One of the many things I learned as a result of fighting AML leukemia is that leukemia is not a single disease. It is actually a catch-all category for many genetic mutations that are similar but do not all respond to the same treatment. As a researcher in Canada said recently in an article in the journal Cancer Cell:
“It’s important to understand that both myeloid leukemia and lymphocytic leukemia are a combination of approximately twenty different genetic diseases,” explained Sauvageau. “What we call ‘leukemia’ is actually the group of symptoms caused by these diseases. We thus had to test these 5,000 drugs on several AML subtypes in order to link each drug’s effect to specific genes.”
The first hospital that tried to treat me in Houston proposed to use two chemotherapy drugs that have been used to treat all AML leukemias for the past 40 years. The success rate in using those two drugs was very low. Unfortunately, most hospitals in the United States continue to use this “standard of care” in treating leukemia patients.
When I transferred to the MD Anderson Cancer Center, the first thing the doctors did was to perform a genetic test, a sophisticated chromosome analysis to tell them what specific mutations were causing my “leukemia” symptoms. I had five separate genetic mutations several of which placed me in the poor survival category. Certain mutations can be treated effectively with chemotherapy. Other mutations can only hope to be treated effectively with a stem cell transplant. Without the genetic testing performed by MD Anderson, my doctors might have believed that chemotherapy alone could treat my condition. With genetic testing, they were able to inform me about the poor outcome that I was likely to face with chemotherapy alone and helped me to decide to go forward with the more aggressive stem cell transplant.
As you might expect, genetic testing is more expensive and health insurance carriers are not keen to authorize it. If you’re a leukemia patient, both you and your doctor should be fighting for authorization to conduct genetic testing. My own insurance carrier refused to authorize genetic testing through a chromosome analysis. It took an appeal by my doctors and an independent review by a cancer specialist to convince the insurance company to authorize the chromosome analysis.
I celebrated my third birthday (post stem cell transplant) last week. On top of that, I got great news this week. My latest bone marrow biopsy results came in and they are NEGATIVE for minimal residual disease. That means no leukemia cells can be found in my bone marrow. That doesn’t mean I’m completely home free. There can and often are cases of leukemia relapse even years after a transplant. So-called “stealth” leukemia cells can linger or pop up in bone marrow long after a transplant as explained in this article. However, after three years without a relapse, the odds are beginning to be in my favor for the first time. Onwards and upwards my friends.
On this National Siblings Day, I want to thank those like my brother Mark who donated stem cells to help their siblings fight leukemia. Without you, we wouldn’t be alive today.
Richard and Mark LaGarde
My health continues to be good despite chronic problems related to my stem cell transplant. I got exposed to poison ivy several weeks ago while working in the yard. The inflammation set off a GvHD reaction which led to a skin rash across both arms and one of my legs. It took several weeks to get it under control with Triamcinolone steroid cream.
GvHD triggered by poison ivy
My latest CBC shows that my white blood and red blood counts are in the normal range. However, my platelet count continues to be low at 130k. Nothing to worry about. I just have to avoid cutting major arteries when I chop vegetables.
With news of the measles outbreak spreading to Florida, my oncologist warned me once again yesterday to avoid unvaccinated children. He said “The risk of catching measles or some other childhood disease is low. However, you’ve been through so much, why take the chance. You’ve been immunosuppressed for so long, if you do get exposed, you’re toast.” Well, that’s a happy thought.
My ocular GvHD continues to be a constant problem. I use about 15 containers of Refresh Plus eye drops per day. My health insurer recently discontinued approving Restasis for use in ocular GvHD cases like mine. From the studies I’ve read, it appears that the damage to the tear glands occurs soon after the stem cell transplant and Refresh has not shown to be much of a benefit for patients like me. For those of you preparing to receive your SCT, ask your doctor about a recent study to see if applying Restasis to the eyes before the transplant can prevent ocular GvHD. It’s worth a try because it is a major quality of life issue if you do develop it.
