Flavopuridol Study Update & A QUESTION

[dannysbrother]

Continuing on FLAVO.

Hi everyone,

It's been a rocky time around here and we're trying to make sense of this, although for the time being I don't think any sense can be made of it...

Danny had a post-operative CT scan of his body. We got the results Monday. Today we met with Dr. Schwartz and discussed everything. It showed the surgery was clean and the left lung looks good. It showed stable disease in his liver and abdomen. However, to the surprise of the doctors and to my family, it also showed 2 new very small tumors that appear to be growing on the right lung. These new tumors have surfaced in the past 3 weeks, while danny has been off of chemo. Danny started his 6th round of Flavopuridol today. Schwartz hopes that starting chemo now will stop these new tumors in their tracks and kill them now, thus stabilizing his HCG number. The only explaination for the new tumors is that danny has been off of chemo for several weeks now and the disease is very aggressive.

The day of Danny's lung surgery three weeks ago, his HCG level had risen to 7000. We had figured out that if the removal of the tumors resulted in danny having no active cancer in his body, that by this time his HCG would be around 100 and continuing to divide in half every 3-4 days. His actual HCG level as of today is 1300; Much better then before, BUT still showing that there IS active cancer there and most likely it is coming from the new tumors in the right lung.

We thought we'd be going into these additional rounds of chemo with the intent of hitting what was already dead to make very sure that every bit was dead. Now it turns out we are pulling this chemo trigger on still active cancer. We know for sure now that danny WILL get another full cycle of Flavopuridol. (3 rounds after this round that was started today)

You know, we are all just worn out. We thought we'd have a little relief and be able to see surgery dates on the calendar. Now this. We have GOT to get these tumors. They are, in every ones estimation, the only thing left to cause dannys HCG elevation and the only thing left to obliterate. Son of a b!t<h.

So, Danny's home now after a long day. Has his little chemo bag on and finishes this round on Saturday afternoon. I imagine this round of chemo going DIRECTLY to his right lung and smothering these tumors to death. Were going to get them. It's go time. Again.

The plan still remains:

1. Stabilize disease (need stable CT scans and normal HCG level)

2. Lung surgery to remove all remaining tumors.

3. RPLND and Resection of Liver Tumors.

4. Get danny back to Arizona.

5. Go directly with Danny to our favorite strip club and watch our favorite dancer, 'Laquisha' do her favorite move that we like to call, 'the flying desert mountains of joy.'

Thank you everyone who has been sending thoughts and prayers our way. My whole family thanks you all from the bottom of our hearts. Now, we continue to march into the unknown and fight this knock-down drag-out battle every day.

When we know more, you can be sure I'll let you all know.

Peace,
(we could use a little in my family and around the world too)

-Michael

Just in case, for those of you who were slightly appaulled: Danny and I are NOT the type of guys to go to a strip club and do NOT know a stipper named Laquisha.

She was a prostitute, and we met her on the street.

[Margaret]

Great news Michael!

How's the patient recovering from the surgery?

You all know that we are thinkking and prying and cheering for you every day.....please let me know how I can help

Prying?? Yes I guess we are praying and prying !!!

We have to cut Boyce some slack...those blood clots make for swollen fingers and therefore bad typing

Love you guys!

[boyce]

Couldn't be any happier

Great news Michael!

How's the patient recovering from the surgery?

You all know that we are thinkking and prying and cheering for you every day.....please let me know how I can help

[dannysbrother]

hope you were somewhere fun Margaret!

Yes, RPLND is a definite necessity, along with liver surgery, additional lung surgery and an Orchiectomy. All of this needs to happen before danny can get cancer-free and my family can go home to Arizona. First though, Danny's HGC has to be brought down and normalized. We think that is happening now (post lung surgery) and will do so further given another 1-2 Flavopuridol rounds. We hope to start him on chemo again on July 19th.

