LIVING WITH MCL

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The results of my latest blood work on Wednesday, and subsequent exam revealed essentially no changes in my condition. Lymphocytes had actually come down slightly, hemoglobin was back above 13, and spleen and liver were unchanged. Platelets were up, but my doctor didn't seem to think that was anything unusual. I'll wait till my next CBC to see if it is a trend or not. As we usually do, we talked about possible treatments when the time comes. My doctor went through some new information he had learned, and to my surprise indicated that in indolent lymphoma's the trend was to try Rituxan alone as an initial treatment. That had been my choice of treatment for awhile now, but when we had talked about it previously, he indicated it may not be the best approach. Even two other experts, I sometimes consult with in France and the UK, indicated that while it would likely do no harm, they weren't of the opinion that it would do any good either, and recommended against it. St...

At least that's one piece of good news. It's not that something drastic has changed in my condition, but it's been awhile since I posted so I thought this might be an appropriate time to post at least one piece of good news. No offense Denver fans. Like I said, not much has really changed for me. I still feel fine, but my performance on the bike is not as good as I would hope. Maybe it has to do with the weather? It's been very cold here lately, making training more difficult due to the extra clothing I need to keep warm. The cold weather coupled with the accident that kept me off the bike for awhile, I hope is the real reason I seem to be getting into such bad shape. Plus I am getting older. Maybe just the fact that I'm 57+ is another reason I can't keep up with the 30 year olds. I 've also started running on the treadmill at home. Running is great exercise, (you can get an equal or greater aerobic work out in a shorter time), but as with everyth...

Being a slow health care newsday (referring to my other blog ), and not having posted anything to this blog lately, I started getting a little fidgety. So I went blog hopping, and came across this article by a 3rd year med student on the west coast. It may be a little late for me and some others, but his thoughts on why you don't want to be hospitalized just seemed worth sharing. Hospitals: Worse Before You're Better "Above all, do no harm," is pretty much bullshit. Let me warn you. You do not want to be a patient in a hospital. One, it means you're sick enough to need to be in a hospital, which is pretty sick. Two, we'll make you feel much worse until you feel much better. If you do get admitted, please just expect the following to happen. If you're in a teaching hospital, with attendings and residents and medical students, more of this may happen. Be prepared in advance, so that you don't get all crabby when I try to be happy-nice medical student a...

With 2005 nearly at an end, it's time to reflect on some of the more important occurrences, in my life that is, during the past year. After all, as Becky says, "it's all about me". Everything else just pales in comparison. :) Overall, it was a decent year, although the last 3 months were nothing to write home about, but I'll still try to inform you of all the major happenings. First, I am still alive and haven't needed any treatment. I'm feeling reasonably well, with no major health problems, and I am still able to ride my bike pretty competitively, although my most recent bike accident has left me in some sorry shape. The one significant thing that happened this year was bringing my 85 year old aunt from Florida, to live with Edie and myself this past April. We have room, but it is still difficult. I can tell you that it is true, the older you get, the more you revert to being a child. She is not in the best health, but is managing with lots of do...

Well, here it is Christmas day, and about a week since my last post. I've pretty much recovered from my bike accident, except for my shoulder (I'll get to that in a minute), and I'm back riding as much as before. Unfortunately, I'm not riding as well as I was before. I've learned that at my age it will take a lot longer to regain my previous fitness level. I was off for about about a month, so hopefully in 4 months I can regain most of strength and endurance. I'm still unable to golf because of my shoulder, and that is very disheartening. I was actually getting pretty good before the accident. But at least I know why the shoulder is hurting. The orthopedist PA finally called last week with the results of my MRI, and said I likely broke my shoulder. There was a lot of imflamation, and it looked like a piece of bone was floating around in the shoulder area. Great! I thought. NOT! I mention it here, because of what he said about getting it treated. I...

Well as of today, it's been 3 years since my diagnosis was confirmed and 3 years and 9 months since that fateful blood test. But so far I'm no worse for wear, that is if you don't consider the 3 bicycle (10 spd bicycle) accidents, with only the last one being serious. It's been six weeks since that accident, and I think I may be on the road to recovery. I've been back on the bike for over a week, and I think the dizziness, from the concussion, has finally ended (knock on wood). My ankle still hurts a little, due to the scab that is still in tact, where I had 7 stitches removed about a month ago. I hope it's not taking longer then normal because of my MCL. That is minor compared to the amount of work I need to get back into the shape I was in before the accident. it seems the older you get the harder it is to get back your previous conditioning. My shoulder is still a little stiff and sore also, which has really put a crimp in my golf game, but I plan...

During all this time researching, talking to doctors, to others with lymphoma or other cancers, to my friends and to anyone else I may have come in contact with, I have learned so many important things. It has really changed the way I look at life, and has most certainly rearranged my priorities in life. I still do have my ups and downs, but I try not to dwell on things as much as before. Lots of people get sick. The fact that I got sick, while it certainly wasn't something I planned for, is a fact of life. To think that I or anyone shouldn't, wouldn't or couldn't get sick is really an egotistical attitude. Now I just try to look at life as something to cherish and to enjoy. I think the tagline that I use at the end of emails says it best - "The future is just a concept we use to avoid living today". But besides dealing with life, I have learned a great many more things that are vital to anyone fighting cancer or any other disease. The first thing, and ...

