5...4...3...2...1...REMISSION!

We just got a call from the oncologist's office yesterday and the fantastic news is the PCR for bcr-abl was negative. Some of you may have remembered I just celebrated my second bone marrow transplant (bmt) birthday, on November 30. It was great. We had a jumpy castle, a petting zoo and clowns. Ok, actually we only had one clown; me. With these lungs I was almost unable to blow out those two candles (I think my youngest son helped me).

And just a few other things to catch up on. First, I took my wife to Denver this morning for her second neck surgery, which should begin at 12 noon. Of course my thoughts and prayers are with her at the moment.

I saw a cornea eye specialist and for starters he has put plugs in my eyes. This is supposed to keep tears on the eye longer because they can no longer drain where the plugs are. The next thing he has recommended for me is Autologous Serum Tears, which has apparently has some great success. People suffering from severe dry eye syndrome, including that caused by C-GVHD, are the prime candidates for this treatment. First they are testing my blood for HIV and HEP A,B,C. Once those results come back negative I go back to the lab and they draw 15 tubes of blood. It gets shipped to a pharmacy in California where they turn it into red cells that are full of good stuff. They send me three months supply and I use them as drops in my eyes twice a day. I still want to contact the Fred Hutch to get their blessing before I move forward but hopefully this is something that will work for me. Finally, the doctor said he can get rid of the cataracts anytime but recommends we wait until they because a real issue.

Lea, I cannot wait for you to get your appointment in Boston to hear what your impression is of the Boston lenses. Last I heard you had to postpone the trip. I mentioned them to my doctor but he said they are really a last resort because of cost and need to travel to Boston for eval, fitting, etc. And I don't think even my right eye is severe enough.

Overall I am feeling pretty good except that I seem to be breathless and tired much more lately. I just had another pulmonary function test yesterday and there is no change, hanging in there at FEV1 41%. I have to make these lungs work for at least three more years because they won't even think about a lung transplant until five years post bmt.

I have finally finished my UMUC Network Security course and am signed up for Cryptology beginning late January. That's about it. We've had lots of snow these past two days and the boys got a "no school" day today. Nice day to sit by the fire for some total laziness.

Thank you all for two years of wonderful support, emails, phone calls, and blog comments. And continued success to my fellow CMLers and BMTers out there. I hope 2010 is a great year for you all.

~David

The eyes have it!

Cataracts that is. I had a follow-up appointment with my ophthalmologist onbase after four months because my eyes haven't gotten any better. In fact I think they are worse. I can't even get very good focus using my magnifying glass. We the cataracts explain that. My left eye is worse then the other and besides the affected vision, they tend to hurt a lot, as if there is sand in my eyes. I put drops in to sooth them and then I see worse because of the fluids on my eyes. Just one viscous circle. So the doctor has referred me to a corneal specialist who as luck may have it, is also at the Air Force Academy. What I do know is that these cataracts are steroid induced and they can be treated or surgically removed when the time comes.

Last week I also saw my primary care doctor who has adjusted some of my meds to see if we can't get my energy levels higher. I also saw a pain management specialist, who after reviewing all the evidence, has decided to begin with an MRI of the thoracic and lumbar areas and to try me on oxy cotin, which is morphine in extended dose of 12-hours. If it doesn't work out he may increase the dose or try something else. My entire body aches at times from medication side affects, bone density loss, chronic graft versus host disease (c-gvhd) to the eyes, mouth and lungs and my chronic back and abdominal pain.

And finally, I saw my new oncologist in Denver and my wife and I really like him. He obviously has the knowledge in bone marrow transplants we were looking for. In fact, he spent some time at the Fred Hutch and now performs BMTs in Denver. He wants to fight my lung disease a bit more aggressively and so has prescribed me with Sirolimus, another immunosuppresant drug. He also reduced the Tacrolimus because Sirolimus tends to cause the Tac levels to rise. And in fact they did, so much that for now I have come off the Tacrolimus but have increase the prednisone to 60mg. And right when I was shaving a few pounds off my belly. I guess it will soon be back to the 2am eggs on toast and other nightly delights.