Chemo brain continues to be a constant pain in the rump. My short-term memory is lousy. Mary Pat has learned to be patient with me and I’ve learned to keep several Things to Do lists in progress at all times.
That’s it for now. Hope everyone is doing well. Onward and upward folks.
I am concerned for my friends and loved ones in Houston. The recent chemical plant fire in Deer Park has released a plume of smoke over the City of Houston for the past several days. That smoke likely contained some unknown levels of benzene. Exposure to benzene is one of the best known causes of leukemia. Having battled leukemia for the past three years, I am more than a bit concerned about the health of folks in the Houston area. We will not know for many years how many leukemia cases may have been caused by this event. In the meantime, here is a link to my webpage that discusses latency periods and symptoms of leukemia:
By way of a health update, my latest bone marrow aspiration and biopsies show that I continue to be in complete remission. Many thanks to the doctors, researchers, and staff at MD Anderson Cancer Center for giving me an extension on my lifetime contract.
Happy New Year to my loved ones, friends, and fellow Survivors. I recently got back from a quick trip to M.D. Anderson in Houston for my bi-annual bone marrow aspiration and biopsy.
Bone marrow aspiration and biopsy.
The good news is that there is no sign of a recurrence of the AML leukemia and my DNA is still 100% that of my brother Mark. I am blessed to have had access to the best leukemia and stem cell transplant doctors and medical teams in the world. I am also blessed to have had a wife who fought so hard for me and a brother who dropped everything to donate his stem cells.
As we think ahead to 2019, remember that there are a lot of folks who are just starting their battle with leukemia. My heart goes out to every one of them. The fear and confusion can be overwhelming when you get a diagnosis like that. All you can do is trust that your doctors and medical team are doing their best to help you survive. Don’t panic. Don’t give up. Keep fighting. Believe me, it’s worth it in the end.
Now I’ll share a quick update on my current medical condition for my fellow leukemia and stem cell transplant (SCT) Survivors. It’s always good to hear how someone else is coping with the side effects of a SCT.
I continue to have Ocular GvHD which means my new immune system continues to attack my eyes and tear glands. The condition leaves me with severe and painful dry eyes. I was lucky enough to get fitted for Prose lenses at Baylor University’s Alkek Eye Center in Houston. The Prose lens is designed to fit over the white part of the eye and to protect the cornea from ulceration due to dry eye. A recent video by Dr. Deborah Jacobs, Director of the Boston Foundation for Sight, sets out the latest medical information about Ocular GvHD. If you are a SCT patient who suffers from dry eyes, this video is worth a watch.
Shortly after my SCT, I developed a painful frozen shoulder syndrome in my right shoulder. My orthopod theorized that I had some sort of inflammation in the shoulder joint and that my new immature immune system was attacking my shoulder making it painful and difficult to use. After a steroid injection directly into the joint, my pain went away and I regained full use of my shoulder. Unfortunately, in the past month or two I have begun developing severe pain in my left shoulder. I am working to keep my joint limber by doing one hour of yoga and stretching exercises every day. If the pain gets too severe I will probably find a local orthopod who can give me a steroid injection in the left shoulder.
My overactive T-cells seem to bounce from attacking one part of my body to the next with no rhyme or reason. Their most recent target of attack seems to be my stomach and throat. Anything that causes inflammation, including alcohol or spicy foods, can set them off. That’s a double whammy for a guy like me who grew up in South Louisiana where alcohol and spicy food is a right of passage.
I’m still on the anti-rejection drug Tacrolimus (Prograf). It is designed to suppress my T-cell activity and lessen the symptoms of GvHD. A side effect is that it leaves you more likely to get viral, bacterial, and fungal infections. For that I have to take a daily antibiotic, anti-viral, and antifungal medication. I seem to get really sick whenever I travel by air or attend events with large crowds of sneezing and coughing folds. I spent nearly three weeks in bed last month after my flight to M.D. Anderson. I don’t look forward to the upcoming flu season. Are there any SCT Survivors out there who have been weaned off of your anti-rejection medication over time? I am hopeful that this will not be a permanent feature of life.
