Wednesday, May 16, 2007

Deb’s Update: May 16, 2007 8:30 AM PST

Hi All,

Sorry for the delay in the update on how things went with the MRI, vaccine screening, etc... Here are the latest updates.

Last week I finally had the neurology appointment with my neurologist here in Thousand Oaks. He is the one that called me "normal" last time due to my neuro exam. Of course this time he didn't make me memorize anything and tell him an hour later, so I was much happier :-) He did tell me that my EEG that was done about 2 months ago was perfectly fine... no seizures were seen which is always a good thing! Basically I was in and out of there, but here is one interesting thing he asked me: "Are you having additional word finding problems?". I don't think I am and I Kim, my mom and anybody I talk to all the time doesn't think so either! Apparently it's the anti-seizure medication that I take which can cause that.... so, I have that part of my brain chopped off and now I'm on a pill that may change my word finding. I will keep you posted on that...

The MRI that I had last Friday (May 11th) was "better than the last one even" according to Dr. Yu! I am always stunned when he tells me things like that :-) He said it was just perfect and so clear that he was happy too! I do usually get stressed out during and after the MRI until I get to hear the results from Dr. Yu.... I didn't think I was stressed this time, but Kim reminded me that she can tell and that I talk too much when I'm stressed and I get irritated... so, low and behold, I was chatting up a storm and getting annoyed by several things...

I had my screening done for a newer vaccine trial which is technically a phase I trial just because they have changed what they will mix my dendritic cells with. The good news on this trial is that the 6 antibodies that they will use to mix with my cells are the 6 that I already have! Apparently the subject only needs one of the six to go onto the trial, and low and behold I HAVE THEM ALL!!! So, you can imagine that Dr. Yu is excited to use me on this study because of my antigens. Here's the catch... my ANA (antinuclear antibodies) was high so I have to go and get additional immunology type lab tests done before I can start the study. Everything else was fine, but this is the last thing they will re-check.

Of course I was bummed that I am not just eligible immediately because I really wanted the first vaccine before my trip back East... Plus, I wanted to be the first subject on this new vaccine study (more attention when you are one of the first subjects...)! Today I am off to Cedars-Sinai again to see an immunologist which will hopefully be okay. I am sure that I will have lots of additional lab tests done and of course a physical exam, family history, past medical history, etc... done as well. Fingers are crossed that I will know these results by the end of the week.

Here is the kicker... No Temodar (chemo) four weeks prior to the first vaccine through six weeks post the 3rd vaccine! So, this is technically for about 4 months May through August. Kind of scary, huh? But, Dr. Chu and Dr. Yu actually think that the vaccine will be better for me (due to my 6 antigens that they just love!) than the Temodar... of course it's a clinical trial, so it's just a guess for them. So, the worst case scenario is that I will not be doing the vaccine trial since my eligibility is not good enough (my ANA labs) but I will continue my treatment with my Temodar. Definitely stay tuned on this stuff!!!

I also have a follow-up appointment with my radiation oncologist this afternoon so today will be full of doctor's appointments for me.... one down at Cedars-Sinai (about 45 minutes away from here) and one down the street. Hopefully the LA traffic won't harass me today ;-)

On another note... Alicyn sent me the best snacks that I have had in a long time... of course since she is a health nut, these snacks are good/healthy. I'm sure the nutritionist will like them when I tell her what I'm snacking on now... I will be calling the nutritionist right before I head back East since she wants to see how that May chemo treatment went.... of course if I'm on the vaccine trial and not on the chemo in May, she'll be all over the place just wondering why I'm changing things AGAIN!

So, Radar is back to normal in terms of his weight... I took him to the vet to get weighed (they finally got a new scale...) and they think he's perfect now! There was a new vet there that hadn't seen him before and he said that all dogs should be as thin and healthy as Radar looked and felt! So, he and I are both the weight we need to be :-)

That's it for now... I have to get ready to head to Cedars-Sinai. I can't wait to see my East coast friends, family, etc... in a few weeks! Plus, I actually can't wait to get back to work again.... it's been way too long since I've been able to actually get up, go to work, and be in a routine!

Thanks for all your comments, prayers, fingers crossed, etc.... you guys really keep me going!