Well I can see that my updates are sounding more like gripe sessions. Overall I cannot complain. I have a wonderful family at my side, including a lovely wife who is always there for me, not to mention taking care of the boys and herself. She goes in for a second round of neck surgery in two weeks.

Love to everyone,
~David

Kareem Abdul-Jabar joins us with CML

As said as it is, NBA's basketball star Abdul-Jabar was diagnosed last December with CML and is apperantly a paid spokesman for Swiss Pharmasutical Novartis. Now why didn't they offer me that gig a couple of years ago?

Read more about it at FoxNews.com.

Good luck to Kareem and the rest of our CML patients and their families.

~David


P.S. Thanks to my brother Daryl for the article.

Temporary Disability Retired List update

A couple of days ago I received a letter from the TDRL Board President letting me know they have decided I am to remain on the TDRL because I am still not fit for active duty and my condition is still not stable. I look at it as a free return flight to San Diego where I can visit my parents, twin sister, brother, aunt and some great friends.

I continue to have my set-backs with days I find it difficult just climbing a flight of stairs. Some of my complaints are most likely related to side affects of the antibiotics I am still taking. So I hope to be feeling better once I finish those meds in two days. My white cell counts are still high but a little lower then the last report so the doctor is hoping the antibiotics are winning to fight an infection. But I have a pain in my left side just under my rib cage and I know from personal experience that this is where my spleen would be if it is getting bigger, like it did when I was originally diagnosed with CML. My doctor believes it is most likely my intestines I am feeling and my wife reminded me that the CT-scan I just had should have picked up an enlarged spleen. But I think because I have experienced so many cases of bad news with regards to my health that I now tend to be rather pessimistic.

Anyway, my darling wife has found a new oncologist for me at the Rocky Mountain Cancer Centers in Denver and I see him later this month. I expect he will order another PCR test to look for any signs of BCR-ABL, to ensure there is no sign of relapse. A negative result will certainly put me at ease.

And even more bad news on the Cox front; my poor overworked wife has been having more problems with her neck. Remember, late last year she underwent two major surgeries; one on her back and the other on her neck, both requiring titanium plates screwed in place on her spine. Well she just saw her surgeon about her neck and the verdict is that the bones did not fuse. So now she must get a CT-scan and most likely have to undergo the surgery again. But this time they will have to go in from the back of her neck and screw in another plate. I really feel for her because she is doing so much around here that she cannot afford to be in so much pain. Lately she has been caring for our two boys and for me almost full time. I love you honey and we are all thinking good thoughts for you.

Well that is it for now. I will probably post again after my oncology appointment or after I receive my PCR results.

~David

A struggle but hanging in there

It has been some time since my last update, but I haven't been feeling that great. I have been feeling rather weak and fatigued lately but as other cancer champions can attest to, it comes with the territory. However, about ten days ago I received a copy of the Navy Temporary Disabled Retirement List (TDRL) reevaluation report from my San Diego trip. Nothing much surprising to me except that the blood lab report indicated my white cell counts were elevated, as were my neutriphils (the part of the white blood cells that fight infections). So my primary care doctor at the Air Force Academy ordered more labs and my white counts are still high. He also ordered another pulmonary function test (PFT), a CT Scan with contrast and some other lab tests. The PFT results are the same as the last test and my lungs looked fine in the CT scan. But the scan did find an abnormality of air entrapment in the intestinal walls. The docs are not sure exactly what has caused this but they believe I most likely have an intestinal infection and now have me on anti-biotics for two weeks. The side affects of that treatment have been stomach aches, head aches and diarrhea. I was in bed for the first two or three days but am feeling better now.

