Tuesday, October 07, 2008

New Treatment -- Mylotarg

Dear Fods,

Hi everybody! I am sorry to be late getting back to all of you. We saw Dr. Porter last Monday and he was concerned with my counts and he looked at my blood under the microscope. Unfortunately, he saw leukemia in my blood. He did the dreaded BMB and said that we needed to change the course of treatment from dacogen to a new drug. The dacogen may have stopped working. He is also concerned that the dacogen may have caused my hearing loss.

I was scheduled to be admitted on Monday morning to receive mylotarg which is called a monoclonal antibody. This is a targeted chemotherapy drug which goes directly into the leukemia cells. Somehow the BB 33 antibody from the mylotarg attaches to the BB 33 antigen that is only found on the surface of the leukemia cell. The drug then enters the leukemia cell and destroys it. This drug is intended for older patients who cannot tolerate the "big gun" chemotherapy anymore.

Before we found out about this new leukemia regime, we had long planned a Pocono weekend with my girlfriends from ICU. Mentally, I needed this break and I knew that I will be out of circulation for a while after this new treatment. Jessie and Allison were bringing the kids down for a visit because I will have lousy counts for the next month or so as I recover from the mylotarg. Mo, Bev, Lee and I went up on Friday afternoon. It was glorious, the leaves were in full color and it was cold. Some of the other nurses came on Friday night and we had a "whooping" time. Picture 18 nurses in their 40's, 50's and 60's. On Saturday morning, the surgery nurses came with Jilly, Bonnie and Kathy Moore. We had a hearty breakfast and more laughs and then I headed home to see the grandbabies.

We had so much fun with the kids. We went to our local farm and did hay rides, haystack mazes, sliding boards, and we picked up some pumpkins. It was a blast. Pop Pop carved 3 pumpkins for the kids and they enjoyed them a lot. They took them home with them on Monday. We came home and did more crafts, painted by numbers, made cupcakes and told stories. Izzie is almost walking. She takes about 5 steps and then sits down. Any moment now she will be gone. She still never cries and sleeps like a champ. Christian and Emma are getting cuter every time I see them and it is fun to read them stories to get them to sleep at night. Allie left Monday morning and Jessie stayed to see what was going on with Penn. But as of noon time, HUP did not have the BMB results so we had to sit and wait at home.

It took until 3:00 PM to get the BMB results and they were not too good. There was 35% blasts in my blood which is not good. We came in an were admitted by 5:00 and then waited until 11:00 for the chemo to arrive in the room. You have to be an inpatient for this chemo because the infusion can cause an allergic reaction causing high fevers, rigors and nauseau. Despite being pre-medicated with tylenol, benadryl, zofran and steroids, I had all of the reactions. They started the infusion at 11:30 and I did fine until 3:00 AM when all hell broke loose. I had terrible rigors, vomiting and my fever went to 104. My nurse Kelly was right here but it took a while to get things under control. Of course, then I needed blood cultures, urine cultures and a chest X-ray to make sure there was no infection -- and there was none.

I was hoping to go home today, but just now got my temp down to 100. I am hoping to go home tomorrow, however, my liver functions and uric acid levels have bumped a little -- but this is expected with this drug. Dr. Porter is being his old cautious self but is taking good care from me. The drug comes with very strong warnings from him not to fool around with the fevers once I get home because this drug can cause large drops in your WBC.

Please say a prayer that I can stay out of here. Your prayers have kept me going for the past three years and I am convinced of that. I am supposed to have another BMB next week to see what the mylotarg accomplished and then they will decide if we get another round of the drug.

Of course, the house is torn apart now with the painter in the living room, foyer, etc. I did not want to cancel him -- but Joe is none too pleased about HUP and construction at the same time.

Congratulations to Colin to be on the homecoming court and Brendan -- yes the pressure is on! Mer -- congratulations on Madrid. Spain is beautiful and what a wonderful experience. I wish that I could come along. Visitor Allison have a great time in Vegas and we hope you hit the big jack pot. It seems that you had a good time this summer with relatives from Ireland visiting. Kris -- enjoy the Colorado weather before the snows come. I hope you had a good time in Hawaii at your nephew's wedding. Cheryl -- your girls sound wonnderful, you must be so proud. Not to worry, I think that you will have grandbabies before you are 60. Glad you like you job.

