 mg every other day. The steroids boost the chemo and I figure they could boost the effects of these natural vitamins, antioxidants and the like. Curcumin has been discussed in a number of myeloma blogs over the years and more recently has shown not only an ability to increase the effects of antibiotics, but also the death of cancer cells.

And now let's wind up this long post. I understand a few things. First, we never know what is going to happen. The doctors don't know. I don't know. No one knows. So there is no need to fast forward to an unknown outcome. Things will happen as they are supposed to. I firmly believe at any moment in life everything is as it should be. If it doesn't feel right it is only because of my perceptual limitations. I am at peace with whatever happens. Second, having recovered from the high dose chemo, I don't feel much different than before we got the news from Rifkin. My main problem is fatigue. I'm waiting for the weather to settle in to nice spring/summer weather so I can ride my bike, take walks, go on picnics with Susan, and continue to enjoy life. And finally, I don't have the words to express the depth of the gratitude I feel for each and every one of you in my life. I love you.



Jill said...

Wow - reading that brings back so many memories of my dad's battle with MM.

Just to add something to the mix - Have you checked out the Block Center in IL? That was where we were headed next with my dad.

My prayers are with you. I think of you often and pray for you and your family.

tim's wife said...

A lot to take in. I'm sorry to read these numbers but just amazed and enlightened by your words. You are a class act and I admire your attitude SO much. I'll be adding you to our prayer list this week.
Hope you see an improvement with your next test. Sending Jersey love right back at ya!

Nick said...

What an incredible demonstration of grace, courage and positivity you continue to be.

You remain in our prayers which will be doubled. I am sure Rifkin has thought about Carfilzomib, a full allo, etc. I am sure you have many brilliant people alongside you problem-solving. You and Susan are never far from my thoughts.

Stay strong, Dan...I pray that we will be dancing on Myeloma's grave together sometime soon.

bemiller said...

Wow Dan - what a great attitude you have. I can relate to many of your comments about your advanced disease. You and Ernie have been such "troopers" on your journeys. My prayers are with you and your family daily ~
Ernie & Bobbi

Sandy said...

Dan -- I have been praying and intending for you on a regular basis, so that hasn't changed, even though your numbers have.
There have been studies that show when hundreds of people all pray at once for something, amazing things happen - so I am sure there are hundreds who are praying for you and your family now and we might be joined by many more to see something amazing - like your next test results. So be it and so it is.... with love from South America.

dan patterson said...

I forgot to note that Rifkin just received approval to be one of three centers in the country that can have access to carfilzomib for patients like me--eligibility requirement for this study is at least 3 treatment failures. I think I hit 3 about 3 years ago. As for the allo, I had the full allo last year. I believe I mistakenly referred to it as a mini allo, but they gave me the full enchilada: high dose melphalan--200mg/m2 along with fludarabine. I was given the choice of 140 or 200 melphalan and took the big dose. Thank you everyone for your words of encouragement.

Steven L. Ritter said...

Thank you for the update! I hope you get control soon and hit the bike. Every time I'm riding you are on my mind. Prayer your way every day!

shawnandjaike said...

Hi Dan,
Jaike and I just read the update. We agree, the universe is unfolding as it is meant to.
We love you.
Shawn and Jaike

Brett said...

Thank you for posting such an honest and forthcoming update. Your bravery and strength are light to us all.

I don't know that you know that you are in my daily meditation chant for health and harmony. You have been for the last 2 years. I will chant your name with even more intention than every before.

As you know, you have beat the odds many times in your life, not just since you've been sick. There is no reason to think you won't do it again.

Gassho, my friend.

CancerKicker said...

Keep dominating Dan. I am impressed with your attitude and it serves the MM community well to have you sharing your story to encouarge us and keep us close to the reality of this disease. Much love your way.-Phil

sailor said...

Hey, Bud...we're here through thick and thin. My healing thoughts and prayers I send to you and everyone...

You are one special guy, Dan. Thanks for making us all better people by your example of warrior. You'll do this your way and we'll all stand with you to support.

Hugs, Sailor