Meanwhile, my youngest son is home with flu-like symptoms and there is at least one case of a classmate who has the swine flu. So today my doctor started me on another medication as a precaution. Because of my immunosuppression and lung problems, the swine flu is currently my worst enemy. Before long I might find myself in a plastic bubble. Remember the movie, "The Boy In The Plastic Bubble" with John Travolta? That was in 1976; just a few years ago.

Another medication adjustment is that I am now on a prednisone dose of 20mg every other day; so effectively cutting my dose in half. Hopefully, this will help me to feel better than I have been. I am also attending pulmonary rehabilitation three times a week, which should help me get stronger. It is similar to the other rehab I was doing but lighter workouts and fully monitored during the session with EKG, pulsometer and blood pressure checks.

Other appointments I am waiting for include a sleep study this coming Sunday night, a pain management consultation, and some dental work if Fred Hutchinson approves it. The dental work includes two new fillings and a root canal where old fillings have crumbled to dust. I will also be seeing a new oncologist who I expect will order another PCR test to ensure I am still in that safe place called remission (especially in light of the increased white counts). I'm not too worried about that because the white counts are not very much over the upper limit of normal. Still, there is nothing like a good PCR test result to confirm.

That's about it. I am continuing working on my grad work and enjoying it this term because the topic is Network Security.

Thanks again for all your support and best wishes. My wife and I appreciate it. My poor wife is running herself into the ground because of my limitations. She is a real trooper and I am so lucky to have her by my side. I love you honey and happy anniversary (our 23rd).

National Jewish Health

I am a week late posting this but to let you know how my pulmonary appointments went last Friday, they went as well as could be expected. My lung capacity remains at 42%, which isn't good but at least I am stable. The doctor also told me I do have air trapping in my lungs, which he said would account for the heavy, tightness in my chest.

The doctor, David Schwartz, did some of his training at the Fred Hutchinson and still has good friends there. So while I waited, he went to his office and called his buddies about my case. I was impressed with the quick and direct feedback. So they at the Hutch say I am on all the correct medications for bronchial obliterans (BO), which they called the PFAM program for chronic graft versus host disease (C-GVHD) of the lungs. Prednisone (steroids), Fluticasone (Advair inhaler), Azithromycin (Zithromax antibiotics), and Montelukast (Singulair). They (The Hutch docs) said I will need to stay on the PFAM meds for a year, then discontinue one of the four, wait six months, discontinue another med, and so on. Meanwhile, I am on oxygen as I need it, which is during and after any exertion and while sleeping. The doctor also recommended I get a pulse oximeter so I can keep tabs of my oxygen saturation during rest versus exercise and to compare how I feel to my oxygen levels, etc.

So, I think that is about it regarding the appointment. I do want to thank my buddy Mike W. for driving me to Denver and being there for me during the consultation. He is a great guy and a very good friend. He is still on active duty in the Navy but is planting his roots here in Colorado Springs for retirement. I also want to mention that my appointment at National Jewish Health was impressive. I liked the staff and the facilities and every appointment was ON TIME! I'm not kidding either.

On a lighter note, today I took my two younger boys to the Air Force Academy for bowling. We had a great time as usual but what was amazing was my bowling. My second game I bowled four consecutive strikes plus another three during that game. My personal best as well as the score - a 190. I don't bowl but I guess the ball I was using was magic. The bowling did tire me but I kept the oxygen going between bowls.

Well that is it. I have to get back to my research paper. If I didn't mention it before, I am working on my graduate degree online with University of Maryland University College.

More Appointment Updates

Thursday I went to behavioral health on base and the doctor and I agreed to increase my Lexapro from 20 to 30 mg daily and to increase Ativan to 2mg at night to help me sleep and for anxiety issues. I have been feeling pretty good overall but I am getting a bit edgy again, most likely because of the news of lung disease, etc.