To everyone else, thank you so much for your beautiful cards and calls. Enjoy this great weather and I (Joe) will write again soon.

Love to All,

Debbie

7 Comments:

Anonymous Anonymous said...

Hi Debbie,
I am so sorry to hear that the leukemia has again reared it's ugly head. I will pray for you that the Myelotarg works! Of COURSE you had a reaction, right? You wouldn't be Debbie without it:)
I hope that you are starting to feel better & will be getting sprung free from the HUP jail soon. I know how much you don't like being there. I hope you are seeing some friendly familiar faces with the nurses & that they are taking good care of you! Thanks for keeping us all up to date on the blog. I still think of you often & you will remain in my thoughts & prayers at this time. As always, please let me know if I can do ANYTHING to help! Take care & feel better soon!
Love,
Bridget Fonash

10/07/2008 6:38 PM  
Anonymous Anonymous said...

Damn, damn, damn...sorry to hear about the last few days for you!! while reading, and re reading the blog about the 33 antigens and all, all i could picture was your body behaving like some asteroid video game.. and i sure hope and pray the good guys win this round!!
I , of course, looked up mylotarg on the internet.. and i think you did manage to get just about all the side effects.. so sorry about that also. .
glad , though, that you had such a fun time in the poconos, and with the grandkids! I can't just imagine the weekend with all those nurses!
deb.. i will up the notch on the prayers so you will be out and enjoying youf freshly painted house soon..love to all of you..mdf

10/07/2008 7:24 PM  
Anonymous Anonymous said...

Hi Deb! I thought I just posted but it is looking like it was lost in cyberspace.

It makes me sad to think of you in the hospital. I am just glad that you have the nurshing staff wrapped around your finger.

The BMB had to be a little surprising as when were together you were feeling that you were in remission.

No crown for Colin. His best friend Anthony won! With this year's court you couldn't go wrong. A really nice group of kids.

Football record to date is 4-2. They seem to improve each week. If they minimize their penalities they will continue to win. We are hoping for post season play. I will keep you posted.

Mere is busy at school. She was home over the weekend for the Homecoming festivities. She was our photographer.

Both boys had dates and seemed to have fun. I will send you some to look at.

You left Joe with painters...oh my!

All else is well here. Miss you a bunch and wish there was some way to give you a hand. :)

Keep the faith! All our prayers. COD Eileen

10/07/2008 10:48 PM  
Anonymous Anonymous said...

Hi Debbie,
So sorry you have to go through this again. As always I will continue to pray. You are so blessed to have have so many good friends, I know God will continue to take care of you. Glad you had a great time with friends and family, I'm sure that helps you to endure this new set back. God Bless.
Love,
Pam K

10/08/2008 8:54 AM  
Anonymous Anonymous said...

Deb - What a wonderful weekend! And what a horrible week! Ramping up the prayers again. Love, Mussie

10/08/2008 9:40 AM  
Blogger Bosszilla said...

Hi Debbie,
So glad to see the post is up (thanks Joe). I was buggin' poor Lorraine to ask Joe for a status, but being the little worker-bee that she is, she didn't want to disturb him.
So sorry to hear you had all the side effects, but glad it's all behind you now. We'll be keeping you in our prayers and the prayers of everyone we know.
I was happy to hear that you made it to the Poconos - and it sounded like big fun! Looking forward to you getting better so we can take another shore trip - it's nice down there in the snow.
Take care and feel better soon - I'll give you a buzz in a few days.
Boni

10/08/2008 11:10 AM  
Anonymous Anonymous said...

Oh Debbie: I was hoping not to hear that the leukemia has again come back. You were doing so well and I thought you were all over it - but I know you will get through this one too. You are probably the strongest person I know. Keep up the faith - Prayers will keep on coming. Love to all Shelly

10/08/2008 8:30 PM  

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