Love Ya,
Debbie

38 comments:

Anonymous said...

Geeez Deb, for someone who isn't working, you sure seem to be quite busy! Make time for rest when you need it, but I know you, and you like having "things" to do! Sounds like everything is going well, hope you get in on that study as one of the "firsts" maybe they'll name it after you....mollie, can we get some help here with possible names on a vaccine or something named after Deb? LOL! At least you don't live in Miami, Deb, they got voted #1 for road rage :) not sure about LA...anyway, take care, keep strong, fingers are crossed (as always!) miss ya! Love ya lots!

oh yeah, do you want to share the what the snacks where from alicyn? would love to know
Love,
Nikki

Anonymous said...

Hi,
I used to get the apple cinnamon and the smores brownies a few years ago, before I found out I had celiac and had to go gluten-free. These bars are what I miss most!
The company is : “snacks for life”
http://www.snacksforlife.com/?gclid=COOGg7azlowCFThhIgod9whF2g

I sent Debbie the cranberry oat bars and the smores. If you get them, be sure and keep them in the fridge as they don't have any preservatives and last longer that way. Cheers,

Alicyn

Anonymous said...

Hello There Everyone Are You Still Out There For Debbie?Where are all the usual comments?Debbie thinks you are all loosing interest now that she is doing better,let's prove her wrong.She needs support at least until she gets the results of the Immune studies.Come on let's get some comments going for crying out loud!I'M STILL HERE DEB!!!!!!! MOM

Anonymous said...

Hey Deb,
Hi, glad to hear your doing well.

How's the business plan to raise Alpaca's coming along, Paul wants to be investor. Do you think they have Alpaca dollies, like they have doggy dollies? Dollies spelled wrong, you know what i mean!

I can get June 5&6 switched with coworkers, if so I can have an extra long visit with you next week. Is Oscar still invited. He loves to wrestle with big dogs!
love lots
ant

Anonymous said...

It is great that the news continues to be so positive! What an incredbile journey you are on and how amazing that you take us all along by sharing so much of yourself here on the blog - this is a tremendous forum, isn't it?

I am getting ready for my usual weekend activity - GOLF - it is raining, but I am a mudder (no comments Mollie May) so that is fine by me.

Barney & Bailey got me up at the usual 4:30 (my alarm clocks weigh 50 pounds each!) so I am hangin out until it is time to leave for the course.

So looking forward to seeing you during your visit home - will update you on my Amgen RI gig and we can talk about the Otte era that is about to begin right? wow - this is one small industry.

Thinking of you lots,
Barbara

Anonymous said...

Hey Deb!
So, it sounds like you're doing fantastic with everything right now! Good for you! I hope things continue to go well as you delve into the vaccine trial. I pray for you every night and when we say Allie's prayers with her, we always add you in there.
We're headed to the NH mountains next weekend for our first family camping trip since Riley was born. We've been with Allie, but not with both girls. Hopefully, everyone will enjoy it. I'm hoping and praying that Jean will have her baby either before or after next weekend so I can be there for it. You know I love the babies!!!
I'll give you a call this week either during nap time or after everyone is in bed for the night. Talk to you soon. Take care!
Donna:)

Anonymous said...

Oooh. Naming a vaccine after Deb... Now here's a challenge. Might have to incorporate the middle name - but I don't know it. Help me out somebody?
You guys with your healthy snacks. I'm probably going to have to get into that one of these days, but beer and dark chocolate covered cashews or wasabi covered cashews are just too appealing right now. Clear MRI, No seizures on the EEG, NOW how are you going to justify those graceless trips over invisible wrinkles in the carpet, etc. I mean, I'm happy and everything, but have you thought about not telling us the truth about the whole "I'm perfect" gig? You're tossing a wonderful excuse for mustard stains on your shirt, etc right out the window. Suppose you just tell everyone, "The MD tells me the test results are fine, except I'll probably be doomed to occasionally trip for no reason, and dribble mustard on my shirt as a result of having a chunk of brain removed."

OH, and "Baris is a mudder, Baris is a mudder."

Love ya Deb!
-Mol

Anonymous said...

