If you're visiting this blog page then you already know that Ray was diagnosed with Myelodysplastic Syndrome (MDS). This blog is to journal the trip that we now find ourselves on in dealing with this little known disease. We had never heard of it but now we are consumed with finding out all we can about it. In an effort to keep it all straight in our own heads AND to allow folks that want to know more about what's happening with the treatment plan & how we're handling it all, this blog is for that purpose. I shall attempt to keep it as up to date as I can as we progress through the medical & emotional aspects of it all.
What is Myelodysplastic Syndrome (MDS)? The following link will explain it better than I can: Click here to learn what MDS is Basically it is a blood disease that affects the bone marrow and blood. Some types of MDS are mild and easily managed, while other types are severe and life-threatening. Mild MDS can grow more severe over time. It can also develop into a fast-growing, severe leukemia called acute myelogenous leukemia.
How did we discover that Ray has MDS? Well, about seven years ago during a routine annual exam, the doctor said his blood work showed that he was anemic & sent him to a specialist to get checked out further. That doctor suggested that he have a bone marrow biopsy then but Ray refused. So every year after that, his annual blood work continued to show the same thing, but we didn't worry. He felt fine. However, this past Spring his blood work showed a drastic change from the previous year & his doctor scared him into finally getting the bone marrow biopsy, pointing out that he could have cancer! He relented & scheduled the biopsy.
On June 25th, 2012 we were told that he has MDS & he was started on a drug called Revlimid that supposedly been proven to help in some cases. It is mostly prescribed for patients that also have the chromosome 5q deletion, which Ray has. He felt like he was signing his life away with all the paperwork he had to sign to get the drug. And the possible side effects they tell you about it are quite scary. You cannot just go to the local drugstore & pick it up. It is sent directly from the pharmaceutical company. Fortunately our insurance covered most of it. The cost for 30 pills runs between $5,000 & $8,000.
Wouldn't you know, after being on the drug for just a month, it landed him in the hospital with multiple blood clots to his leg & lungs! He also was experiencing constant diarrhea & bad muscle cramping. However his doctor felt that he needed to remain on the drug & give it a chance to do some good, so he prescribed coumadin to hopefully counteract the clots. The other side effects continued but Ray handled them pretty good. He didn't let it slow him down one bit!
In late October 2012 he had a second bone marrow biopsy that revealed that his blood was steadily getting worse & the Revlimid drug was stopped. We headed south for the winter with the name of a specialist at the Moffitt Cancer Center in Tampa that would be taking over his case.
On November 21, 2012 Ray had his 1st visit with Dr. Rami Komrokji at the Moffitt Center. We were both very impressed with the doctor and the facility. We were told that along with the chromosome 5q deletion problem that we already knew about, that he also has a 17P & p53 chromosome problem & that the 17P is a really bad one to have with the MDS. In fact, according to the doctor it's fairly rare with approximately only 2% of his MDS patients having it. Just great! NOT!
Last week on November 30, 2012 Ray had his 3rd bone marrow biopsy so that the doctor can evaluate any changes in his tests over the last month before discussing the treatment plan. We meet with him tomorrow to discuss how we're going to attack this disease. We meet with the bone marrow transplant specialists next week to discuss that option. The ONLY cure for MDS is the transplant process but it is very extensive & very scary to contemplate. The risks are high. The following link will explain the process: Click here to learn the transplant process
The really strange thing about all this is that Ray feels perfectly fine! His energy level is okay & he continues to do whatever his wants. If it wasn't for the blood work & bone marrow biopsy results, we would have no idea that anything was wrong. That is really baffling the doctor's who are amazed that he isn't showing any visible outward symptoms. Right now our biggest concern is that his immune system is near zero! He's been told that it might be a good idea to start wearing a face mask whenever he goes out in public to protect himself. We are trying to be so very careful, washing our hands constantly & I now have bottles of hand sanitizer at the house, in the car, in my purse, etc. We've been told that if he begins to come down with any sickness & his fever is 100 or more, to call the doctor immediately.
So there you have it. This is where we stand right now. Feel free to bookmark this blog's website & refer back to it as I document the journey.
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