OK...so a dear friend wrote me and said, "the blog needs to be more about the person then lymphedema." LOL...so I guess that is what a blog is for ;-)
I very much want to put in an article on coping and adjusting, but first, let me share a bit about what it has been like to have the combination of hereditary lymphedema and secondary lymphoma.
In my first post, I shared some of the initial experience, so in this one, I'll just bring everything up to date. My experience to say the least has been one of total frustration. The ignorance of the medical community regarding lymphedema is bad enough...but throw in secondary lymphoma, it becomes even more complicated.
Yet, I also do have to be honest and say that along the way, I have been blest with having three doctors that have made the difference, and for whom I have a deep admiration and respect for. Not only are they brilliant in their medical skills, but
deeply care about and listen to their patients.
They are Dr. Hamilton Williams III, Radiology Oncologist, Elliott Raizes, Infections; and now Stephen Szabo, Oncologist (specializing in lymphoma). I share more about them later.
Fortunately, secondary lymphoma is rare with lymphedema. But when it does occur, it is almost always Cutaneous T Cell lymphoma. Mine however are B Cell lymphomas. The first one, diagnosed in 1995 was Mixed B Cell and the second diagnosed in 2000 was lymphoplasmacytic, another B Cell type. Dr. Peter Mortimer, a renown lymphedema doctor and researcher from the UK, told me earlier this year, I was only the second case he had heard of in his career.
So, I have been charting new territory. LOL...I love the thought of going where no one has gone before, just never thought it would be with lymphedema and lymphoma. With odds like this....how come I never win the lottery??? :-)
When I was first diagnosed, the newer monoclonal antibody drugs, like Rituxan were not yet available and standard chemo was ruled out because of my immune system and the concern over what the chemo would do to the extensively fibrotic tissue of the leg.
While it is a given, that radiation is not good for a fibrotic lymphedema limb, that was the only option we had at the time to try any type of treatment. Dr. Williams designed a treatment program where I would receive radiation at a lower then normal dose over a longer period of time. This was effective against the initial tumor, but of course was not able to treat any cancer cells elsewhere.
In the meantime, I went through several oncologists trying to find one that might want to have a clue on how to help. I was finally referred to this oncologist who was a former professor of oncology at Georgia's premier medical school. What a total and complete waste of time. His ignorance was matched only by his indifference and callous attitude. I subsequetly just walked away from any contact with cancer doctors. Also, I found out recently he had reacted the same way to other patients who had developed secondary lymphedema from their cancer.
My infections doctor, Dr. Elliott Raizes had long been after me to see this oncologist he knew. Since things became so terrible for me this year, felt like maybe I needed to give him a shot.
Well, couldn't be any more impressed or happier then I am with him. Dr. Szabo is proving to be just as much as a life saver as Dr. Raizes.
After all the tests were done, he decided on a treatment program of 4 (4) week sessions of a drug called Rituxan. This wasn't developed when I first had lymphoma...and he was very very surprised that this other oncologist had not tried it sooner, especially considering the positive biopsies and subsequent complications that I have been experiencing.
The first session went well. Only odd experience was that when the Rituxan first hit my legs. I had a horrible reaction of massive itching and the color turned a dark purple. The treatment nurse quickly followed up with more injections of benedryl which help calm things down. Fortunately, this did not occur during the next three sessions.
We saw immediate positive reaction to the Rituxan. This wonder drug is so target specific that if something reacts to it, you can be sure it was a B cell malignancy. Dr. Szabo felt that there was extensive infiltration in the skin and this made since due to the plaque and condition of the skin in the left leg.
The plaque shrunk (actually almost like withered) and a nickel size tumor on the back of the leg shrunk considerably.
So now...a month past treatment... only a couple downers.
Just going through my first post chemo infection. Hopefully, the oral Bactrim will handle it and I won't have to go back on IV. Secondly, that tumor has again started growing...seemingly faster then it had before.
I have a followup in a couple weeks and we will go from there.
But all in all, I am more optimistic now then I have been in a long time.
In part Two - I'll share some clinical considerations about B cell lymphoma and primary lymphedema. God forbid any visitor/reader should experience this, but if you do at least this information will be available to you.
Pat
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