Myelodysplastic Syndrome (MDS) Videos - Kirby S



Watch as Kirby S takes us through his journey with myelodysplastic syndrome (MDS).

Do you have experience with myelodysplastic syndrome (MDS)? Join now to share your journey!

Video Transcription

Dealing with Anxiety

Anxiety is always a concern with cancer patients, I think, and depending on how well the drugs are working at the time and when we're changing to other drugs, you're always anxious as to whether they're going to work or not. But by just doing your best and trying to stay positive, you can offset the effects of anxiety.

Change in Appetite

My appetite stayed the same during my cancer treatments. Because my chemotherapies are oral and the injected ones are low dosage, I haven't had an impact like many chemotherapies do on diet. I've actually gained a little weight during my fight with MDS, so appetite has not been a problem at all.

Coping with Change

When one is diagnosed with cancer, many changes are thrust upon you. I think communicating with your mate, your doctors, your nurses, your friends can help you in battling these diseases. Coping is a difficult situation, but your friends can help you to do that. Also, studying medical journals and other information on the Internet can help you become more empowered to understand your disease better. I really think this is important and would encourage anyone who has one of these bad diseases to learn as much about it as they can because that helps, me in my case, at least, to deal with the disease in a better fashion.

Diagnosis

My primary diagnosis is MDS, and I had excess blasts, which put me in an intermediate risk category. When I did research on the Internet, I found this was a very risky disease, and I wanted to get treatment. Within two months, the diagnosis had gone to the highest-risk MDS category, and I was only, by statistical results, given only two to four months to live.

Financial and Out of Pocket Costs

Cancer can always affect your life economically. Fortunately, I had good medical insurance in my retirement from the company I had worked for. Also, on Medicare and with a good supplemental insurance, the economics of the cancer have not been too bad in my case. Some of the oral drugs you take are very costly under the Medicare Part D, but you'll find there are copay-assistance programs available through some wonderful organizations if you'll search for those.

Fear of Cancer

When someone's diagnosed with cancer, they always have a fear of it. And I think one of the most important things you can do is be positive, take each day one day at a time, and be as positive as you can in fighting your disease, and this will help you to deal with it with less anxiety.

Gifts for Cancer Patients

I think that some great gifts for people with cancer include, first of all, a good report whenever you're getting your blood counts. When you get a good report, it's always a joy. If it's not so good, you just have to kind of go overcome that and keep going on. Also, having wonderful friends and a family that you can be with is very important. Another thing would be to take a vacation or a trip if you can. Maybe take a trip to one of the places on your bucket list that you're able to travel to and enjoy that. I think one of the most important things is to be with your family, your children, and your grandchildren. I try to do as much with my grandchildren as I can to involve them in my life.

Life Before Cancer

Before my diagnosis with myelodysplastic syndromes, I was a very healthy man. I had never spent a night in a hospital, and I was active and able to do everything I wanted to do.

Cancer Limitations

Before my diagnosis with MDS, my wife and I loved to travel. We traveled overseas and throughout the country. We had a camper. And we loved to do that with our friends and family. Once the MDS became a little further progressed and we had to do blood counts on a weekly basis, we had to stop doing that. So that was a little bit of a disappointment not to be able to do those things that you were able to do before. One can travel some, but I've had to limit my travel very extensively. Another thing, I was always a handyman around the house and would repair things, my car, my camper, different appliances, and I've had to kind of give that up because your physical strength doesn't permit you to do the things you did before. So all those things are a little disappointing, and you have to come to grips with the fact that I can't do that anymore but I'm not going to let that overcome me and make me too unhappy. So just do what you can. Always stay positive.

Lowest Point

The lowest point in my MDS journey was about two months after being diagnosed. I had been unable to participate in a clinical trial and we were told that we should go home and be close to our friends and get things in order. So it appeared at that time there was no good treatment for my disease. But, again, studying the Internet and returning home, I found a wonderful doctor and we were able to start the treatment with thalidomide and I had very good results. So I got through that low point. Again, we tried to stay positive, be with our friends. Don't forget the power of prayer in dealing with all these situations. So that was the low point. Since then, I have done very well, and while there's been occasional downturns, we've been able to get through those. Following the low point, as I've been treated over the years, I found it's like a roller coaster ride. You'll have real highs when your counts are good, you're responding good to the medication. When the drugs seem to lose their ability to work and you may have to change, then it's kind of like you're going downhill and you're hoping there's an uphill portion to come. And so I've been through several of these up and down roller coaster rides. So to me it's always kind of like you're riding a roller coaster, but try to stay positive and there will be another hill to get you high in the future.

Metastases

MDS and most blood cancers do not have solid tumors. So I am not affected by any solid tumors or pain associated with those. The cancer exists in the bone marrow, and sometimes it's called a liquid cancer or liquid form of leukemia.

Perspective on Life

Throughout my journey with MDS, my perspective on life, while it changes somewhat, i've always tried to stay positive. I believe in the Bible's hope of a resurrection and being able to live again. So I know even though the disease might progress and I may lose my life, I'm confident that I'll be able to have a wonderful future. There are a lot of immediate things that impact your life and your perspective. You can't travel as much as you did before. You can't do as many things as you would like to do. But, again, you must just stay positive, and one statement that I really like, one statement I heard recently that I like, it says, "Don't worry about the things you can't do. Just do the things that you can do."