Funny thing... at Sloan doctors work in 'teams' and several doctors follow the patient. I had one doc call me today (Sunday) to tell me the news I already heard from Schwartz. He said, "I've never made a call on a Sunday before but I saw these pathology results in the computer and I couldn't wait." Unfortunately, I spoiled his moment by telling him we already knew, but he was still pretty happy to relay the news anyway. ha!

gnite everyone,
Michael

[Margaret]

Michael, I have been out of town....sorry I missed your news. I think all of that sounds like great news...when do you think you will hear about the next step? I know he is healing and that will take time, although knowing Danny I bet he will be running down those hallways to get another piece of pie soon ! I just did not know if they were going to try and move forward with the RPLND. I hope you are both smiling, I know no matter what, you are together!!

Love and hugs

[dannysbrother]

Thank you all for your posts! We are certainly allowing all of this to sink in, but not getting ahead of ourselves. Still a ways to go...

Fed, thanks for the 'science talk.' I understand and I feel like it's a base that we can cover just to say we did.

Karen, you make me LAUGH!!! I think we may have found the formula! Isn't it wonderful when people of all kinds come together for a united purpose that transcends everything else??? Thank you karen.

Sharon, I know what you mean. I feel it too, oddly enough.
Thanks for the advice.

Gnite,
Michael

[sldl1106]

Michael -

I'm glad to hear Danny is getting better day by day. And what incredible words to start off the weekend!! I am estatic to hear what the doctor had to say to you.

Medicine, prayer, positive attitude and positive energy work pretty well together!

Oh yeah, I would so ask for the bone and brain scan. "Spectacular" and "so impressed" are music to your ears - "We found nothing on your scans" sounds just as good.

Enjoy your victory!

[Russell's Mom]

My mind is in an odd place right now....it is odd to be able to have elation and depression at the same time!! I have difficulty thinking about depression as it is decribed these days...sort of a demeaning label that people tack onto someone who is not going full steam ahead. I like to think about tulips that bloom and then go back into the ground for a while. It feels like my life has gone back into the bulb!! Yet......to read this this post brought the deepest smile...Danny with no cancer...! Outstanding!
I questioned about bone scans for Russell. The doctors caring for him felt it was not necessary because the cancer would follow a pattern. That they would wait for symtoms. The radiology techs that I work with said that if it was themselves or a son, they would scan everything, CT, PET, Bone Scan. An oncologist that I work with wonders why Russell was not followed with PET scans. I know $$$$ The edge that I walk on is balanced between holding confidence and the betrayal that occurred before his diagnosis. It is a constant balancing act. I found it helpful to talk with more than one person in different areas. Possibly you could talk with one of the Radiologists? (Find an energetic tech and see if he/she can give you the name of a Radiologist that might be interested in educating/having a conversation with you.) Hospitals frequently have tumor boards. People joining these usually energize conversations that have reached a barrier or lost direction. If not for anything you will have consensus. Wish that I had a magic wand!!! Take care, Russell's Mom, Sharon
PS Russell took off for the weekend, when I asked if he would stop by before he left, he strongly said no!! It wasn't a door in my face, it was an I am independent type statement. This is one crazy ride!!!!!

[Karen]

Michael,
That is such fantasic news!!!! You guys must be doing some BIG sighs! I suspect the cancer rethought the fight when it realized how many of us were trying to beat it down!

I think the formula for prayers is 10 Hail Marys and a Mi Sheberach!!!!

Fed is right about the bone scan. That was how it was found in my Dad (lung cancer mets), and there was also an increase in the serum calcium level from his blood work.

you've been through so much that I would think a bone and brain scan would put this to rest.

I am so releived I feel the tension going out of ME!!!

[Mom]

I got the goose pimples reading your post, Michael.

[Fed]

This is great news, dude. I can't begin to even tell you how awesome it was to have read that the situation is working out well. I particularly like you mentioning that you are "on the offensive." That's the right attitude, and I am glad Danny is recovering well from the surgery. Coincidence that today is 07/07/07? Also, good call on requesting the brain MRI. Gotta cover all the bases.