So I also saw the pulmonologist here in the Springs. My pulmonary function tests were the same as my last visit to his office, indicating my lung capacity is still 43% of full capacity. The doctor is happy I have not gotten worse but said that level is still indication for concern. He said I am too healthy for a lung transplant now but he believes it is a matter of time before it would be necessary. I guess I will find out more next Friday when I go to National Jewish Health to see the lung transplant specialist.

Oh, and the best thing is that I am now tapering my prednisone from 30mg daily to 20mg daily. Those levels are still much higher than what the human body naturally produces but less is good because it affects my mood, body weight, and who knows what else.

Lung Specialist Consultation Delayed

Just to give you a quick update... I was scheduled to see a lung transplant specialist yesterday for some tests and consultation at National Jewish Health in Denver; however, the doctor had a family emergency so my appointment has been delayed. We are disappointed because it is not easy NOT KNOWING. I mean, I know my lungs are not perfect. As of the last pulmonary appointment several weeks ago I was told my lung function was improved but still serious. But is that "serious, you will be on oxygen for life", or "serious, you have less than two years on those lungs", or "its a miracle, your lungs are getting better."

Overall, I have been feeling pretty good, with some bad days thrown in there periodically. Yesterday I felt miserable but today I feel good. The prednisone steroids, although not good for my bones, have certainly improved my appetite. I now weigh 160 pounds, I have the round prednisone face, and I look pregnant (due in a couple of months). It hit me very quickly by surprise but I am now trying to tackle it. I try to walk at least 30 minutes each day, started stomach crunches, and have ditched the pound bags of spicy drops I have been so fond of. I have even backed off of my nightly dose of ice cream.

I guess that is about it for my update. I have several appointments next week so maybe another update next weekend.

David

MyCMLCare.com

Bristol-Myers Squibb has announced a new website that offers a great resource of information and some nice tools for tracking treatments and side affects. I highly recommend adding www.mycmlcare.com to your favorites or bookmarks.

Bristol-Myers Squibbs 6 July, 2009 Press Release

Patents promote innovation

The following is the opposing view from USA Today, June 16, 2009. USA Today's view can be found as my previous posting.

Opposing View: Exclusive gene-based rights spur vital research and development

By Jim Greenwood

Can a gene be patented? The easy answer is this: Genes as they exist in nature cannot be patented. No one can patent a naturally occurring gene or protein as it exists in the body.

Here's where it becomes more complicated: Researchers can isolate a protein or DNA sequence that can help treat or potentially cure a disease, like cancer or heart disease, and they can patent this discovery. Many, if not most, human diseases have their roots in our genes. More than 4,000 diseases are suspected to stem from mutated genes inherited from one or both of our parents.

Armed with this knowledge, scientists have developed more than 200 innovative new therapies and vaccines that have helped extend and improve the quality of life for hundreds of millions of patients. Researchers, for example, located the gene responsible for cystic fibrosis, then used that knowledge to create therapies that have extended the average lifespan of a person who has CF from 12 years to more than 40.

Like all other patents, gene-based patents protect the intellectual property of a scientist, researcher or biotech company, spurring investment in research and development. The Patent and Trademark Office has strict guidelines on patents, including the patenting of DNA molecules or genetic material.

Two recent studies, from the American Association for the Advancement of Science and a Department of Health and Human Services advisory committee, both confirm what a prior National Academy of Sciences report concluded: Patents do not hinder biomedical innovation. The HHS panel's study also found that patents are not the cause of access-related issues regarding genetic diagnostic tests, in particular.

Public debate over access to, and use of, genetic technology is a good thing. It requires the consideration of many factors, including coverage and cost, concerns over genetic discrimination and myriad regulatory issues.

Even so, banning patents on gene-related breakthroughs would slow biomedical innovation to a halt — taking away the hope biotechnology offers to patients suffering from debilitating diseases such as cancer, Parkinson's and HIV/AIDS — while doing nothing to address what is really a much more complicated set of issues.

Former representative Jim Greenwood, R-Pa., is president and CEO of the Biotechnology Industry Organization.