Lastly, I continue to be frustrated by Chemo Brain. My short-term memory is a wreck and absorbing large amounts of information in one sitting is difficult for me. That’s quite a change for me and it is hard to get used to this new reality. Mary Pat just shakes her head at me sometimes when I get spacey and forgetful. Thank goodness for Post It notes.
I wish everyone out there a happy, healthy, and prosperous New Year. Onward and upward my friends.
Stem cell transplant (SCT) patients like me have a host of things to worry about. First, we worry about relapse. We have a constant concern that our original leukemia, multiple myeloma, or lymphoma will come back. The only way to temporarily reduce that concern is to have periodic bone marrow biopsies.
Next, we worry about infection. Most SCT patients take an anti-rejection drug like tacrolimus (Prograf) to prevent our new transplanted immune system from attacking our lungs, skin, and other organs. The anti-rejection drug protects us from our new immune system by suppressing it. That makes us more likely to get viral, bacterial, or fungal infections. Those infections can spread quickly and kill us if not caught and treated early.
We can reduce the number of viral and bacterial infections by washing our hands frequently, and by avoiding sick people, crowded places, un-vaccinated children, pets, and mosquitoes. Airplanes and crowded hospital waiting rooms are almost guaranteed disease vectors for us. I seldom fly to Houston for visits to MD Anderson without coming down with an upper respiratory tract infection.
Most SCT patients take a preventative anti-viral medication and an anti-bacterial medication on a daily basis. I take valacyclovir (Valtrex) to reduce viral infections and trimethoprim/sulfamethoxazole (Bactrim) to reduce bacterial infections. I place emphasis on the word “reduce”. These drugs don’t prevent all infections. Most SCT patients know that an infection can overcome their reduced defenses quickly. I have been advised to always be close to a major medical center in the event I spike a fever. If I spike a fever of 100.4 degrees or greater, I am supposed to get to an ER within 30 minutes. That means hiking the Appalachian Trail is out, not that it was high on my bucket list. It also means that traveling to remote parts of the U.S. or to most foreign countries is off limits for SCT patients.
People who live in humid environments where mold is common may be more at risk. Even the soil in houseplants can increase the risk. As a preventative, Mary Pat and I have eliminated all houseplants from our house.
There are other precautions recommended for SCT patients by the CDC, including:
Try to avoid areas with a lot of dust like construction or excavation sites;
Stay inside during dust storms;
Stay away from areas with bird and bat droppings. This includes places like chicken coops and caves;
Wear gloves when handling materials such as soil, moss, or manure; and
Wear shoes, long pants, and a long-sleeved shirt when doing outdoor activities such as gardening, yard work, or visiting wooded areas.
I had a scare about a possible fungal infection over the past month. My dentist took a CT scan of my jaw and noticed that my right maxillary sinus was nearly completely blocked. He recommended that I see an ENT. When I showed that CT film to the local ENT in Naples, he remarked that he saw a white fluffy mass in my right sinus that might be a fungal ball. He recommended surgery to remove the infection and to clear the airways. Think of it as a “roto-rooter job” for the sinuses. A quick look at a YouTube video (Warning: Not Suitable for the Squeamish) of removal of a fungal ball from a maxillary sinus caused me to panic. I contacted MD Anderson for a second opinion. My local ENT eventually concluded that the white fluffy image he saw on the dental CT was likely an “artifact” on the film because the dental CT was focused on my jaw and not my sinuses.
After a second sinus CT scan and genetic testing of a culture from my sinuses, the local ENT concluded that I do not have a fungal ball in my sinuses. After a third sinus CT scan at MD Anderson, the Houston ENT agreed that I probably have a chronic sinus infection. My immune system has apparently been unable to shake the infection. The sinus blockage is probably being caused by inflammation from that chronic infection. He strongly recommended against a “roto-rooter” surgery.
