Not The Way I Wanted To Start Lymphoma Month
When I started “Paul’s Heart,” I wanted to do two things, bring awareness of the needs of long term cancer survivors who have been forgotten because they lived past the magical 5 year mark, and were no longer being followed up for their cancers, and thanks to the fast track for cures, leaving long term survivors and doctors without information about what can happen to a long term cancer survivor long after they have been cured. The second thing I wanted to do, was to bring awareness to progress, better diagnostics, newer treatments, safer treatments, more successful treatments.
Last year, I added a third goal, to bring awareness to the need for a better protocol, one that is adhered to, during treatments for cancer. After the passing of a young friend, Michael (I wrote his story on “Paul’s Heart” last year) from the same cancer that I had, it was believed that one of the same drugs that was part of my chemotherapy cocktail, and part of Michael’s, was responsible for his congestive heart failure, just a couple of months following the completion of his treatment. Cleveland Clinic is the first hospital network that I have become aware of, that is actually giving echocardiograms to patients receiving the drug that killed Michael. And they do not just do the echo once, it is through the entire treatment to follow the damage development in the small amount of patients affected before it becomes too late, as it was for Michael. He was only 24 when he died. A simple and inexpensive test done after the first, if not the second treatment most likely would have picked up the damage and other options could have been considered before the damage was too great and a young man would lose his life.
Today, on my personal Facebook feed, for Lymphoma, another post came through, just as tragic. Another young man, is now facing an end that should not have happened, and again, with another drug that I am familiar with as part of my treatment, but also part of his. Bleomyacin is known to have an impact on the lungs, scarring. The damage when it occurs is irreversible. To make matters worse, it seems to help the young man with his breathing, they gave him oxygen therapy. And as I found out once I was dealing with late effects from treatments, any patient with lung damage from radiation or Bleomyacin should not get pure oxygen. In the case of the Bleomyacin, the oxygen actually stimulates the Bleo toxicity. And this concern not only exists during the treatments, but as I am aware, even decades after treatment. Once the damage is done to our lungs it is too late to treat us conventionally.
And now, a wife is faced with a decision that I guarantee she never thought she would have ever had to face when she gave her wedding vows.
I just cannot fathom, that how a common person like me, with no medical background, other than the medical research I have done to deal with my late effect issues, can know these risks, but most of medicine still does not. What is it going to take to finally stop saying “it is not cost effective” to follow up more closely, drugs that are known to have a potential side effect on a particular body organ? Another young person is going to lose their life, because someone has decided that a protocol and follow up, is not “cost effective” yet the extraordinary measures that have gone into saving his life, a life that will be lost, is some how the better solution.
This is inexcusable and unacceptable.
Do not get me wrong, I still believe in this drug as a treatment for Hodgkin’s. I will never deny that. I am here 25 years later because that was part of my chemo cocktail. But for a percentage of patients, this drug is responsible for suffering and even death.
A closer eye needs to be kept on patients given this drug during treatment and for the rest of their lives. End of story.
This is not the way I wanted to start of Hodgkin’s Lymphoma Awareness Month. Medicine still is not aware.
Paul, I am part of the Survivors Repercussions group. I was diagnosed in 1991, 3B, spleen removal, 7 cycles MOPPABV. I moved on with not too many health repercussions from my treatment. That said, Feb 2014, my then 14 yr old son was diagnosed with HL 2B. (You have read all this on the repercussions site) As we started, OUR, 4 cycles of ABVD and 21 radiation treatments, I took not in the huge differences in the treatment of children vs adults. John’s chemo was 4 days in patient and day 8 an outpatient infusion. Two nurses check and administer each child’s infusion. John always was sick during chemo due to anxiety. Dr’s tried every combination they could think of including Marinol to stop his nausea. Unfortunately, we never found anything that worked. Children’s Hospital of Cincinnati gave us access to so many services: social worker, psychologist, school services, financial, and home health care. We used all these services and they were a God send. My treatment at 29 yrs old at the University if PA did not resemble John’s treatment although I had excellent healthcare and consider myself cured of cancer.
The reason, I’m writing this on your “Not the Way I Wanted to Start Lymphoma Month” blog is I wanted to tell how children are now safeguarded from what happened to Michael.
Before WE began treatment we spent a week inpatient getting a PIC, lymph node biopsy, and some very important tests. John was given a PFT before he started chemo to have a baseline of his lung function. Also he was given an ECHO and EKG, for a baseline of his cardiac function. After, he finished his 4 cycles, the tests were repeated. After radiation was done tease tests were repeated. John had 4 checkups during 2014-15 and these test were repeated at 2 of the 4 appointments. John just finished his 1st year cancer free. He was released from Pulmonary and Cardiac services as it was determined that he has suffered no adverse effects to his heart and lungs. John does not have return the Blood Disorders clinic for 6 months. At CCHMC, they have a Survivorship clinic and he can be a patient there for the rest of his life. I, on the other hand had to find a Medical Oncologist on my own to coordinate my medical issues in the future.
What happened to Michael is a tragedy but I wanted you to know there are healthcare institutions that are taking the precautions Michael deserved.