Wednesday, June 30, 2010

smooth sailing today

Not a lot in the way of side effects today, just the usual dry mouth and dehydration.  I keep a jug of water handy when it gets out of control.

I took a bit of a walk this afternoon - hadn't walked in weeks - so I decided to go only a few blocks; but enough to get me started.

The last time I walked I was coming down with a serious rash and that must have been a month or so ago.

I have no rash now, no sensitive skin and no bloodshot eye. 

Aren't I lucky?

Monday, June 28, 2010

a day without side effects is like a day without ...

I got up early today and came downstairs to log into work and spent the day working on various projects.  No noticeable strange feelings or anything.

It's been a pretty uneventful day and it was easy to put in eight hours.

I had a brief spat of exhaustion at about 4:00 but I got up and walked around for a bit and it seemed to abate.

Fortunately I will be able to work straight through the week since I don't have any doctor appointments scheduled.

Thank goodness for that!

Sunday, June 27, 2010

bafflement of side effects

Did I just have a day of diarrhea amidst days of constipation?

Here I am taking a drug that will do funny things to my thyroid and I'm wondering did it spike my T4 level so high that I got the runs or is it just the drug?

At least it wasn't the vicious diarrhea of R-CHOP fame which tends to be fairly insistent.


It was almost as if I had taken too much magnesium but I hadn't.  

It seems that when I get enough sleep the more bizarre nervous system side effects go away.   I say this because I took Friday off and had plenty of nap time.   And I don't feel weak or have any of those funny tingly sensations.

On another note, it is Sunday and I have survived my sixty first birthday by several days.  Am I surprised!

Thursday, June 24, 2010

revlimidified

I've been a little over a week into the "take the pill" part of the second cycle of the clinical trial.  I can't wait until it's over. 

Revlimid gives me the strangest side effectual sensations: tired; strange feelings of weakness that I eventually recover from; and the odd sensation that leaves me to conclude that there could be a street value in what I take at absolutely no cost.

At the moment I'm feeling a bit like I had too much to drink last night. 

My difficulty is that I find it easy to forget what the side effects feel like and when they are made up of odd sensations, like my skin being prickly, they are hard to describe or quantify.    I enjoy them anyway, at least they provide a new surprise every few days.

Something to keep me entertained.  If a little strangely.

Saturday, June 19, 2010

treating the eyeball

As you may have noticed from my blog posts I have an infected eye.

Wonderful you say but how did I manage that? 

Well, my eye gets dry in the evening like a dehydrated alcoholic and crusts over after I go to bed.  I have difficulty pulling the lids apart in the morning.  Although Visine drops in the evening prevents the worst of the dryness, my eye is red and mean looking.   I believe it is called "pink eye".

This all started sometime in my last or second to the last R-CHOP infusion (think dehydration and punk immune system) and I thought that it  would go away.  And it did come and go and if I didn't bother to pull back the lid of my eye I wouldn't notice it so much.

But it was still there and diseased. 

My eye managed to get better while I was on Acyclovir for my other condition: a rash and painful skin irritation (not in the same spots).   But it came back.

So Friday I decided to call up for an appointment at my doctors office and saw another doctor and am now taking 5 400 mg tablets a day (I had been taking 3 on the last go round).  I also was prescribed anti-bacterial eye drops that I take every few hours.

I have an appointment with an ophthalmologist for Monday.

Wednesday, June 16, 2010

oh the immunomodulation of it all

Today I saw my oncologist and the nurse coordinator for the clinical trial that I am on.  I saw my family doctor yesterday and I have had enough of doctors.   I am thankful that I will not be seeing my oncologist (or anybody else if I can help it) for another month.

I have my new supply of revlimid which I will be taking (one 25mg pill) once a day.   It is classed as an immunomodulator which means that it either suppresses or stimulates the immune system.   Considering those funny little numbers that I asked my family doctor to explain to me yesterday I would say it is the first of those, but if it actually helps me avoid a recurrence of cancer then I suppose it could be the second.

The confusion of it all is quite stimulating.

I have had a week of no revlimid and I am so looking forward to the dry mouth, constipation and immunomodulated discomfort.

Tuesday, June 15, 2010

Contemplations of Blood Work

I saw my family doctor today and showed him my lab work to obtain an English translation of what was obviously an obscure accounting of hematological ledger domain. 

Although my white cell count was knocked down to 2.3 from 3.9 (normal is 4.5-11) it then rose to 2.7 before beginning to bounce down gently to 2.6.  The important conclusion to draw is that it didn't crash and actually went up after dipping low.

Not great, but not terrible either.

