May 22 Update
Dear Fods,
This is just a quick update on the visit to HUP yesterday. Debbie will begin an outpatient clinical trial next Thursday. For those that are interested it is called a "Phase I/II Study of MGCD0103 with Azacitidine (Vidaza) in Patients with AML." While Vidaza has been around for a while the MGCD0103 is a new drug (hence no name) that has shown promise in reinvigorating cancer suppressing genes. The idea is for these reawakened genes to do their job and fight the cancer. This clinical trial is being run at HUP and a number of other cancer centers (MD Anderson, USC, etc.). There were 2 seats left in the study yesterday and we expect that Debbie will get one of them.
The regime will not be easy and we will need to go to HUP for 7 days in a row for the Vidaza shots and Penn Home Infusion will come to the house on weekends. The MGCD0103 is a pill that is taken 3 times weekly for a 28 day cycle. Then the cycle repeats. Debbie will go through 2-3 cycles and we will see what effects this regime will have on her leukemia. BTW -- Porter told us that the last BMB shows that Debbie's cells are 40% leukemic! Remarkably, her counts are normal and strong.
Because of Debbie's strong counts, Porter thought that this clinical trial gives Debbie a better option than another round of induction chemotherapy at HUP. It will certainly give her more comfort and control (being at home) over the summer months. If she does not react well to the treatment, induction chemotherapy always remains an option. Unfortunately, the procedure will require monthly BMB's (ouch!) but Porter agreed to do them for Debbie.
We will start this regime next Thursday. Days 5 and 7 are supposed to be long days because they will need to do additional tests at certain times after the drug is administered. Debbie asked them to delay starting the procedure so we could have Memorial Day at the shore.
We will keep you posted on the progress.
Debbie sends her love to all.
posted by Joe @ 5:13 AM
21 Comments:
Well, let's keep our fingers,toes and whatever else we can cross,crossed! I'm so happy to hear you still have that fighting spirit. I was looking forward to sitting on the beach with you this summer as I plan on spending the majority of my summer there this year but it sounds like you are going to be busy getting well. We'll have to do it next year. I'm looking forward to it. I sure hope this new trial gives some positive results. At least it doesn't sound painful with the exception of the BMB's. Hold that doctor to his word and make sure he does them. I remember you telling me how much better he is at it then the nurses. I look forward to hearing about the positive results that I expect you will be getting.
As for me I've been so busy with the spring sports season. I photographed a few extra leagues this year and I hope to tie up the season by next Friday. I'm thouroughly enjoying my grandson. He's the most pleasant baby. I think he must weigh around 27 lbs. now and is so tall. He goes to the doctor for his check-up next week. He's crawling now and is enjoying his new found independence. Between work,babysiting and my gardening the spring has flown by.
Take care and try to enjoy the summer.
Love,
Betty
Dear Debbie,
Well this is better news. The trial sounds promising, I will say that several studies have shown how patients with a large network of people praying for them do so much better than those who don't.... so I KNOW you will succeed in this trial. This little light of mine.... you betcha Debbie.
I'm busy getting ready for my midshipment's graduation. We sponsor a mid-kid Madeline.. she is graduating number 31 in her class of over 1,100 and is going to be a Marine Helicopter Pilot.. I'm so proud of her.. even though I had nothing to do with her success other than offering her a home away from the yard at weekends! Her mother and I have had lots of fun planning a big party by the pool. We;re looking forward to watching the Blue Angels fly over the graduation cermony...
Debbie hope many pennys from heaven are coming your way...
Enjoy Memorial Day... love Visitor Alison.
Debbie:
What are the chances that this clinical trial would come along now! We are keeping you in our prayers daily. Am sending a big hug!
Tonight Brendan graduates from 8th grade! Whoo Whoo...and so ends our grade school career. YES!
Keep that chin up Deb. You are a role model for all of us.
XXXOOO COD Eileen
Chizzie-
This sounds like a very good strategy, honey. (Except for that monthly BMB business - yikes! To paraphrase Patrick Henry, "Give me Dr. Porter, or give me drugs!)
Seriously. My prayers are all about seeing the Vidaza and MGCD0103 pumping up your genes and then seeing those reinvigorated cells cruising around your blood stream munching on the leukemia cells like Pac-Men. Hah!
I'm so glad you are going to be able to do this pretty much from home, too. Good show.
Have a great time this Memorial Day weekend and hope to see you soon.
Love to all the Teklits and FOD's!
K
I'm so sorry to hear that your leukemia has returned. Some people mentioned that you didn't look yourself in the beach pics, which I didn't notice at all. I thought you looked amazing! I couldn't believe how gorgeous and big Jessie's children are and how tan Joey was(I'm so jealous!)
I was so happy that you could all be together for a family vacation in Florida.
Dr. Porter's recommendation to try the new treatment sounds promising, and I'm keeping my fingers crossed that you get into the program. Just think...not only do you get to enjoy most of your time at home, but you get to eat good home-cookin! No more yucky HUP food.
Please know that you continue to be in my prayers. Even if I don't post, I do check daily so you are always in my thoughts. Stay strong and keep fighting!
Love,
Lisa
Hey Debbie,
So glad to read that you are home. Although MGCD0103 does not sound like a walk in the park, it certainly beats a room with no view at HUP. You go girl--still completley optimistic that we will be walking the aisles of Rices this fall and foolishly spending Joe's money! Enjoy the weekend at the shore. Love to all the FOD's--especially Mo and Bob--prayers for you all too.
<3 Eileen
Yay- the trial sounds like a great plan! =) Glad to hear you've got something good to look forward to, rather than the dreadful HUP.