Now I really had my work cut out for me. While there didn't seem to be the need to make a decision immediately, there still was concern. Is it best to treat while you're still feeling relatively healthy, and likely, better able to handle the intensive treatment, or is it better to wait until symptoms appear? What I discovered was, there is no simple answer. At least not one that everyone aggrees upon. Every doctor has his or her own idea as to what is the best course of action. Some doctors will tell you to wait and watch, others will want to try the less harmful monoclonal antibodies (sometimes combined with chemotherapy, and sometimes not), others will simply want to try high dose chemotherapy alone, and then others will want to go the transplant route. What I discovered after reading many reports and talking, via email and in person, with doctors and researchers I believed to be the most knowledgeable on the subject, I discovered one common concensus 'aggressive...

So here I was, faced with a dilemma. I was feeling fine, but diagnosed with what typically is considered a very aggressive form of lymphoma. My first reaction, was to go for the aggressive approach, i.e. chemotherapy, total body irradiation (TBI) and periferal blood stem cell transplant (PBSCT). My oncologist was equally aggreeable to this decision, and sent me off to the transplant specialists at Kaiser, who work in conjunction with doctors at City of Hope, for a consultation. While there, I was given a slew of blood tests for HLA typing. That is essentially an analysis of the blood, performed in order to find a compatible transplant donor. As it turned out that was the pleasant part of the visit. I then met with a transplant specialist who proceeded to inform me of all the potential hazards of my selected treatment plan. She went on to inform me of the known effects of chemotherapy, and the increase risks of contracting other cancers as a result of the total body irradiation. ...

Ever hear the statement "sometimes the cure can be worse then the disease"? Well in the case of cancer, a truer statement cannot be found. There have not been many advances made in the treatment of cancer in the last 20+ years. Standard treatments still consist of infusing deadly chemicals (chemotherapy) into the body, along with the use of radiation, at dosages many times greater then would be seen from normal chest x-ray, to kill the cancer. Some have likened these treatments to blood letting in the dark ages. Unfortunately, these treatments can't differentiate between cancer cells and normal cells, resulting in a plethora of egregious effects on the body. Due to the destruction of healthy cells in the body, numerous deliterious side effects can occur, i.e. drop in blood counts, nausea, fever, chills, mouth sores etc. While these can typically be treated with common medications, it is the other effects that may occur shortly after treatment or several years down the ...

From the moment my friend notified me of my high lymphocyte count, I immediately turned to the internet, and began investigating every possible reason for a high lymphocyte count. By the time I received the diagnosis of CLL, I was an old hand at navigating the vast knowledge available on the internet. I managed to find a news group with others also diagnosed with CLL, and was able to pick the brain of a CLL specialist in the UK. It was at this point that I realized that our health care system leaves something to be desired, and doctors aren't the gods some of us may believe them to be. From all the research I had done, people I had exchanged information with and a review of my immunophenotype report, I came to the conclusion that I did not have CLL. Of course that didn't necessarily indicate a good thing. There were several other possibilities, the most likely scenario being even worse. I confronted my oncologist with the discrepancies in the report, and asked for some addition...

On March 26, 2002, I went for a routine physical exam, something I did on a regular basis. At the time I was feeling fine, and thought I was in pretty good shape for a 54 year old. I may have been a little over weight, but I had been riding a bicycle 150+ miles a week for the last 20 years. If nothing else, at least I was aerobically fit. Never in my wildest dreams was I concerned about a blood or lymphatic system cancer. My biggest concern was dealing with a cholesterol level greater then what would be considered healthy. So it was with great surprise, when a friend, who works at the clinic were I went for my exam and blood test, came over to my house and asked "how are you feeling?" Of course I answered fine. She went on to confirm that, and at the same time inform me that my lymphocyte count was elevated. The obvious response to that sort of news, especially when you're feeling fine, is to chalk it up to being a lab error. So when the doctor authorized a second blood t...

My name is Marc Kashinsky. I was born in Pittsburgh, PA in 1948, but currently reside in Long Beach, California. Over 3 years ago, I was diagnosed with Mantle Cell Lymphoma (MCL), a rare and typically very aggressive form of lymphoma. From the moment I received the fateful diagnosis, I knew my life would change. I also know that society tends to look at cancer patients in a different light (good and bad), so I chose not to make this publicly known. Only my very closest friends, my boss and a few others at work know of my condition. Since moving to California, I have always been very active. Riding a bicycle competetively for a number of years, I still train for competition and ride 150+ miles per week. A recent accident, which resulted in 7 stitches in my ankle and a concussion, which is still causing some dizziness to this date, has made me realize that while this disease has changed the way I look at life, the bike accident made me realize, that things can change even more dramatical...