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My name is Dan, I'm 61 years old, and in December 2009, I was diagnosed with myelofibrosis.
I have a wonderful life. I have a terrific wife Carolyn, she's the love of my life. We've
been best friends, and business partners, for 42 years. I have a daughter who's 33 years
old. I love to golf. I'm an avid and afflicted golfer. I've been very blessed in every aspect.
He's a wise, sweet, affectionate, wonderful person.
The beginning of my symptoms were itching, night sweats, but I did not realize that they
were symptoms of anything. They had been going on for, possibly, a number of years, prior
to realizing that there was an issue. When I would get out of the pool, or out of the
shower, for about 10 or 15 minutes afterward, I would itch. I would have night sweats, I
didn't want any covers on me when I would sleep. But I didn't think about that as anything.
I remember watching him just sit on the sofa in the wintertime watching TV and I would
look at him, he would just sweat. He was just hot. I thought, "What's wrong with you, it's
wintertime." Now when I think back about that I'm thinking, "That was a symptom, we just
didn't know." I noticed that there was a mass in my upper
left quadrant, and didn't know what that was, and didn't say anything about it for a good
while. But then whenever I felt it a little bit more, I realized that I needed to tell
somebody about it, so I talked with Carolyn. It was just an awful feeling. You try not
to panic but it was a mass, he had a mass and I had to think it might be something really
bad. She made sure I got to the doctor really quick
the next day that's when through the testing they discovered that I had polycythemia vera,
which then ultimately became myelofibrosis. I found out in this process, that the itching,
the night sweats, a little bit of bone pain, that those were, in fact, symptoms of that
disease, not realizing that at the beginning, of course.
The diagnosis was one of the worst that you could receive.
The most difficult part emotionally, of course, was at the point of myelofibrosis diagnosis,
given that it was a secondary diagnosis to polycythemia vera, makes it a little bit more
aggressive. And then your life kind of takes on a different focus.
I just can't describe another word other than devastation.
What's the next step? What do we need to do? What's available? What's out there? Then the
hard part was, that nothing was out there. For myelofibrosis patients, there has really
been nothing. At that point that my diagnosis changed, was
when this drug study opened. Incyte was developing this new drug that was playing a role in myelofibrosis.
That drug study opened at that moment, and I managed to get in the study.
I can tell you right now, when they mentioned clinical trial for a possible medicine to
help myelofibrosis, it was pretty close to excitement.
We were looking at this as hope, we weren't looking at this as well do I want to participate
in this experiment. Not at all, this was that straw and we were going to grab onto it as
much as we could. Dan participated in a Jakafi study. Jakafi
(ruxolitinib) is a prescription medicine used to treat people with intermediate or high-risk
myelofibrosis, including primary myelofibrosis, post--polycythemia vera myelofibrosis, and
post--essential thrombocythemia myelofibrosis. Jakafi has been proven to reduce the enlarged
spleen and helps improve certain symptoms of MF.
In the study Dan participated in, almost half (42%) of the people taking Jakafi had a 35%
or greater reduction spleen size after taking Jakafi for 6 months. In the same study, almost
half (46%) of people taking Jakafi had a 50% improvement in their Total Symptom Score which
measured abdominal discomfort, early feeling of fullness, pain under the left ribs, itching,
night sweats, and bone/muscle pain. Individual results may vary.
When he started on Jakafi, we knew hopefully that one of the benefits of Jakafi would be
a reduction in the spleen. That's what we were hoping for.
Then whenever we managed to get into this study, and then realized what that drug was
doing, and then hearing and seeing what it was doing throughout the study, there's hope.
Jakafi brought us hope. That there is a treatment, that there is something that we can do that
may benefit us significantly. And now we've progressed beyond that. We've been on Jakafi
now for right at two years. I'm not experiencing the degree of symptoms that I was experiencing
in the past. I don't have the itching to nearly the same degree that I had.
I know that my husband has myelofibrosis. I denied it I think for a long time. I know
it's true, but I did deny it. So I have to accept the fact that my husband has myelofibrosis,
and according to what we know he will have it for the rest of his life.
I don't think about it much anymore. Now, when I say I don't think about it much, I
have cancer, and I can't escape that fact. But I don't have this hammer hanging over
my head, ready to fall. Jakafi can cause serious side effects including
low blood counts. Jakafi may cause your platelet, red blood cell, or white blood cell counts
to be lowered. If you develop bleeding, stop taking Jakafi and call your healthcare provider.
Your healthcare provider will perform blood tests to check your blood counts before you
start Jakafi and regularly during your treatment. Your healthcare provider may change your dose
of Jakafi or stop your treatment based on the results of your blood
tests. Tell your healthcare provider right away if you experience unusual bleeding, bruising,
fatigue, shortness of breath, or a fever. You may be at risk for developing a serious
infection while taking Jakafi. Tell your healthcare provider if you develop symptoms such as chills,
nausea, vomiting, aches, weakness, fever, or painful skin rash or blisters.
The most common side effects of Jakafi include dizziness and headache. These are not all
the possible side effects of Jakafi. Ask your healthcare provider or pharmacist for more
information. Tell your healthcare provider about any side effect that bothers you or
that does not go away. Before taking Jakafi, tell your healthcare
provider about all the medications, vitamins, and herbal supplements you are taking and
all your medical conditions, including if you have an infection, have or had liver or
kidney problems, are on dialysis, or have any other medical condition. Do not drink
grapefruit juice while taking Jakafi. Women should not take Jakafi while pregnant
or planning to become pregnant, or if breast-feeding. See accompanying full prescribing information
which includes a more complete discussion of the risks associated with Jakafi. The full
prescribing information can also be found at www.jakafi.com.
If I had to summarize my experience in taking Jakafi into one sentence, that sentence would
be, "Where I had no hope, I now have hope."