Love always,
Sarah and the Booths
Dear Deb and family,
The Rumsey family have all put you in their prayers. Mom sends her love. She is up with me through the holiday. We are staying home. I am not up to the traffic for the holiday plus Mom had cataract surgery so she is fine with hanging out for the weekend also. This new trial is interesting. You getting to stay home sounds wonderful. Keep your faith. Love, hugs, and prayers, jean
Hi Debbie: Will definitely keep our fingers crossed that this trial works for you. Have a great and relaxing time at the shore - what a beautiful weekend it will be. Have one of those frozen drinks and take in all that you can. You'll beat this one too. Prayers are with you. Love Shelly
this sounds better..like the idea of you being at your own home every night..athough with this new no name drug, i feel like calling you R2D2 for some reason...
Busy here with end of the year events.. helping out with grad nite(will work it all night also.) and stuff at the school i work at..
Have a great time at the shore..you have definetely earned it.. i will be at a baseball tournament with mark, and patrick is in a "lockdown" at his school working on the s enior video.. have to get it done.so a group of them will be spending alot of time editing..
Have a great weekend.. stay strong, and relax.. we'll all continue the prayers.. love,, mdf
I think it's no mistake that they call them "trials" big hugs to you Debbie!
Jessie - your babes are BEAUTIFUL! I was looking at the pictures thinking if Emma is that big then so is Sawyer...WHERE has the time flown to? Those sweet faces are the best medicine for your mom ;-)
I'm praying!!!
Janet
Hey Deb,
It's a beautiful day here. Hope it's warmer on the beach today. But be careful in the sun please. I just spoke w/ Bob and he's still feeling good. Thank you for your concern. Have a wonderful time and give everybody hugs and kisses from us.
Love, Mo
Hi guys,
Saw your blog to Bob....so glad you're having fun. Just wanted to say hi and that we're thinking of you too. Talk to you soon.
Love, Mo
dear deb,
just wanted to say Happy Memorial Day. it sounds like your weather at the shore has been perfect. Stayed home this weekend. not into the traffic thing. keeping you in my prayers, with extra special ones this week as you start your new treatment. mom sends her hello's and prayers.
love hugs and prayers,jean
Hi Debbie,
It was so great to see you on the beach...and better than that surrounded by your wonderful family. I enjoyed talking to you!
I just wanted to let you know that you will be in our prayers as you start the new trial on Thursday.
You are always in my thoughts and
prayers as I always tell you....you are my inspiration!
You truly are a special woman!
Take care!
Love,
Donna, Chuck and Wyatt
Deb... it was great to chat with you the other day. Am thinking of you enjoying the summer sun at your favorite place.
As promised, I'll grab KM and get over to share some much-needed Cosmos with you.
THANK YOU sooo much for the gifts... I can't enter or leave the house without thinking of you. You're in my thoughts all the time.
Keep the faith...
Lk
Hey Debbie,
It was great to see you today. The beach was so nice. I did get a little burnt though. Believe it or not I did go into the water. It was pretty cold.
So, back to you. You look so good, it's hard to believe you have an illness. It's always so nice talking with you. I hope all goes well this week with the new treatment. I'll be thinking about you. Hopefully you will be able to hit the beach in two weeks as planned. I'm going back to WW tomorrow as I said today on the beach. Hopefully I'll be at least five lbs. thinner when I see you next. There, I've committed to it in writing. See you soon. Good luck this week.
Beach Betty
Dearest Debbie,
Sitting on the sidelines, reading the blogs, and cheering you on. I am still seeing "positives" ... there is a "plan A", and a "plan B", if needed. Dr. Porter is pleased with you numbers, although, I heard through the grape vine not all the labs were good, but, I also looked up some of those causes, and it could be drug induced, your recent gb disease, or, not enough cosmos in your system.:)
Another positive, is being able to do your new treatment as an outpatient, knowing Porter agreed to do the bmb, you had a great weekend at the shore, and the Phillies are close to the 500 mark.
Although I am not doing the CCD thing anymore (thank you, Jesus), I am still in the prayer lines, asking for God to bless you and get you back in remission, and to have a great outcome for Dr. Mazzola. I ask for blessings to your family and for Mo. What pillars of inspiration !!!!!
Best wishes to you and your loved ones. Please let me know if there is anything I can help with. I still have the baby ... she just scolded me, reminding me that she is not a baby, but a big girl. She turns 5 in July. ... but if I can do anything, I sure would like the chance. Especially since my blood did not drop at the blood drive.
Remember you are loved. Ruthie McGinnis
Deb,
It was great to hear your voice...you sounded strong. I'm sorry I'm going to miss you at HUP tomorrow.....I miss seeing you. Hopefully I will be able to take you down to one of your appts. Good luck tomorrow. I hope all goes smoothly w/o snafus. Bob sends his love. I'll talk to you manana. Prayers going out tonight.
Love you, Mo
PS to all the FODs who sent prayers and well-wishes to Bob, I just wanted to thank you and tell you how much we appreciate your concern. Bobs on day 5 post transplant and is doing well so far, but we've got a few weeks to go yet, so as Debbie always says....one day at a time. Thanks again. Love, Mo
Hi Deb,
Just thought we'd say hi....hoping things went well today. Hope you didn't have a problem w/ traffic....the westbound side looked crazy on my way down. Bob just finished lunch and is snoozing. He's a little tired w/ hgb 8.3 and got platelets today but otherwise still good. We're both thinking of you though and hoping you had a smoother time today. Talk to you soon.
Love, Mo and Bob
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