My thyroid numbers turned out to be normal; in spite of my peeling, and flaking dry skin.    My understanding of this is that my T4 was high, TSH was low meaning I had lot's of T4 which is most of what the thyroid produces.  But eventually it became normal.

And to think I was feeling just like I had a lousy thyroid. 

I was a little anemic.  Platelets were good.  Nothing to indicate I should disabuse myself of the revlimid.

Speaking of disabuse, my one red eye is really bothering me; I'm going to bed.

Saturday, June 12, 2010

a day of rest and recouperation

Each cycle of the clinical trial is a three weeks on and one week off affair starting on Wednesdays.  And I am in about the middle of the week off of cycle one.

I have perhaps only a slight rash on my arms, I wasn't able to see any on my legs and my side feels normal.   But the acyclovir runs out today so we shall see what I feel like in a few days.


I have not sent the reports from my blood work to my family doctor yet since he is on vacation this week. But since I had such low white cell (and other) counts I thought he would be interested in looking at them. 

Not to mention the funky TSH and T4 values.

I took some extra levoxyl over the last few days and my finger (and some spots on my thumb) are starting to heal.

I am off the pain med until I start to hurt from one thing or another again.  I can finally get a normal nights sleep.

Wednesday, June 9, 2010

bleeding into a tube for science

My port worked pretty well today.  Mary says it's because I've been hydrating for the last few days; and that could be true.  It's been (I believe) three weeks since that side of the port was dosed with TPA and flushed.  But it worked which made the blood draw much easier.

So I had a pleasant conversation with the nurse as she put a needle into my port through my skin.  I wonder if her being pleasant had anything to do with my not feeling quite so much pain as the needle went in.  Or maybe it was the residual pain medication in my body.


But we talked and eventually got on the subject of the clinical trial and side effects; and I looked down at my hand.  I had noticed that the top layer of skin had peeled off a fairly large part of one of my fingers showing the underside layers which look more red and raw.  

She was going to call one of the clinical trial coordinators about the blood tests and said she would mention my finger.   I said I would be waiting for the initial results such as the blood counts.

I waited around after the blood draw to meet with one of the coordinators of the clinical trial and receive copies of some of the old lab reports and a hard copy of tests that could be done promptly on today's sample.

Ray was nice enough to draw my attention to the TSH and T4 tests which indicated that the Revlimid may have been chewing on my thyroid.  My skinned finger confirmed that. 

No wonder I've been so sluggish and spacey.

The blood tests are illuminating: my white cell count was 3.9 four weeks after my last infusion and I expected it to get better, but on the revlimid it has been 2.3,2.7 and today 2.6.  Normal is 4.5 to 11.

Some of the other immune system related counts were low as well and it occurs to me that I may have to spend the next year with my immune system compromised. 

This will certainly put a crimp in the carousing I had planned on doing in the local student bars.

Tuesday, June 8, 2010

the rash seems to be going away

It looks like my rash is less than it was.  And my side doesn't hurt as much either. My eye is looking normal too.

It is always nice to feel the relief of subsiding irritation and pain. 

I put in a long day at work today - I logged in at 7:30 this morning and just logged off a few minutes ago at about 8:00.  Got done what I wanted to get done though.

When I get busy it's difficult to take my pills when I should.  I just took my acyclovir and I should have taken it 5 hours ago.   I took my revlimid two hours late.  



Tomorrow I'm scheduled for a blood draw and today is day 21 in the cycle so for the next week I don't have to take any revlimid.  Whoopee! 


I wonder if my immune system will recover during the week?

Monday, June 7, 2010

the acyclovir works on my eye...

I was somewhat relieved to find that I could see things in focus with my right eye this morning.  For the many weeks I have had a good deal of sludge in my eye but it works better now.  It has lost that bloodshot look too. 

I am pleased by this side effect of the anti-viral.

But I still have a rash and my side still hurts; it may not be as bad as before but I am a very poor judge of that kind of thing.

Sometime things feel better, then they don't.  The imponderables of being diseased.

Sunday, June 6, 2010

here a pill, there a pill, everywhere...

Once upon a time I only had to remember to take my levoxyl first thing in the morning.  Early enough so I could wait an hour before breakfast.  Levoxyl is a synthetic thyroid hormone that keeps my metabolic rate high enough so I do not simply become slug like.  If I eat breakfast too soon it can be absorbed by the food and pass through my system without doing me any good.

Occasionally I read about the relationship between such drugs and insulin resistance and after much dieting and exercise I started taking metformin with meals for my type two diabetes.   I recently added glimepiride because my blood sugars went ballistic while I was on prednisone during R-CHOP therapy for my lymphoma. 

I feel like one of those jugglers who starts tossing one thing in the air and then adds another and another and another.