Hey Deb,

Awesome news about your MRI and even better news about your immunology pre-screen for the clinical study! I'd love to chat about that clinical trial when you come east in a few weeks. I wasn't able to find much background on the company and the technology looks very similar to studies being conducted by a company called Northwest Biotherapeutics who interestingly enough filed a marketing authorization in Switzerland without even completing their Phase II trial - certainly not the traditional route to market - I'll be curious to see how it works out.
On a different note - I was at the Honda dealership recently and peaked at that Element again - maybe it's an acquired taste - I'll probably just stick with my Accord!
Keep up the amazing work in beating this thing as it seems that you have been given the most impossible job of all - being an inspiration to the rest of us!
Take good care and know that you are always in my thoughts and prayers!

Love you
Christy

Anonymous said...

FANTASTIC news Deb, I know you'll have fun back East with family and friends. My prayers are alawys with you ENJOY your self and take it slow.

Laura
COH

Anonymous said...

Mollie,

I believe it's LYNN....Deborah Lynn Reardon????? I think, am I right Deb?

Keep up the good work!
Love ya,
Nikki

Anonymous said...

Nikki of course you remember what my middle name is! We've been friends for years and years ;-)

It feels a little odd to NOT be on the chemo this week, but my fingers are crossed that I will be on the vaccine trial (which I won't know until Friday)... if I am not eligible, I will probably start the chemo a week late (next Monday) and will just finish before my June 2nd party!

On Friday, I will hopefully add a quick update about my eligibility to the vaccine trial as well as the Immunology lab results.

Debbie

Anonymous said...

OK, so I've got the name Deborah Lynn Reardon and the unholy "glioblastoma multiforme" to work with in coming up with a vaccine name. Hmmm. yeah. not feeling inspired. Maybe if I incorporate Radar somehow...maybe not....
I'll get back to you on this....
Love ya Deb!
-Mol

Anonymous said...

Using the following:
Deborah Lynn Reardon
Radar
Glioblastoma Multiforme
Vaccine

I'm coming up with:
Lyndeblast
Blastardon
Gliobordar ???
Radaforvac
Melyndecine
Mulborablast

What's everybody else coming up with?

Anonymous said...

immunization situation
time's awastin', let's make hastin'
vaccination pre-vacation
Healthy in the Red Sox nation

Kicking ass of glioblast
cancer's past, will be the last
coming east to break her fast
of friends and family in CT and Mass

Pick a name and not your nose
Mollie will do one of those (yuck)
Reardon Vaccine just won't do
find a name that's right and true

I think I have it, yes I'm sure
Named the vaccine, it's the cure
And are you ready for the name?
for you will never be the same.....

I challenge you to be king or queen
of naming things we have not seen
I really think this is the one
but will defer if I'm outdone:


Reardon's Multiradarblastoccine

My work is done, I flee the scene.

Anonymous said...

BRAVO!!!! love it.......Jeanne

Anonymous said...

Ditto Jeanne!!! I love the "poet's" comments and vaccine name...

Debbie

Anonymous said...

Hi Deb,
Apologies for no posts for a few days - i was on travel since friday night, may 18. I was thinking of you the whole time (even picking up posters on Glio for free reading!)!!!! I cannot wait to see you!
xxxooo
Alicyn

Anonymous said...

kudos to whomever the fleeing poet is!!

Well, back in the day, my parents had a nick name for deb, it was Hoover (like in the vaccuum) because she could eat so much (and not gain any weight, I might add) that could inspire some name, couldn't it mollie?
Deb, are you getting excited about your trip back home? Wish I could be there to see you! Stay strong Hoover!!!! ha ha ha, my parents still call you that sometimes when they talk about you!
Love ya,
Nikki

Anonymous said...

the poet thanks you for your comments :)

Anonymous said...

hmmmmm, since we do not have handwriting to analyze, how do we know who the fleeing poet is???? I would have said Mollie, but she wouldn't say she was picking her own nose, then maybe barbara (she seems quick witted too) but the little smily face at the end screams out Donna?????????

Anonymous said...

Nikki,

the poet is definitely one of those 3

Anonymous said...

I am definelty NOT the poet. My poetic skills are limited to second grade level, and even then most of my students' poetry is better than I would be able to do. Sorry, Nik, but thanks for the vote of confidence!
Donna:)

Anonymous said...

hmmm, guess that narrows it to 2

Anonymous said...

