Thursday, July 31, 2008

Itching to go on Vacation - Literally

Itching! Rash! Weirdness!...and Trouser Dermatitis
Ah, the joys of Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma. (Many would argue weirdness and I have been together long before my CLL/SLL.) I don't know for sure what causes the itching, but many, many folks with CLL complain about it. I may have discovered one cause in my most recent bout with the madness.
My first bout came a few months after I completed my last round of chemo and I wrote about in this blog in November 2006. At that time the itching was accompanied by rash that was widespread over my body. Since that time I have had a few minor periods of the itching without the rash. I have prescription cream I use if it goes beyond a few hours. I had suspected it was a delayed reaction to the Rituxan portion of my infusions as I had read somewhere that it could happen. However, now it is way too long since I have had Rituxan -- two years. But none of the itching episodes I had were nearly as severe as that first time -- until we went on vacation to upstate NY a couple of weeks ago.
The itching started on my upper legs on the Sunday before we left and continued to get worse each day. I started slathering on the prescription cream (it comes in a large tub), and wore sweat pants to bed so I wouldn't slip off the bed or get the dog stuck to my legs. Wednesday morning on the plane the itching was progressing down my legs while still driving me crazy on my inner thighs and the back of my knees. I willed myself not to scratch the itch, because once I do, it goes into overdrive. Sitting on a crowded plane scratching your legs rapidly with both hands going, "woo, woo, woo," is not cool. My shoes were feeling tight, but I didn't think much about it as that sometimes happens on a plane.

We arrived in Albany and were met by two of my wife's bothers and driven to another brother's home in Utica. (He let us use his cadillac for the week! Thanks, Bill!) I tried not to think about the itching, but it was good to get out of my dress shoes. On Thursday, we drove to Endicott to see my Mom and my older brother and his wife. We spent the night there. Throughout the day the itching got worse, my loose tennis shoes felt a little tight. Just before going to bed I looked at my feet and they were really very swollen.

Friday morning the itching was getting worse and my knees didn't want to bend. My shoes were killing me. Finally I tore off my shoes and socks and wanted to take my pants off too, but again, not cool while visiting with relatives you haven't seen in a few years. Cheryl saw my feet were hugely swollen and covered in a red rash. She went and got the ointment and made me pull up my pant legs. A slight, red rash was present, but the swelling was very pronounced. She slathered the lotion all over my legs from just above the knees, down. Normally I have "chicken legs" and little muscle tone anymore, but she said my legs were hard as a rock because they were so swollen. Fortunately my jeans were loose to begin with. My brother gave me his recliner to sit in (why didn't I think of this before?) and I put my feet up.

I knew the redness on my ankles and the tops of my feet was not really a rash as it looked different from the rash on my legs, it did not itch and this happened in November 2006. At that time the dermatologist said the redness on my feet was petechiae - bleeding under the skin due to the swelling. Those of us with leukemia often have trouble with low platelets and when they get too low, petechiae is often a result. Although my platelets are lower than they should be, they are not in the danger area at all. Of course I was beginning to wonder if perhaps they were dropping, but somehow I really did not believe that to be the case. Besides, we had too much traveling to do to take time out to see a doctor!

Petechiae - Sometimes it looks more like pinpoint red spots. If you do a Google image search you will see various examples.

That afternoon we traveled to Morrisville to visit and stay with one of Cheryl's sisters. By that evening the swelling was not quite as bad. I kept them elevated the best I could.

Saturday we traveled back to Utica to have a family reunion of sorts with Cheryl's family. Several of her brothers and sisters get together each Saturday to play cards, but since we were going to be there, all who live in the area came over. We had lots of food. There were about 20 adults and 20,000 kids. I played a few hands of cards but then moved to the recliner so I could keep my feet up. I pretty much kept in the conversation of the card players at the table closest to me, but also somehow managed to fall asleep for a little bit, even with all the confusion. Cheryl wasn't pleased but at least she wasn't real mad -- one of the times CLL diagnosis actually comes in handy.

Saturday night we drove back to Endicott and Sunday morning left with my Mom to drive down to New Jersey to Lake Kittatinny to visit my youngest brother. He lives in Manhatten, but they have a summer lake home there. We finally met little Ruthie whom they are in the process of adopting. A really beautiful little four year old girl. They have been foster parents since December. The itching and swelling was much better and the petechaie was disappearing from the top of my feet, if not from the ankle area.

Sunday afternoon we drove back to Endicott and stayed there until it was time to leave on Tuesday. By this time the swelling was gone. Tuesday we drove to Norwich to visit another of Cheryl's sisters and a friend they used to live next door to, then on to Utica and finally over to Albany to catch an early morning flight on Wednesday (had to get up at 3:15 a.m., Texas time).
My feet swelled some on the plane, but not bad. Since we have been back (a week and two days), the itching keeps trying to make a comeback and Wednesday it was driving me nuts, but is back to a minor annoyance that I can pretty much ignore.

Perhaps the answer:

So what causes the itching? I don't know for sure, but MAYBE I know the cause of MY latest episode. Cheryl had an epiphany that may have been the answer. That Friday, when it was real bad and Cheryl had me pull up my pants legs, she asked if I was wearing new jeans, I said, "yes" and she asked if I had washed them first. I said, "no." I had also worn them the day before as I brought just enough jeans to wear each pair two days on the trip. She said she bet that was it as I also had worn new dress slacks on the plane that had not been washed. But I said the itching had started last Sunday. She asked what I was wearing then. UH, another new pair of jeans I hadn't washed. She made me go change and put on an older pair and from that point on it started getting better. This past Wednesday after being back a week, it started again, and I had on the new pair of jeans I wore on the trip, but they HAD been washed, so I don't know. Maybe I have to wash them several times.

I have worn new pants before without washing and it hasn't happened, but as my immune system weakens, who knows how or why it reacts the way it does. A friend of ours who deals in fabric says you always should wash new clothes before wearing because a lot of foreign fabric is very high in formaldehyde content. I Googled it and was amazed at what I found. Here is an extract from one site:

Frequent or prolonged exposure may cause hypersensitivity, leading to the development of allergic contact dermatitis. This may occur through skin contact with formaldehyde containing products or with clothing made from fabrics containing formaldehyde. Dermatitis caused by clothing tends to affect parts of the body where there is greatest friction between the skin and fabric, for example "trouser dermatitis" is usually apparent on the inner thighs, gluteal folds and backs of the knees.

Who knew? If Adam and Eve hadn't messed up, I wouldn't have to worry about this. So, my new self-diagnosis is "trouser dermatitis." Sounds pleasant, doesn't it? I bet the next time I am on a crowded plane I could get an empty seat next to me by just scratching and constantly muttering, "darn this trouser dermatitis, it just keeps spreading." Of course I better wait until we actually take off and get away from the airport.

I know this was a lot of detail, but I did manage to sneak our itinerary into the account. But, the main reason I wrote in detail is that I get reports of key word and phrase searches that bring folks to this site. An extraordinary number of those searches are about CLL and itching and rashes. So, I hope this might help someone looking for information.

I'll post a few photos from my trip in a few days. HEY, IT'S MY BLOG AND I CAN POST WHAT I WANT.... LOL


Sunshine said...

A couple of years ago my husband got the terrible rash from thalidomide. It is truly a terrible itch.
You can read his blog at (Sorry I don't know how to make that clickable)

Marc said...

Let that be a lesson to you, never wear anything new without washing it first.

I am always sure to do that, although I will admit to wearing two new polo shirts, and two pair of shorts, I picked up on our way to Vegas this past weekend.

That won't happen again. Fortunately I didn't have any unusual itching spells.