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.

Government awards patents for Genes, stiffling research

My mother gave me a USA Today newspaper clipping from June 16, 2009 of the following articles, which we thought were interesteding. This is the view of USA Today and the opposing view will be on my following posting:

Our view: Private interests shouldn’t control rights to features of natural world.

In 2006, Genae Girard, then 36, was diagnosed with Stage 2 breast cancer. She had a lumpectomy and chemotherapy. Then she underwent testing for mutations in the BRCA1 and BRCA2 genes linked to breast and ovarian cancer. Girard tested positive for BRCA2 and elected to have a double mastectomy and then a hysterectomy. As she made these wrenching decisions about her health, she collected second opinions at every step of the way except one — the BRCA test.

The reason: One company, Utah-based Myriad Genetics, owns the patent to the BRCA genes.

(Girard: Couldn’t get second opinion on a cancer test./ACLU)

Say what? Yes, the U.S. government grants patents to DNA sequences, the stuff of life. About 20% of the human genome has been patented.

One consequence of such patents is that only Myriad can test for the BRCA mutations. So, no second opinions. Plus, without competition, Myriad can charge more for tests. At more than $3,000, the tests are prohibitively expensive for many women, and not all insurance companies cover them.

Pharmaceutical companies have long used patent protection to recoup the costs of investment and to make initial profits on drugs. Fair enough. Unlike drugs, though, genes are features of the natural world. The biotech industry argues that by taking genes out of the body and isolating them, scientists are creating something that does not occur in nature and therefore can be patented. This, however, is like arguing that gold can be patented when it has been taken out of a mountain because it's no longer "in nature."

The problem began with a 1980 Supreme Court ruling on the patenting of biological organisms. Since 1982, based on a questionable interpretation of that decision, the U.S. Patent and Trademark Office has granted tens of thousands of patents for human genes and gene-related products.

Many of the patent holders allow virtually unrestricted research. But a few companies are aggressive about prohibiting others from profiting from research on their patented genes. That inhibits scientific inquiry.

Efforts to change the situation are underway in the courts and Congress. The American Civil Liberties Union, along with a non-profit organization, filed a lawsuit last month that challenges the patenting of the BRCA genes. On Capitol Hill, Rep. Xavier Becerra, D-Calif., is promoting legislation to bar gene patenting, which, he says, is "equivalent to patenting water, air, birds or diamonds."

It is possible that other solutions exist, short of a complete ban. The scientific world tends to be one of collaboration, not competition. But without strict curbs, for-profit companies such as Myriad — which declined to provide an opposing view to this editorial — too readily can use patents to slow and restrict research as they maximize revenue. (There might be "myriad dollars to be made in Myriad," CNBC's Jim Cramer said on his stock-picking show last week.)

Even though Girard has taken the most drastic steps to prevent her cancer from spreading or returning, the BRCA2 gene runs in her family. If one company continues to have a lock on it, that makes it more difficult to achieve Girard's wish: to make it easier for others, including her niece who might also carry the gene, to make better informed decisions about their own health.

Visit with the pulmonologist

I got in for a follow-up with the pulmonologist yesterday and started with another complete pulmonary function test. The doctor told us my lung function is much better than when he saw me in the hospital over a month ago. My wife said, "yeah, David was really sick back then." The doctor then said, "yes, he was dieing, his lung function was so bad." My wife knew how bad I was in the hospital but I was so out of it that I cannot even remember half of what the doctor had told me. Until recently, I really didn't realize just how serious this bronchial obliterans (BO) is.

So the doctor said I have improved significantly in the past month; however, my lung function is still seriously low. He said I am operating on the capacity of one lung. My air stats are remaining above 90 at rest or slow walk. So he told me I can come off the oxygen when sitting around the house and if exerting myself, such as long walks, hills, stairs, etc., then I need to be back on the oxygen, but at a lower setting than before.

He told us again how the lungs are "stupid" organs that do not respond well to treatment and don't regenerate like other organs do. He advised we contact the Fred Hutchinson where I had the hematopoietic stem cell transplant (HSCT) for a consultation with a lung transplant specialist. He believes the chances of eventually needing a transplant are good and said it is better to be plugged into a system now rather than waiting until the last minute. He told us there is usually a narrow window for a lung transplant between when the lungs are bad enough that a transplant is needed and when the patient is too ill to be able to survive such a procedure.

Seattle Cancer Care Alliance has some interesting information on their website relevant to HSCT recipients with chronic graft versus host disease who are then diagnosed with BO. They state that 30 to 60 percent of HSCT patients develop some kind of lung problems. There is another good article at nature.com that goes into detail the issues of lung problems in relationship with GVHD after HSCT. They say the mortality rate for lung transplant recipients with BO is 61%. And according to Dr. Suckling, our pulmonologist, with BO you are on the clock, with seven years typically being on the optimistic end.

So I am in remission for leukemia but this thing is still trying to beat me down. Although the steroids are making very irritable, cranky, grouchy, and a number of other adjectives my wife tends to use, I am trying my best to maintain a positive attitude and take it one day at a time.

My advice to those of you have had, or are contemplating having, a HSCT, is to make sure when you get home after the procedure, and are being seen by your local doctor, that you are getting pulmonary function tests performed every three months during the first year post-transplant, every six months during the second year, and annually thereafter. If you read the articles I mentioned above then you will find it is very difficult to detect BO until it is severe, which is what has happened to me. Even chest x-rays don't pick it up. I had four of them during the months before I was recently hospitalized and nothing looked abnormal until the chest x-ray done while in the emergency room, which the doctor said the lungs looked elongated, similar to what they might look like if I were asthmatic, which I am not.

Well take care and thanks again for the support and prayers.

David

P.S. If you have anything to share that would benefit other CML or HSCT patients, then please leave your comments via this blog. I often get great emails from people with their own share of GVHD issues, medication side affects, etc. that I think others would love to hear about. So unless your privacy is the concern, please feel free to comment via the blog. I do check them and will respond where needed or requested. Thanks.

O2 Update

I have been home from the hospital now for almost two weeks. I am now on oxygen most of the day and while I sleep. Without it I still get winded walking around the house and especially using the stairs. I am on prednisone steroids again, anti-biotics, and several inhalers. My appetite has improved tremendously because of the steroids and I gained seven pounds in a week. During the first week I was actually getting up at about 1am and eating an entire meal, but I couldn't sleep either. Sleeping a bit better now.

So I am feeling better at the moment but I am still pretty much stuck to the house, needing to drag small oxygen tanks with me if I go out. My insurance company has finally approved home visits from a nurse to monitor my progress. The nurse has also recommended getting me home physical therapy to increase my strength, which I agree will help.

My sister, Lisa, and brother, Stephen, flew out from California to spend some time with me and help out and I have really enjoyed their visit. And my mother-in-law flew out from Ireland for a couple of weeks. It is always great to see Elinor.

I should have another update in several weeks after another pulmonary function test of the lungs. I have received emails, phone calls and cards from so many of you and my family and I really appreciate your kindness.

Here is a picture of me outside my new favorite place.