Place of Care

I'm being treated at the Good Samaritan Outpatient Cancer Care Clinic in Cincinnati. It's a wonderful facility. Dr. Ranga Brahmamdam has seen me the entire time. I have a wonderful nurse there, Cindy Rae, who has been my primary nurse over the eight and a half years that I've been treated. They have a wonderful team of nurses there, and others fill in when Cindy's not available. I really enjoy having the same people draw my blood each week, and it's really been a great experience being there. I think having a good cancer-care team and a wonderful doctor means so much to helping you in your fight against any disease, any cancer that you face.

Questions for Doctor

If one has MDS or acute myeloid leukemia, you may want to ask your doctor what are the various options of treatment that you could receive. There may be clinical trials. There may be new drugs that are in research. So it's good to always ask and try to stay ahead of developments for these diseases if you can.

Quotes

Throughout my journey fighting MDS, several things have helped my wife and I to deal with this. One, of course, is the power of prayer, and there are certain Scriptures that we really appreciate. One particular one is by the Paul at Philippians 4: 6-7, and there he says, "Do not be anxious over anything but in everything by prayer and supplication along with thanksgiving, let your petitions be made known to God and the peace of God that excels all thought will guard your hearts and your mental powers by means of Christ Jesus." So prayer can provide a soothing relief when you're perhaps anxious about things. A favorite song that I've had over the years is an old one called "Smile," and it was rerecorded recently by Rod Stewart, and it's a touching album, not a rock song in this case. But, and also, Tony Bennett has recorded "Smile," so it's an encouraging song to listen to.

Side Effects

The side effects to these oral chemotherapy drugs I was taking, thalidomide and Revlimid-- I also have taken Dacogen, or decitabine, which is an injected drug. The side effects of these include neuropathy, tingling numbness in the hands and feet, which thalidomide especially is known to cause, and I've had this for the eight-year period, and it hasn't increased dramatically. It's at a level I'm comfortable with, but it's always there. Other effects seem to be fatigue and tiredness, even from the shots of Procrit and Neupogen, which are to stimulate the bone marrow to produce more cells. This tends to cause fatigue. But when the drugs respond and the hemoglobin levels get in the 10, 11s, and 12s, of course, one feels more normal.

Conditions and Treatments

I consider my MDS, myelodysplastic syndrome, to be in a controlled condition. It's not usually referred to as going into remission. MDS, if it gets worse, the blasts, or bad cells in the bone marrow, are used to determine if it's called AML or acute myeloid leukemia. In 2009, my blasts went over the 20 percent mark that defines where AML, acute myeloid leukemia, starts, so I am officially in acute myeloid leukemia and I also have MDS. The two are usually defined together in that respect.

Symptoms

Late in 2003, I had a routine physical exam, and when the results came back, it found that some of my blood counts were a little below normal. My doctor sent me to a hematologist, and they did a bone marrow biopsy and discovered that I had MDS, that my bone marrow had a bone marrow cancer in it.

Treatment Decisions

After immediately searching the Internet and learning how serious this disease was, we wanted to get treatment, my wife and I, immediately. I didn't want to just watch and wait for the disease to progress. A local doctor that I had first seen was unwilling to do much other than watch the blood counts. I was not satisfied with this, so I looked for trials and other ways to treat the disease. At that time, there were no drugs available directly for MDS. You had to use off-label from other drugs used in other cases. I was rejected for a trial at the University of Arizona for a drug because I was considered too high-risk at the time. Returning to Cincinnati, we found a very good doctor and clinic at the Good Samaritan Outpatient Cancer Care Clinic. Dr. Ranga Brahmamdam agreed to treat me. He's been a wonderful doctor. And he used the drug thalidomide, which had been used for other bone marrow cancers. MDS patients using this drug respond in about 20 percent of the cases, and after four weeks, my blood counts started to improve and it really worked well for me. So we were very pleased with that. I was able to conveniently use thalidomide for two and a half years, and then it started to lose its efficacy, or ability to control the disease. I then changed to a newer drug, Revlimid, which had been developed and was now approved for use with MDS. The Revlimid, again, worked well for me, and I, for 18 months, I utilized this drug. So I was really fortunate to have a very good response to these different drugs. We also use Procrit and Neupogen to boost the red cells and white cells as the need would occur, and I did have a good response with these medications also. I am now an eight-year survivor of MDS, and over the years, we've changed drugs several times. Fortunately, I seem to be able to respond and have even been able to go back and reuse a drug that had been used in previous years. So my advice is try to find the doctor who will treat you and don't give up. Just keep trying the different drugs.

WhatNext

I have kept a written journal of my disease over the years, and I feel that writing down what's happening, it empowers me to feel more in control of my disease. I also chart numbers and keep graphs on it. Another thing that helps is websites like WhatNext, the Aplastic Anemia & MDS Foundation, and also the MDS Foundation. All of these let one get in touch with other patients having their disease or similar diseases. I've also volunteered to talk to other patients after they're diagnosed if they want to talk to another patient who's had good success fighting the disease, and I've enjoyed talking to them and emailing to them over the years.

Patient Doctor Relationship

Finding an oncologist that you're comfortable with is very important. You may have to actually interview several doctors and see, to see how they might want to treat the cancer that you have and if you're comfortable with them. I have a very wonderful relationship with my doctor, Dr. Ranga Brahmamdam, and we're able to communicate effectively and listen to each other, and likewise with my nurses and other ones that care for me at the clinic. Sometimes if things aren't going just right, you may want to get a second opinion about your disease, and it's important that your doctor is comfortable with this. So if the particular doctor you're seeing isn't comfortable with letting you get a second opinion, you may need to find another doctor who is. We were able to use an expert in MDS at the Cleveland Clinic, and Dr. Ranga helped apply what he was recommending also, so that teamwork has really helped me to have a successful treatment of MDS, much longer than one would normally expect.