Flavopuridol Study Update & A QUESTION

[Scott]

He said, "I'm gonna go in there and I'm gonna get it. All of it." I do believe he will.

Beautiful. I believe it, too, and will be thinking about you all on Thursday!

[Margaret]

Michael...I am so happy to read this.

Give Danny our love....many prayers for all of you!!!

[dannysbrother]

surgery scheduled!

Met with Dr. Flores, the thoracic surgeon this morning. It's almost as if someone up in the clouds read my postings about "White Coats" and decided to give us a break this time. Dr. Flores is amazing. Gave us all hugs and got Danny in for lung surgery this Thursday. I can tell how good he is. I know that may not make sense, but I just know. He said, "I'm gonna go in there and I'm gonna get it. All of it." I do believe he will.

Danny's been going through tests all day. Lots of pre-surgery prep.
He'll be in the hospital for 4-5 days post surgery and then recover back at the apartment for a week or so before he'll be up and around. Hopefully he will start chemo again asap, most likely a few weeks later.

That's it for now. It's a big step. We're getting closer... step by step...

-Michael

[dannysbrother]

I feel like it's been a constant slug fest to get danny what he needs, when he needs it for the past 11 months. Rather then getting tired of it though, I think I get better at it. It's rare we don't get what we need after we express it... sometimes adamantly. I think some doctors are very used to patients and caregivers just 'going along' with what they say and never questioning...
it's not my style. I question. It's in my genes.

I'm going to do everything possible to get danny into surgery asap. We have come too far and overcome so much. It is just going to have to be made a priority as it should be.

I'll literally sit on the guy if need be! Just don't want to hurt him too bad, so he's well enough to operate.

-M

[Scott]

If he doesn't, sit on him until he says yes.

I hope it doesn't come to that -- but I can see Michael doing whatever it takes!

[Karen]

Michael,
I'm so glad you and Danny have encouraging news. Please let hin know were are all with him in spirit and hope. Take care!
Karen

[dannysbrother]

surgery status

well, we meet with the surgeon on Monday morning. Hopefully after seeing him, he will schedule the surgery within a few days. Technically there are no surgery times available until mid July, but Dr. Schwartz says that this needs to be done asap, so we'll have to convince the surgeon. Also, we found out that it's very possible these lung tumors will be resected rather than the ultrasonic aspiration that we were previously told about. Resection would be the most "aggressive action and would allow for better chances of a cure." When Schwartz said this it really resonated with me because for me it meant the Docs are truly treating danny with 'cure' in mind, which is very important and encouraging.

Right now, it's a dance with timing. Danny's chemo has now been delayed 1 week in order for him to be healthy enough to undergo surgery. It really needs to be done early next week, or else danny with HAVE to get another round of Flavopuridol and then wait another 2-3 weeks for surgery.

I'll keep u updated on the surgery status...

-M

[Scott]

So we will most likely wait until NEXT week for the surgery.

Michael, I was just wondering if you have a date for Danny's surgery yet or if you're still stuck waiting until the doctor is back to schedule it.

[Fed]

Michael,
I am very encouraged to hear that things are moving along with Danny. What is most impressive is that, with your help as well as the rest of your family and the treatment team at Sloan, big strides are being made, and it's all thanks the enormous task of not giving up. This is exemplary. All the best to you, Danny, and the rest of your family,

[dadmo]

Michael:
I don't know if will amount to anything but The paceline is the official Lance Armstrong Fan Club. I found some contact information and just sent them an email. My guess is they get thousands of requests but I gave it a shot.

Much peace to you and your brother

[dannysbrother]

Danny has completed 5/6 rounds of the Flavopuridol Study. The results so far are mixed but still encouraging. A recent CT scan shows that 90% of the tumors have shrunk by 2/3. There are two tumors in his lungs have grown since on the experimental regiment. This accounts for the fact that his HCG level (470,000 at the time of diagnosis) 1800 at the he started the study, made a steep drop to 450 after the first round of Flavopuridol and has been slowly rising since then. The doctors are convinced the very slowly rising HCG, now 1300, is a isolated result of the growing lung tumors. They have expressed how this is rare. In GermCell cancer, when tumors respond so well to therapy, it is unusual to have such a majority respond and a fraction remain resistant.

The Docs are now getting very creative in how they deal with this. Everything will depend on the results of a PET scan scheduled for next week. If the scan further proves the docs theory (which we are hoping and praying for) and shows cancer activity is isolated to the lung tumors they will recommend radiating the 2 tumors during a surgical procedure and 'melting' them away. After that hypothetical surgery he would need at least 4 weeks of recovery before an addition round or two of Flavopuridol. Since this is a STUDY and there is not set protocol, there is leeway in terms of how many rounds they can give him.

Last week I posted an update on Danny and we now have the results of the PET scan. VERY GOOD NEWS. Well, not "Good" but what we we're hoping for considering the circumstances.

The only present activity indicated by the PET is located at the site of the two growing lung tumors. The scan showed no other activity in the liver or abdomen. We were praying this was the case. The doctor's theory looks to be proven. While the experimental chemo has greatly shrunk and killed (we believe) 90% of the tumors, these 2 in the lung have remained resistant and grown during therapy, thus causing the elevated HCG marker. Dr. Schwartz and Dr. Bosl have recommended an unorthodox, creative approach to dealing with this which includes ultrasonic aspiration surgery of the 2 tumors. The surgery needs to take place as soon as possible. His last round of chemo was suppose to begin Monday the 18th but now been put on hold so that danny will be strong enough for the lung surgery. However, we just found out that the surgeon who does this is out of town for the week! So we will most likely wait until NEXT week for the surgery.

Then danny will need several weeks to recover and we hope and pray to see a declining HGC number. Then Docs will likely want to administer 1-3 additional rounds of Flavopuridol (the one which was delayed + 1-2 more).

The goal is to normalize the HCG and show continued progress. Then Danny*will be able to get the extensive RPLND, Liver and Lung surgery he needs. Then remission.

We have real hope.

To those of you or your loved ones out there who have failed first and second line protocol in the fight against this hideous disease and are faced with devastating news and statistics, please consider exploring all humanly possible choices for what to do next. Even though a doctor or current data may state that the disease is "incurable" at a certain point does NOT necessarily mean that it is the definite case for you. Every case is different. Every person is unique. New methods and treatments for which no data is yet available are being administered in fine cancer treatment centers around the country. You may have options and the potential for real hope.

We have a ways to go. One step at a time...

I do have a question for any of you out there who might be able to help. I guess this is the best place to ask such a thing. It might be cliche, but it is sincere and worth it I promise. Can anyone help set up a phone call with Lance Armstrong and my brother Danny? It would mean more to him then anything I could imagine. I read Danny every word of Lance's book in the hospital and it gave him strength. His spirit in these long and painful months has been tryed and damaged. This road that he walks now is so vital. He is scared and a little lost. I believe that even two minutes from Lance could be better medicine for him then anything else.

If anyone has a connection and would be willing to help, I would be forever grateful.

Thanks Everybody.

Be Well and Take Care,
Michael