Finance Bob's War against cancer
$4,085 of $15,000 goal
Myelofibrosis (MF) is a classified as a blood cancer. The cause is unknown. It is thought to be present in about 20,000 people in the USA; since this number is so low, the World Health Organization has classified it as a rare disease. However, we are starting to learn more about it, and realizing that it might impact many more patients.
MF typically presents with a couple different symptoms, and is very difficult to diagnose correctly. The two symptoms that usually present as definitive are a massively enlarged spleen, and wildly variable blood counts. The patient will suffer from a variety of secondary symptoms (fevers, sweats, chills, debilitating fatigue, cognitive dysfunction) and may well experience significant and severe organic damage (heart attack, stroke, cirrhosis of the liver, internal bleeding); if left untreated, the patient will typically die.
I have many issues. I have severe cirrhosis of the liver; an enlarged spleen; portal vein hypertension; significant connective tissue morphing into bone; and the list goes on. This is just the organic damage caused by the cancer secondarily.
There is no remission phase for this cancer.
There is only one FDA approved medication that was developed specifically to treat this cancer; other drugs might be used to treat some symptoms, but this approach does not treat the cancer itself.
There is only one treatment at present which might lead to a cure: a stem cell transplant from a closely matched sibling. Such transplants involve very lengthy and difficult recovery periods; compared to treatments for other cancers, they have a low success rate; they are suitable only for a small subset of patients; and finally – they are very, very expensive.
Awareness of treatment protocols is lacking. Not only are patients told (as I was) to go home, take it easy, and let death come peacefully, but hematologists don’t realize that this type of cancer requires vastly different treatment protocols from other cancer, including hematological cancers such as leukemia. For example, when taking the one FDA approved drug for myelofibrosis, the patient will, 99% of the time, see a dip and subsequent trough in certain blood counts happen nearly immediately.
In every other blood cancer, this is an indication of bleeding, typically “hidden” internal bleeding and possibly even a stroke, and requires specific treatment to identify and/or just stop the bleeding. However, in our case, this dip and trough are normal side effects of the way the drug works in the body, and treatment is not required. Within a few months, the patient’s counts will climb back to their normal on their own.
Many hematologists are unaware of this.
This lack of awareness is a direct result of current educational practices in medical school and residency. Hematologists and oncologists receive, at best, two days of classroom training on these cancers in all medical schools. This is not nearly enough for doctors to know techniques to best treat patients; none of the standard hematological practices apply to these cancers.
Awareness must also be raised among the "average persons". When I was diagnosed, it was by complete accident; I was rushed to the ER because I thought I was having a heart attack. My case is not an outlier: most patients who I meet are diagnosed secondarily, because some other symptoms suddenly arose. In the case of one young man I know, he was finally diagnosed because of persistent erectile dysfunction!
Of course, raising awareness is not nearly enough. In 2015, I joined a clinical trial for a new, cutting-edge drug called pacritinib. This drug, if approved, would only be the second drug approved to treat MF. When I was part of the trial, the FDA temporarily halted it; that left quite a few patients who were responding to the new drug in a bad position. Suddenly, their treatment was gone. Remember: this is life or death – and suddenly stopping this type of drug was known to cause severe side effects, including death.
Place your hands together, as though you were going to clap them. Now, move them apart in a clapping motion by about 3".
There is plenty of room in the wound cavity to perform that motion.
How long will it take to heal? I think that it is a race between the wound healing and my death. More than that is quite simply, too subjective and impacted by too many variables to understand.
I sincerely hope that all is well with you and yours.
As I've written, I've had problems with strength, pain, and stability in the left hip and leg for some time. This has gotten progressively worse until a couple weeks ago the left leg would just give out with no warning, and I would have to lower myself as best as possible to the ground.
I went to a variety of doctors. They all said basically that I shouldn't worry, that it would heal. It never did.
Finally, it got to the point where I just couldn't cope with the intense pain and inability to walk. We went to one ER, same story "Oh, it's just a bruise. You'll be fine."
Went to another ER. The wound surgeon took one look at me and said "Surgery. This is really bad." Long story short, he debrided the area, and remove two liters of fluid from the leg. That's a lot of fluid!
I'm just out of the hospital, and just taking my first steps. I have a unit that applies constant suction to the wound to remove any drainage, and I'm spending the bulk of my time in bed. I'm trying to follow a recovery schedule.
The wound is 7.5" long, and a few inches deep.
If there is any help you can give me, please, please do so whether it be financial, sharing this update everywhere you can, or even just dropping me an email with some encouraging words. Any and all help will be greatly appreciated.
Doc RD looked at me, put her hand on my arm, and said "Oh, honey It wasn't just him; every doctor in this hospital thought you were going to die the first week here."
Well, OK then.
I woke up last night, late, screaming; pain emanating from the incision for the drain to get rid of the septic fluid hiding behind the spleen.
Noticed today that the waste bag was not trapping much, and did a closer inspection: my entire side was dripping with pus. Apparently, I shifted the drain tube in my sleep, and as the liquid flows out, it misses the drain and heads for the incision.
We cleaned it. Three hours later, my side was again coated with pus. This time we cleaned it, and then reinforced their bandage by taping it down.
I just might have to visit the ER tomorrow.
Bladeforums should be ashamed. I'm deleting my account.
So while I can see why BF may not want to support every cause every person brings their way, it's not the first time I've heard this "blowing up" complaint form the owner over there. I get that deciding when and how to do this can be hard, and it may even put BF in a tough position is some charitable thing turned out to be a scam. All that said, it doesn't seem unreasonable for them to at least get back to you. I'll go drop a note over there. They can slap my hand or boot me out if they feel it's warranted.