Treating lymphoma has always been about timing. I cannot talk about treating non-Hodgkin’s Lymphoma as I did not have it, nor do I know anyone who has battled it. But as far as Hodgkin’s Lymphoma is concerned. I was diagnosed six months before my first wedding (that is another post) and as I begged my oncologist (cancer doctor) that I wanted to hold off on any treatments until after my wedding, he was having no parts of it. For a male patient, there really is no excuse for delaying treatment ever. However, for a female who happens to be pregnant, this is a whole other issue. For men, yes, sterility is an issue and for women as well, but when a woman is already pregnant, a hard decision has to be made whether to allow doctors to use toxic drugs to save her life, but also might adversely affect her baby’s life. There is no guarantee. I will talk about this type of decision in another post.
It has been over twenty five years since I underwent my first biopsy to diagnose my lymphoma. And I am amazed to hear, as well as quite glad, that newer patients have not had to be subjected to the barbaric methods that I was diagnosed with. But going back even forty and fifty and sixty years, cancer diagnostics have come a long way. As for my experiences, here are three of the diagnostics that I rarely hear used today:
1) bone marrow biopsy – taken from each side of my hip (felt like my ankles were being ripped up through my legs). One side note to this, I actually had to have a third sample taken. It seems that occurred after I heard my doctor say “oops” and claimed he had “lost” it.
2) lymphangiogram – a cool sounding test, if you do not mind your legs being propped in a bent position for the entire procedure. A slice is made into each foot, to all a doctor to use microscopic lenses to see lymph vessels (like blood vessels only much smaller) to inject a radioactive dye, that when subjected to an x-ray, lit my entire lymph system like a human Christmas tree to see where other possible affected lymph nodes might be located.
3) staging laparotomy – spleen removal, node biopsies, liver biopsy. Not pleasant and quite painful. An incision from sternum to belly button is made (any woman who has undergone a C-section will know this pain).
These three things were done to determine the staging of my disease, either 1, 2, 3, or 4. By the time all was said and done, I was diagnosed 3b. But in the decades since, a new kind of scan is now used to stage almost all cancers, a PET scan. I only know enough from a few friends and my father who have undergone those scans to know they are no big deal. In any case, I am glad that this new technology exists, however, it is still far from exact. There are still uncertainties that exist during the staging process, and this can delay treatments.
So let’s talk about treatments. Ask any radiation oncologist, and most will probably say they can cure Hodgkin’s Lymphoma with just radiation. As any of us who grew up near a nuclear reactor like Three Mile Island, or know World War history, radiation in large amounts is a bad, bad, thing. Side effects are brutal. But radiation could give remission to certain cancer patients, especially Hodgkin’s patients. Again, I will go more into side effects in detail in another post, but if you want to sneak a peak, I do have a link to the side effects from radiation I personally dealt with.
In the 1940’s, medicine discovered a drug, nitrogen mustard (a derivative of mustard gas, the same type dictator Sadaam Hussein used to kill his people), which had great results in giving people remission. Just like radiation, it too had its drawbacks. Besides being a deadly poison, it was also known to cause sterility in males during treatment. Unfortunately for me, that occurred. Shortly after that, a report came out that recommended that maximum treatments to reduce the possibility of sterility. Yep, the two extra months of chemotherapy are probably what caused my sterility.
Like many people before me, I was treated with both radiation, mustargen, but also a cocktail of six other drugs, all carrying various risks. And for survivors of Hodgkin’s from as far back as sixty years ago, yes, I know someone who has survived Hodgkin’s that long ago, these risks have become reality for us, and many quite critical to our health. But again, over the decades since my treatments, the doctors found out that they could treat Hodgkin’s with less drugs, and soon, my chemo cocktail had been cut in half. The hopes were to produce a remission more safely. But it cannot be understated that the drugs are still dangerous, the damage to the human body still exists.
The last sentence for me became a reality this past year. I met a young man who had done so well with his chemo therapy regimen, with the same drugs that I had been given. Yet weeks later, he would be one of the rare patients who would develop a very bad reaction within two months of being declared in remission. I did a post on Adriamyacin a couple of months ago, so you can find out the details there, and I will do another post later on. But the long short of it, this young man, still a kid as far as I am concerned, died less than six months from the time that he was told to go ahead and enjoy his life.
Like I said, treatments today, while better than they were when I was treated, are still bad today. We need better and safer treatments. We need better and safer diagnostics. We need better and safer follow-up guidelines. I have no doubt in my mind, that had the young man who died as a result of the damage from his treatment, had he been followed up more closely being given a drug that was proven to cause potential damage to the heart, he would still be alive today. A simple echocardiogram during the middle of the treatment, an inexpensive test when you put it in perspective that the lack of this test cost the man his life, could have given the doctors an opportunity to alter the treatment, or completely change the therapy regimen all together.
And so, during this month of September, National Lymphoma Month, I am going to inform you and educate why it is important to become aware of this rare disease that still needs a cure. I am not asking you to make a donation, though I know I would personally appreciate it if you would. But rather, I am about awareness. Please, share this article, and the many that follow. Share “Paul’s Heart.” Together we can make a difference.