Thank you Barbara! We all know you are talented...

:-)

Anonymous said...

No vaccine for Deb,she will update with details

Anonymous said...

hmmm, well I kinda thought that donna, but someone is setting you up I think....will we ever really know????

Anonymous said...

Mollie wasn't the poet either - she was on a 5 day hiatus slaving away doing the bidding of her partner in the yard as well as hanging drywall in the basement and had no spare time to check the blog. I'm guessing Baris or Mills. The "Healthy in the Red Sox Nation" screams Baris, but no mention was made of RI (pitiful land-locked islander), and the poem has a "rap-like" quality to it, that leans me towards Mills.
Jessica, is that you?
Love Ya Deb
-Mol

Anonymous said...

we wish Debbie a safe trip home today and look forward to seeing her next week!

Anonymous said...

Deb,

I'm looking forward to seeing you Saturday. I'm glad you have all those 6 antibodies. That's awesome. I saw the note about no vaccine that your Mom posted. Have faith.....everything happens for a reason. The news about your MRI is wonderful. I pray that every MRI going forward looks as good if not better than the one you just had. I'm keeping my fingers crossed for you. I'm still charging the crystal grid I set up for your healing. It's so good to hear about Radar's weight normalizing. This is a really good sign.

Sending healing beacons always,
Bea

Anonymous said...

OK, Debster, I can't make it to either of the bashes in New England. Darn my luck. Perhaps a whirlwind stop in Delaware?

I'm in agreement with Bea about you: your MRI's are powerfully positive, and who else has a dog that can interpret them? You aren't responding horribly to the chemo treatment, in fact - you are looking fantastic! We might have been hoping for the vaccine treatment, but I'm still betting on you rockin' the odds, baby. You are like Baris off the tee - consistent, and solid. (don't tell her I paid her compliment, I'll never live it down)
Love ya Deb!
-Mol

Anonymous said...

OK, so I know you're up in New England visiting with the entire world except for me. I'm lonely and would like some blog action. What's happening in the wonderful world of Deb? I feel like "Where's Waldo" but only with a different character.
Love Ya Deb!
-Mol

Anonymous said...

Mollie,

You're not alone, I too am lonely and would like some blog action as well!

Hope you're having the best time ever! Happy Birthday Deb!!!!

Love ya,
Nikki

Anonymous said...

I'm busy, busy these days but of course I feel like I need to write a blog update... maybe tonight or tomorrow?

I'm going to have a few new pictures to show you too, but I don't think I can download them yet.... I will have some June 7th/birthday photos to add to...

Still feeling good, have finished my fourth cycle of chemo (at the Providence airport actually!) and am now able to get taken care of t everyone's house! I'm loving that :-)

Of course I miss Joey, Nala and Radar...

I'll try to write more in the next few days.

Debbie

Anonymous said...

Hey Deb!
Happy Birthday! Hope you have a great day and celebrate the big 35 in style!!
I'm getting ready for Allie's 3rd birthday party tomorrow. It's going to be Dora all the way!
I can't wait to see some pic's of your trip so far and hear all about your adventures.
HAPPY BIRTHDAY!!!!
Donna:)

Anonymous said...

Happy Birthday Debbie
Have a great day!
Ant

Anonymous said...

Thanks for the update. I was beginning to feel like Eeyore from Pooh. Happy Birthday you big freak!!!
I'm still mad that you're in New England and I'm stuck in this mid-Atlantic hell and can't get up there to see you. Don't get all spoiled and rotten, making everyone cater to you while you're there or we'll start doing word quizzes remotely. Miss ya.
Love ya Deb!
-Mol

Anonymous said...

Hello Debbie,
Hope that birthday party was great. Looking forward to seeing the pictures.Larry and I were so happy to have dinner and a good visit on Wednesday. Duncan is doing better.All tests came back showing all is fine except for a urinary infection. I'll talk to the Vet tomorrow and get him started on his meds. I'll keep you updated. Have a great time at Jodi's. Talk to you soon.
Lots of love,
Priscilla

Anonymous said...

Just me. Lonely. Wondering how Deb Clampett Reardon's trip across the country for her birthday is going. Starving for news...Wasting away...
Love ya Deb!
-Mol