Update on recent roller coaster ride...

[Guest guest]

Dear Friends,

I promised that I would update as soon as some of the " clouds " cleared so

here goes:

Just a little recap for those of you who don't remember or did not read my

last post. I became very ill the last week in May with what seemed like your

regular, run of the mill, upper respiratory infection. Nothing could have been

further from the truth...As the week progressed, it became increasingly clear

that I was not getting better and, when my asthma started to kick in, I told my

husband that it was time to go to the emergency room. They immediately admitted

me as my respiratory issues were not getting better with their treatments.

Overnight, I felt a little bit better and I was discharged the next day with

promises to follow up with my regular doctor. They also advised me that my

chest x-ray had shown traces of mediastinal lymphadenopathy, or swollen lymph

nodes. Of course, I went home and googled this and realized that the lymph

nodes could be swollen by anything from an infection to lymphoma or even lung

cancer. I'm sure I don't have to tell any of you the anxiety involved in

worrying over developing some other terrible thing on top of the CML.

Anyhoo, I was put on antibiotics and steroids for a week after being

released from the hospital and I was still not getting better so my oncologist

suggested I see a pulmonary doctor. The pulmonary doctor turned out to be

awesome and he shared with me that he did not think that the swollen lymph nodes

were anything more than my body responding to fighting off an infection. His

plan of action was to give my body time to get better and to repeat the chest

x-ray to check the lymph nodes. If they came back normal, all is well. If not,

they would go ahead and order a CT scan to see what was going on.

Throughout this whole thing, I still was not getting better and actually had

to purchase a portable nebulizer to give myself asthma treatments at work. My

older son got sick with a staph infection and I became even sicker so my

oncologist gave me more antibiotics just in case I was exposed to the staph

infection and he also gave me a prescription for Tamiflu to keep in the house,

just in case, with this whole Swine Flu epidemic that is going around. That

week, my younger son also got extremely ill with asthma so we took him to the

hospital. After running some tests, they immediately usher all of us into a

room and proceed to tell me that my youngest son tested positive for influenza

type A, or the Swine Flu. The doctor told me that anyone who tests positive for

the flu this time of the year does not have the regular, garden variety flu

because that dies out with the winter months.

I immediately called my oncologist who advised me to immediately start

taking the Tamiflu that he had prescribed me. We all had to take Tamiflu and,

finally, I started to get better after a month. Also, I had that chest x-ray a

week ago and the doctor called me today to tell me it came out completely normal

and my lungs are fine.

There are a number of things that I learned throughout this month that I

think are extremely helpful information for people with CML to have and here

they are:

1. Steroids raise your White Blood Cells. While I was taking prednisone, for

my asthma, my WBCs went up to as high as 23,000.

I immediately panicked that it was the CML and it wasn't.

2. Your lymph nodes can become swollen when your body is fighting an infection

or virus so don't panic.

3. The Swine Flu is serious business. I have never been so sick in my entire

life. Although it was never proven that I had it, the Tamiflu finally made me

feel better so, you do the math. Avoid this flu through hand washing, not

touching your face when in public in case your hands touched infected surfaces,

and using hand sanitizer often.

4. Emergency Room doctors know nothing about CML and you know more about it

than they do.

5. You should be able to get in contact with your oncologist at anytime and I

am really glad that mine is so great.

6. Some people with CML do not get crashing blood counts from taking TKIs. My

normal WBC tends to hover around 10 and 14 thousand and I have been consistenly,

thank God, PCRU.

As far as the CML is concerned, my PCRs at my local doctor have been coming

back PCRU and my PCRs at Cornell-NY Presbyterian have been coming back six

decimal places to the right (0.000000etc.) because they have a more sensitive

PCR machine. This also taught me another valuable lesson, JUST BECAUSE WE ARE

REALLY SICK, DOES NOT MEAN IT IS THE CML AND THAT WE ARE LOSING OUR RESPONSE. I

was worried sick that all of this was happening because of the CML and it added

a lot of stress and anxiety to an already stressful situation. I hope my

experiences will help others and I hope you are all well.

Sincerely,

NYC