Now, to your question:

I do have a question for those who know the science better then me. Fed, you might weigh in. HCG levels are proteins given off by active tumor. I am quite sure this is not the case, but have to ask, if the cancer had spread to the bone would it manifest itself in the HCG level? I am not aware that a test has been done to rule out the spread of the cancer to the bone/bone marrow and I don't think the doctors had significant reason to test for it, however, we have been hit by stunning surprises in the past and I think it's important to rule out EVERYTHING as we are getting down to the wire here.

If a tumor that produced HCG in the primary (in the testis or elsewhere if it was extragonadal) has metastasized to the bone, it will most likely still produce HCG. This is usually how mets are picked out: the metastasized cells are outside of their "normal" environment. For example, a breast cancer cell that has metastasized to the brain will resemble a breast cancer cell and not look or behave anything like a neuron.
There is a way to figure out if there are mets to the bone: a bone scan. In a bone scan, one is injected with technetium-99 (99Tc), a radioactive element that accumulates in bones. About 3 hours after the injection, the patient is imaged with a "gamma camera", that detects the gamma rays emitted by the tracer. Most of the 99Tc gets absorbed by bones, and areas of high activity shine very brightly. The technique is quite similar to a PET scan, with the difference that the tracers used are not the same (a PET scan uses FDG, fluorodeoxyglucose), the actual physics of detection are different, and a PET scan looks for metabolic activity in mostly soft tissues. Hopefully this made some sense.

I am really happy for you and Danny. I'll go with my wife and kid to Zaftig's tomorrow and have a couple of latkes to your health .

[mstlyn]

My sideways sense of humor helps to keep the hurt at bay. And after all of this I'd rather deal with my own hurt than feel lost as to what to do for your child, or brother, or cherished loved one. My sideways sense of humor (shield) will tell you since most of us are uniballers it's natural for us to lean on each other since we go either this way or that. We're the Co-survivors in that we've survived and we co-exist to lean this way or that on each other. Bill, Karen, Sharon, Tammy, Margaet, Michael,......... are our Warriors. Our Protectors. Metaphorically speaking, male or female you need a real set of gouliones to carry that load. You keep us grounded. You are our rocks. We know you Lovestrong. We know you Hurtstrong too. And still there you are, and that just makes you STRONG. Thank You!!!!

Mark, That is a beautiful thing to say.

Your sense of humor, your spirit, your strength, and courage, are an inspiration to me and Anthony, and no doubt everyone else that is familiar with the long, hard, battle you have endured.

Maybe you don't know it, but many times I have taken strength from you ...

Thank you Mark

Tammy (HUGS)

[mstlyn]

What good looking young men you are.....your folks must be real proud It's great to hear that Danny is doing a lot better....

Hope you don't mind Michael, but I thought I would add a photo taken of Gerrard a couple of days ago (he went fishing in Bangkok) unfortunately he is in hospital as his pain in his lower back has become excrutiating, but hopefully they will be able to get it under control.....I just wanted you all to be able to put a face to the name and also see why I love him so much....

Hey Jenny, thats a nice pic. Thank you for sharing with everyone. I'm kind of late catching up with some of the posts .. is Gerrards pain being managed any better?

[mstlyn]

Danny's chest-tube/'pigtail' was REMOVED today! X-Rays look good.

What a relief for him. He's off the pain pump and over to oral diludid for pain.

Looks like we'll be gettin' outta here faster then Scooter Libby can say "Thanks George!" Threw Danny's spirometer at the television today. Grrrr! Don't worry, he got another one.

He's sleeping now. I think I'll try too. I don't think either of us will ever get used to being interupted a half million times every night/morning during these hospital stays. How's anybody suppose to get any sleep around this joint!

ahh well.

here are some pics i took with my macbook from today. we both look pretty zonked... but several people around here have asked "which one is the patient?" So I'm getting a little worried! The last one is of Danny pre-cancer. It's the 'real' Danny before all this.

signing off,
Michael

Sweet pics guys! Thanks for sharing those with everyone.

[mstlyn]

Sweet, sweet, music to the ears!! Watch those numbers fall!

Much love to Danny & Michael

edited because: I forgot to add a big HUG!