I have been on four different antibiotics prescribed by the local ENT over the past month. My local ENT also recommended that I use Flonase spray. However, the MD Anderson ENT who is more experienced in treating SCT patients warned against that. He says that the steroid in Flonase reduces the immune response in the sinuses. For an SCT patient who already has a suppressed immune system, the steroid would make a fungal infection more likely. Instead of Flonase, I am supposed to use saline sinus rinses and Afrin spray for two to three days maximum to clear up any severe congestion.
Part of the panic over the past month was due to a lung CT scan taken in Naples. That scan showed granulomas scattered all through my lungs. Granulomas could be caused by cancer or by a fungal infection. That set off alarm bells for me as well as my SCT doctor and his staff in Houston. I was sent to an infectious disease doctor at MD Anderson for a consultation. He had me undergo yet another chest CT scan. When he compared that new scan with an old scan he saw that the lung granulomas were present in 2016 and there has been no change in their size or location. The granulomas were most likely caused by a fungal infection that pre-dated my stem cell transplant. I suspect my leukemia had something to do with that.
Don’t get me wrong. I’m not complaining. I share the story of what I’ve been through to help other SCT patients know what to look out for. All of these non-stop medical exams and treatments are a small price to pay given the alternative. Onwards and upwards my friends.
If you are a leukemia patient or a stem cell transplant patient, you know that your immune system is compromised and one of your biggest threats is the flu virus. This flu season is more virulent than any in recent memory. It seems that every time I walk into the waiting room at MD Anderson Cancer Center, half the patients and caregivers are coughing and look miserable.
My doctor advised me to act as though every surface, door knob, and light switch I touch is covered in flu droplets. If you put your hands up to your face, eyes, nose, or mouth, the likelihood is that you have infected yourself.
The only tool in our arsenal to stay healthy is to stay away from crowds of sick people, especially children and the elderly, and to wash our hands frequently and use hand sanitizer as often as possible.
I have been taking high-dose prednisone these past six weeks while battling ITP. Steroids can be a wonder drug but they are designed to suppress the immune system. My timing could not be better. Let’s see. How about suppressing your immune system just as one of the worst flu seasons in history is getting started. Brilliant!
Mary Pat and I have isolated ourselves in our little temporary apartment. We go out only for long walks around the Rice Village area of Houston. (When she pushes me to walk longer distances, I aggravate her by humming the Colonel Bogey March from the movie Bridge on the River Kwai).
We have stopped eating out at restaurants because so many of the restaurant workers are showing signs of the flu. Unfortunately, many of them can’t afford to stay home for weeks to get over their symptoms. If we order take out food, we nuke it in the microwave to make sure it is safe. As much as we could use some human contact and laughs, we have politely turned down invitations from friends to go to their houses for dinner.
I may be acting paranoid but so far our little survival plan has worked. We are both still healthy and I don’t have any signs of the flu or any upper-respiratory infection despite my compromised immune system.
There was an article in the New York Times yesterday that described how you can survive the flu if you are one of the many unfortunates. The best advice is to stay hydrated and to avoid lying flat for long periods of time.
I learned that lesson while undergoing chemotherapy and my stem cell transplant at MD Anderson. One nurse explained to me that when you are lying flat in the bed, your lungs tend to collapse and fluid builds up. Bacteria love to grow in a wet environment so pneumonia often develops in those who stay in bed all day. If you get up and walk around, your lungs expand and you naturally work the fluids up out of your lungs leaving few pockets of fluid to incubate the bacteria.
I saw the wisdom in that advice immediately after my transplant. The patients on my floor who got up and walked around the halls dragging their IV poles behind them got released early and were healthier looking. The patients who remained in their beds looked awful and by the end of my stay, it looked to me like a high number of them were not going to make it.
I hope all of you survive this flu season. Remember, it’s better to act paranoid than to end up on a ventilator!
On a lighter note, my dose of steroids has decreased from 100 mg per day to about 40 mg per day. My latest platelet count was 52k so it is at least stabilizing. Our hope is that I can maintain my platelet levels with the help of the eltrombopag (Promacta) as I come down off the steroids. If so, Doctor C will probably release me and we can get back home again.