I’m Sufficiently Appeased…For Now.

I have been putting off writing this post since Friday night.  I promised a post outlining my doctor’s appointment, and I have failed many of you.  I’m sure, though, it’s not the first or last time that will happen.  You would think, especially with the “great” outcome of the appointment I would have been a little more eager to share, but somehow the excitement escaped me.

I hate to keep hounding on the fact, but this prednisone is really messing me up.  I took my last dose, for two weeks, of it on Friday night, but I am finding the “coming down” from it is possibly somewhat worse than actually being on it.  So, for the flat affect, I apologize.

To get some of you up to speed as to what was going on, and why my appointment went so well, I will give a little history, if you will.  I had been worried because I am on what is considered to be a substandard treatment for Hodgkin’s.  The prime chemotherapy treatment is ABVD, a combination of 4 drugs, that is awesome in wiping out the disease.  The only problem in me receiving ABVD is that I cannot receive the B-portion of the medication, Bleomycin, because it is toxic to the lungs, and can cause short and long-term side effects and fibrosis in the lungs.  Near the beginning of my treatments, I received 2 PFTs (pulmonary function tests), that showed my lungs were not strong enough for the Bleo.  Due to this I am not now on MOPP, which USED to be the prime treatment for Hodgkin’s.

Before I received MOPP, I was on a modified version of ABVD, which I commonly refer to as A_VD.  The night after my very first treatment, my oncologist called and asked how I was handling the treatment.  I told him I was doing great and had had no ill side effects.  He also asked if I had had any night sweats since I had started treatment.  If fact, I had.  I told him that I had had one the night of my first treatment.  He told me that it should go away, and to keep an eye on it.

Well, keep an eye on it, I’ve done, because now I am having them almost nightly.  That night he asked me was my first night without night sweats that continued for nearly a month and a half.  Until I switched to this new chemo regimen.  Around the middle of June, I started having them again and, of course, have become greatly concerned.  Night sweats being a HUGE symptom of Hodgkin’s, I am forced to wonder how well MOPP is working for me, if working at all.

I ran the worries around in my head for a few weeks.  I did tell the office about the night sweats, but I have been worn out wondering and worrying whether or not I am getting better, or if I am just poisoning myself with these chemo chemicals, that aren’t even working at all.  I was afraid to ask about it because I didn’t want my oncologist to think I was 2nd guessing his medical ability and knowledge, and didn’t know how to go about asking nicely.

I figured the best thing would to be request a PET scan.  I hadn’t had a PET since May 12th, so I thought it might be good to request one.  It would bring up the topic in the first place, where I could express my worries and concerns, and would produce evident proof that I’m getting better.  I called the cancer center, last Monday, I believe and requested just that.  A PET scan.  The nurse talked to the doctor, and she arranged to have me talk to my oncologist’s physician assistant when I came in for labs last Friday.

It actually went pretty well if I may say so myself.  I told her of my concerns, asked if I could be getting worse, or maybe the chemo wasn’t working.  I also showed her some articles that I had found, showing that Bleo was the least important of the chemo drugs in ABVD, and that it is sometimes held.  I asked her about the night sweats and asked what was going on.  I told her I wanted a PET scan, and that I can’t hold off not knowing if I have gone the past 3 months almost, not knowing exactly what is going on with the outcome.

She talked to my oncologist, who wasn’t quite so hip on the idea of a PET scan yet.  For some reason or other.  But he did have a grand idea.  On June 19th I had a chest xray because he wanted to make sure I didn’t have TB or pneumonia (don’t ask, I don’t remember the circumstances).  Well Friday was the 18th, so we had a day less than a month - he ordered another chest xray.  Hmmm…  ok.  I can see where this is going.  I can agree to this.

This is the first time that I have ever seen my disease.  She brought me the two chest xrays to view in the room.  Before I always refused to look at any xrays or scans, because I didn’t want to interalize the images.  I didn’t want to be able to see what it looked like so that my mind would better off fight it.  A mind over matter type of thing to me, I guess.  But Friday, I saw it.  Even though I had refused in the past, I think I was at the point where I needed to see, just for the validation of knowing that I am, in fact, getting better.

It was beautiful.  Not normally would I say that a chest xray filled with swollen, infected, Hodgkin’s lymph nodes was beautiful, but this truly was.  I will request copies to show on here some day, but wow.  It was an amazing sight.  In comparing the two films, you could see at least a 25% (my guess) shrinkage.  And this is just after ONE 14-day cycle of chemo.  The films were blurry and of bad quality, they are just xrays, but you could see an awesome difference from a month ago.  There were areas that were less dense and some that had just simply gone away.

This was enough for me to allow my oncologist to wait one more month for a PET scan.  Just imagine how much better it will be then, and to calm my fears a little.  I asked about the night sweats, she said sometimes, according to Dr. Clark, that just happens.  Still, keep an eye on it.  It could be from the chemo itself, or I could be going into a premenopausal state due to whacked hormone levels, or it could just be.  But right now we have evidence that it’s working.  I also asked if she talked to Dr. Clark about me receiving MOPP instead of A_VD, and he simply stated, “She cannot have ABVD, she needs MOPP.”

Ok.  For now I will accept that.  Things might be different a month from now when I see the PET scan results, but for now I will accept it.  Friday truly was a great day in the way of Hodge issues, coupled with the fact that Friday was my last night of chemo for two weeks.  It really was a good day.

Now, if I can just find a way to escape the neuroticism and psychosis from stopping the Prednisone, I think I will be ok all around.  We still need to work on that part.