Back when I was a young lad in middle age my doctor put me on an aspirin regimen.  I fell off the wagon several years later after emergency surgery when I had a conversation with the surgeon and he said that I had bled a good deal during the operation.

Well revlimid has some potentially fatal side effects related to blood clots and so I am back taking at least one aspirin a day to ward them off.

It goes without saying that to continue to participate in the clinical trial I must take the revlimid; at least in the three weeks in each cycle that I am scheduled to.

Which brings me to the last of what I think are the required drugs the Acyclovir which I take three times a day for what appears to be a viral infection which causes a rash and some pain on the surface of my skin.

To deal with my sinus problems (which are many) I have a bottle of flonase which I squirt (2 times) up my nose each evening. I also take a 24 hour antihistamine and a singulair tablet.

At my age I am naturally constipated but especially so on the revlimid so I take an "as needed" dose of magnesium and fiber capsules.  Obviously (to me) I haven't been taking enough of these because I am still constipated.

The magnesium may also help with healing a compression fracture that I have at my L-4 vertebra.

Because of the pain on or in my side (sometimes I can't tell which) that feels much like a bad sunburn,  I take a serious pain pill at night shortly before I go to bed.   Since it has such an impact on my ability to think I only take it to help me sleep (so I don't roll over on my side and suddenly wake up in pain).

If I have stomach upset from the revlimid (the heartburn from the R-CHOP is going away) I have some tums and zantac.

These are the drugs I am taking now, I have stopped taking the muscle relaxants (Skelaxin and Soma) that I had to take to stop the spasms in my neck muscles; the 4 Aleve each day for the headache caused by the tumor pushing up against my neck muscles.   And the various pain medicines I took to control the pain after surgery on my throat to biopsy my tumor.

Speaking of drugs I have not had any alcoholic beverage since two glasses of wine on Thanksgiving last year when Mary and I went out to lunch at the Irregardless Cafe in Raleigh.

Life might be difficult at times, but at least it's well medicated.

Saturday, June 5, 2010

I always wash my eye out in the morning

It would make sense if I were a former sufferer of chicken pox; then I might have shingles.  Instead I have some unnamed probably viral disease that resembles shingles.

Speaking of which the rash seems to be extending up both arms and both legs.  The swath of skin that feels sunburned is still feeling that way but it still doesn't have a rash.

Enigmatic diseases are annoying.  But I can trust my right eye to have something plain and ordinary - pink eye.  I think that's what it's called.   This is not directly from the revlimid; but was developed in my last cycle of R-CHOP chemotherapy during the deeply dehydrated days.

So this morning I washed it out with some warm water; just after I got out of bed until I could see clearly through it.  That's probably something I should do every day.

Friday, June 4, 2010

the end of the week and what's that little itch?

After experiencing the vicissitudes of R-CHOP and somehow coming out of it feeling bright, cheerful and ready for more; I am suffering the decrepitude of chemo-lite: revlimid.

My arms have started to itch; and I'm afraid that if I went for a walk my ankles would itch as well. At least I'm taking Acyclovir which should help if all this is some virus let in by my asleep-at-the-switch immune system.

My body is starting to itch - different parts itching in concert.  As though they were contesting to discomfort me.

The pain med does well against the pain, but have they got any anti-itch oral medicine?

 

Wednesday, June 2, 2010

feeling better already, but what is it?

Well, what is it?

The pain - which seems to be on my skin wraps around from the upper-left quadrant of my abdomen along the line of my diaphragm almost to my spine.   The amount of pain varies from day to day and it had been quite severe.  It isn't so bad today.

Probably because I saw my doctor.  Does the magic of the word placebo come to mind?

I do have a wee bit of something to ease the pain, but I can't use it during the day because I have to work.  But it will keep me from being in pain when I go to bed and that is a very nice thing.

And rolling over on my side has been "surprising" sometimes while I've been trying to fall asleep.  

So I have an anti-viral prescription and of course the pain reliever.  Presumably this "condition" is the result of the revlimid (my doctor said so) I would assume that it's not that the revlimid does it directly, but that a virus that my immune system would normally deal with becomes a problem (this problem) because the drug is an "immunomodulatory agent" whatever that is.

Which reminds me, it's time to take my revlimid.

Tuesday, June 1, 2010

I'll find out tomorrow?

Well, the swath of pain from my abdomen around to my back is about the same today.  I'll see my oncologist about it tomorrow.

When my side/abdomen first flared up (or at least when I noticed it) my thoughts were that it was some deep problem with my spleen or something.  Although there wasn't any noticeable pain deep in my side I might have felt something in there.

Now I'm thinking something released by the decrepitude of my immune system.  It feels like sunburn on my skin.

I don't think I'll be coming off the revlimid.