Paul's Heart

Life As A Dad, And A Survivor

My Hodgkin’s Disease – My Side Effects

 

The following are the side effects that I personally experienced during and after my battle with Hodgkin’s Disease.  The categories are summaries as details would make each issue their own post.  Please keep in mind, these are from treatments done long ago, and are rarely used today.

Hair Loss (radiation and chemotherapy) = The hair loss from the radiation therapy is permanent.  Annoying that I lost arm pit hair, and hair along my jaw line, but nose hair grew back!  The hair loss from chemo came around 4 weeks into it.  It was very quick and a lot at a time.  I wish I had gotten my head at least buzzed because it was really kind of nasty to have clumps of hair in the shower, on my pillow, or in my comb.  Though the follically challenged may be used to precipitation hitting their bald scalps, I was not crazy about it one bit.  So, I stuck to hats.

Hypothyroidism(radiation therapy) = My thyroid is almost competely useless.  I take levothyroxine to help out.  According to medical reports, I now possess a small thyroid.  My guess it is compared to a “Shrinky Dink” (do you remember those?).  I gained quite a bit of weight by the meds have not helped losing it.  My thyroid at this point only serves to freak me out when I have scans leading to other scans or biopsies (just to rule out).

Immuno-compromised (surgical and chemo) = The main cause of this condition was the removal of my spleen.  Some decades ago, splenectomies were done routinely, especially during any particular trauma.  The good Lord created us with all of our parts for a reason right?  But supposedly we could live without the spleen.  Today, the medical society knows this was not a wise concept.  While removing the spleen was critical in the staging process of my diagnosis, it has been determined how important a role that the spleen plays in fighting infections, diseases, and even heart attacks.  Each time I am taking to the ER or undergo a procedure, it may seem as if I am being paranoid or afraid to the level of Chicken Little.  This behavior has a tendency to cause medical personnel to drown me out.  All I have to do is say “I’m asplenic” and all kinds of precautions are taken.  Annual flu shots, multiple annual pneumococcal and meningicoccal vaccines, avoidance of severely ill friends and co-workers, and definitely use asceptic procedures to clean up wounds.  Any fever over 100 degrees and all kinds of bells and whistles go off as I must be treated with multiple antibiotics while blood cultures must be done to determine what is causing the fever.  The possibility of developing sepsis is multiplied and the mortality rate if untreated within 24 hours is well over 80%.

Infertility (chemotherapy) = Just one of the side effects of the drug Mustargen.  There were concerns that infertility could be determined by the number of treatments of Mustargen.  But the protocol back then was definite.  I received 8 cycles.  Just years later, it was figured that less than six treatments would leave a male the possibility of recovery.

Radiation Fibrosis Syndrome (radiation) = You get radiation exposure from the sun, a microwave, dental x-rays and more.  At no point is someone really at any opportunity to reach their maximum lifetime exposure.  Even those living near nuclear power plants.  But until recent years, radiation therapy was the sure thing to throw Hodgkin’s Lymphoma into remission, lots of radiation.  And so, in just 30 treatments equaling 30 minutes over 6 weeks, I received four times the lifetime exposure to radiation.  Obviously I survived that treatment, but they call raditation therapy “the gift that keeps on giving” for a reason.  The “half life” of radiation is the amount of time it takes for the radiation to dissipate from your body.  When you go for a scan, you may be given an isotope that may last for hours or maybe a day or two.  I will never see the day that they radiation will be gone.

The damage created from my radiation therapy has only recently been discovered in the last few years, and several things are definitely impacted.  I have lost muscle mass in my neck and shoulders, pretty much in fact.  I am in the beginning stage of “drooping head syndrome” because the muscles in the back of the neck have been destroyed leaving the muscles in the front left with no resistance pulling my head forward.  It gives the appearance that I am often sulking and mostly I am not.  I have an increased risk of tearing my rotator cuffs or any other damage to my shoulders.

Restrictive Lung Disease (radiation and chemo) = I am pretty sure that the crux of damage was done by the radiation more than the bleo of chemo.  Defined by a number, my lung capacity has been reduced to 76%.  It was also confirmed that the lower left lobe is pretty much useless.  There is a spot on the left lung which is being scanned annually (no clue what it is).

Cardiac Issues (radiation and chemo) = It is an even draw what has caused various cardiac issues.  Most notably, the LAD (main artery going to the heart) had been destroyed to a 90% blockage requiring emergency life saving bypass surgery.  There are also valve issues which will some day have to be dealt with, along with the fact that the walls of my heart move in the opposite direction than they are supposed to.  Both carotids are not in good shape with the left side more than 50% narrowed.  Again, due to high risks, this is something that they will watch and do something when something HAS to be done.

Gastrointestinal (radiation) = Around five years ago, I developed issues with swallowing.  Last year, it finally developed to where I was not able to even swallow water.  Mulitple testing would reveal Esophagitis and severe reflux.  High acid content was noted in my stomach.

Spinal/Skeletal (chemo) = Prednisone is a great drug and it is a bad drug.  When in doubt, knock it out with this super steroid.  Unfortunately, high doses for long periods of time have consequences.  Besides messing with the immune system, it can cause osteo related concerns.  I have been diagnosed with osteopenia in L1-L4 and recently arthritis has been noted through the next vertebrae as well.  Result, pain in my back which can extend into my legs.

Urinary (radiation and chemo) = This kind of gets an asterisk because my issues did not develop as a direct result of the treatment, but because of the treatments for the other effects.  Two years ago I got hit with my first kidney stone, and it was huge.  It was believed to be calcium based, and several of the prescriptions I was taking increased risks of kidney issues.  A complication of this was hematospermia (hema means blood and guess what the “spermia” refers to?)  That will be another blog story.

Emotional(everything) = Eight of the ten issues have been discovered over the last four years.  Have I earned the right to be moody, sometimes down, scared, stressed, misunderstood?  Was the battle with cancer not enough?  If you personally know me, you may have heard of these things, but I have done more than I am able not to expose you to them because I know how scare people can get when they hear bad things.  Right now, I need everyone in my life, not running from it.

7 thoughts on “My Hodgkin’s Disease – My Side Effects

  1. I had Hodgkin’s Lymphoma and radiation treatment in 1974. Radiation is truly the gift that keeps on giving 😛 and I also gave up the spleen. Thanks for your sharing, it gives me specifics to carry with me – particularly the Radiation Fibrosis Syndrome. Of the medical professionals who have noticed anything, they pass it off on my scoliosis and kyphosis.

    • Diane, this is so wrong. And depending where you are located, there might be help and understanding for you. If you Google Dr. Michael Stubblefield, physiatrist from Memorial Sloan Kettering Cancer Center, he has published several articles on RFS.

      Paul

  2. great job Paul. I share 9 out of 10 of these late term effects with you. maybe 8 out of 10. It’s wonderful and immense to see them all laid out and elucidated. I feel like handing this out to my family and to co-workers and friends and people who say to me “I don’t have a cold… just allergies” when I ask them to stand back…

    on and on

    forever
    Annie

  3. great job Paul. I share 3/4 of these LTE with you. I’d like to hand this out to co-workers, friends, family, and everybody with a cough near me — who says it’s just allergies and I don’t need to stand back….

    wonderful elucidation…

    mille grazie

    forever
    Annie

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