Tuesday, June 16, 2009

Health Update - More Weirdness

Since I am going to be up all night anyway from my IVIg treatment with steroids yesterday, I thought I would give a health update. I thought I had mentioned that my lymph nodes have been swelling up larger and larger for the last month or so and that a new group on both sides of my face had popped up, but glancing back through the recent entries, I don’t see anything. I guess I just talked about it on cllforum and cllcfriends. Anyway, I had blood work last week and I just knew my last report of the slow down in my accelerating cancer load was going to be only temporary and I was going to see a large gain. The day or so before the blood test the nodes really felt quite large to me and one on the side of my neck was actually sore and all were uncomfortable when I lay down at night.

Imagine my shock when both the white count and the absolute lymph count actually went down! Now don’t get me wrong, that is terrific news, but I was quite shocked. Oh, the platelets did drop too, which is not the direction I want, but still just above 100, so that is still good. When Thomas, the nurse, showed me my results, I voiced my surprise. He asked why I was surprised and I told him since the nodes along side my face had popped up and the ones in my neck were quite a bit bigger in the last several weeks and one even was sore, I expected the counts to have gone up a lot. He visually looked at my neck and said he could see they were up and went to talk to the doc. He came back and said the doc wanted the PA to look at me.

This was the first time I had seen the PA. He said he was new to the office, but had been with the group for seven years. Anyway he was very, very thorough in his exam, poking and prodding everywhere, listening to my lungs, checking ears and throat, etc. He said my nodes were obviously swollen, but since he had never seen me before he didn't know what to compare them with. So, he went and got the doc.

My doc came in and said yep, they were bigger (at least I knew what I was talking about). Since I had a low grade fever (didn't know I did), he ordered a chest X-ray and put me on Levaquin for a week. He thought I had an infection somewhere. Since I had pneumonia and the E. coli lung infection last year, both without symptoms, he wanted to check out the lungs. He said if the nodes were still up when I was to see him yesterday for the scheduled appointment, he might order a CT scan to see if the other internal nodes had swollen that much.

Now, with the Levaquin, I was supposed to stay out of the sun, be careful of tendinitis and watch my blood sugar as this antibiotic can raise the blood sugar for folks with diabetes. Oh and it also can cause nightmares and it really did, some very strange, scary ones that woke me up in the middle of the night. Ah the joys of CLL/SLL. Always gives me something to think about (write about) and new experiences at unexpected times.

To tell you the truth, I thought he was wrong. I really didn’t think I had an infection; especially when I didn’t receive a call last week with any bad news about the chest X-ray. However my lymph nodes did start shrinking and by yesterday they were almost back to the way they had been – not normal but not hugely swollen either. The ones on my face are still there, but about like the rest.

I asked him why, if I had an infection, the white cell count actually went down instead of going way up. He said it doesn’t always correlate that way and that I had a history of not always reacting in the “normal” way. So, apparently I had another mystery infection of some type. Now that the Levaquin has all been taken it will be interesting to see if the nodes swell back up.

My IgG levels did plummet as expected so I got my scheduled IVIg infusion. However, even that didn’t go exactly right. A new fellow mixed the lovely potion. The last several times I have been getting stuff premixed from the supplier, but not today. It had to be mixed in the office. He somehow broke a black rubber or plastic seal inside the HUGE bottle (instead of six little bottles). There were little black pieces of the seal floating around in the solution. He couldn't throw it out as it costs many thousands of dollars, and I guess he couldn't transfer it. So the nurses who were temporarily out at my location, conferred and then put a filter midway in my infusion line. Of course the filters kept clogging and stopping the pump. They kept changing filters until they ran out about quarter to five. The nurse assigned to me couldn't see any more pieces (neither could I), so she just removed the filter from the line, turned up the speed and finished me off by office closing time. It was just a very, very long 8 hour day in the infusion chair. I hope my regular crew is back next time.

I am calling a halt to all the weirdness for at least a month. We are getting ready to go on our vacation that we have been looking forward to with great anticipation. We don’t want anything interfering with our preparations or our actual trip.

Hm, no weirdness in my life. Figure the odds!


Celeste Maia said...

Now I understand, John, why you are up all night. I know what that is like. I am happy for you with your blood test results. I will pray that things continue to improve and that you have a wonderful vacation with your family. Celeste

Anonymous said...

It is very confusing at times with CLL. Tom's IgG dropped 200 points in one month. Now at 330. His IgA and IgM are about 1/3 of the lowest. He is getting NO infections. Very curious. They are watching closely according to MDACC office notes to make sure infections do not start happening. I wonder.....could it be the Revlimid that is keeping him from getting infections?

I hope that your nodes act nicely for you. They need to behave. On the other hand, you know it is just a matter of time.......CLL....UGH

Jenny Lou

ann said...

I am glad the swelling went down! What an 'eventful' day in the chair.
Always praying for you!

David E said...

John, awesome news, enjoy the extended 'holiday' and take it easy on the ice cream, you need to save a little for the rest of us!