Another Update on my brother

[Karen]

Michael,
Welcome and thanks for posting. Margaret has told us about Danny and I'm so happy he's on the trail and responding. I pray that thsi does the trick for him...what a long, hard road he's traveled already. He's in my prayers and you sound like an incredible brother for all you are doing and researching.

Jenny,
There is always hope, and Patti and Michael are proof.

[Lori]

Michael, thanks for posting your brothers story. My thoughts are with you for much success for Danny in this new study. If you find the time, please keep us posted!

[Hopeful]

You need to contact both IU and Sloan Kettering. Talk to all the doctors and the next step to take. Sloan Kettering's treatment for HDC failured is different from IU. When you have HDC failure, the next step is to usually hit the cancer with chemo it's not used to. There is another chemo called oxaliplatnin too. Talk with your oncologist, make sure they are willing to help you, even if you dont follow the 'standard' steps for testicular cancer. I guess what I"m saying is that we were told by Dr. Einhorn that there was nothing else they could do when the VP-16 stopped working. However, we found Cyberknife procedure the killed a 5 inch by 3 inch tumor in his right lung. He went to do oxaliplatnin later. No matter what don't give up, don't focus on the statistics, etc. You don't know what will personally work for you.


From my personal experience this is what you have to do, research EVERYTHING. Talk to all the doctors, get 2nd opinions and find the treatment that works for your brother's cancer.

Just because he may be termed chemo-refractory, please, please don't give up. There are options out there and you don't know what will work for your brother.

One drug you should use no matter what your next chemo treatment, is Avastin. Also, look at Gamma Knife/Cyberknife procedures.


If you have questions about anything, please let me know. I am here to help provide information because my husband and I kept going and hoping to find the treatment that would put him in remission.
Patti

[dannysbrother]

So glad the ball is rolling at Indiana. I hope Gerrards doc is able to follow through.

Good to know that you are aware Robert, of this specific study at Sloan. From my experience, it seems to have flown under the radar in terms of refractory TC patients knowing that it could be a good option for them.

For everyone who may not have been able to find it, here is the link to the basic info and eligiblity of the study.

http://www.mskcc.org/mskcc/html/2270.cfm?TAB=All&IRBNO=03-146&SelectedDisease=All

As you said Robert, one step at a time makes sense...

Thinking of you Jenny and your brother,
michael

[Scott]

Welcome, Michael, and thanks so much for offering all the details on Danny's treatment. It's really great to hear from you. All our best wishes for continuing good news for Danny and all those supporting him!

[dannysbrother]

our story and another option

Hi,

My name is Michael and I'm Danny's brother. I have been following this board daily for the past several months. Sorry for not becoming actively involved until now. I guess there are many reasons why I haven't but no particularly good one. Recently, I did a search to find that my brother's case has been a topic of discussion several times before I discovered the board. We met Margaret and Boyce while Boyce was at Sloan for his RPLND. They are truly amazing people. I feel like I know you all. Considering this circumstance with your brother jenny, I thought it was time for you to get to know me too.

My brother Danny was diagnosed with TC on July 24th 2006 in Phoenix,AZ. He was 19 the time. I live in New York City but was home on vacation at the time that we got the stunning news. His HGC was 475,000. It had metastasized to his liver, lungs and abdomen. After 4 rounds of BEP and a consistent drop of his HCG to a low of 250, we thought it danny had beaten it. Two weeks after his last BEP round, his tumor marker began rising. I had finally gone back to NY one week earlier. He immediately got on a plane to live with me in NY and be treated by Dr. Bosl at Sloan Kettering. He was to get High Dose Chemo. That was the beginning of November. After weeks of tests, new scans and attempted biopsies (since one was never retrieved in Phoenix) danny was set to start. Then just two days before beginning high dose, on thanksgiving Danny went into sudden uncontrollable seizures and in the ER at Sloan we discovered Danny had five brian tumors.

The chaos that has ensued since that night has been unrelenting. He immediately began intense radiation to the brain that lasted several weeks. High Dose Chemo was not an option any longer due the hemorrhaging in his brain. No chemo was an option until he could be stabilized. In Mid December be began TIP chemotherapy. Taxol, Ifosfimide, Platinum. Basically it is a weaker dose of the same drugs used in High Dose. His HCG was 4000 when he began. He was to get 4 rounds. At the end of the third round his HCG has dropped to 7. His scans showed improvement. We celebrated. The day he was to begin his last round, blood tests showed a sudden increase of his HCG. We waited and days later the trend continued. His last round of TIP was cancelled. We had a big problem. Danny was a part of a very small minority of TC patients who are not cured of this disease by first and second line defenses. Despite the statistics (I've seen them all) and the many studies that show projected outcomes at this point (I've read them all too) I believe there is simply not enough known to reach the conclusion that this is where it ends. I don't believe that and it's not because I'm biased. Doctors have a tendency to paint grim pictures and part of that, in my opinion is due to ignorance. Add to that, the vast world of the unknown and sprinkle in a little ego. Just because a protocol is not proven in the Harvard Medical Journal does not mean there are not protocols out there that can work for you. I have been told by doctors, some held in high regard that danny is not curable. I know very well that that is not an absolute truth. Doctors don't know everything, though some may act like it and as far as i'm concerned get as many sound opinions as you can.

After weeks of allowing Danny's white counts and platelets to recover, finally he was eligible and was enrolled in a Phase 1 study here at Sloan-Kettering that Dr. Bosl recommended. It is a novel approach to danny's case. You won't find it under TC because it is not a testicular cancer study. It is a study of all refractory solid tumors headed by Dr. Gary Schwartz. The study includes a regiment of FOLFOX which is actually a colon cancer chemotherapy. Added to this is a very new drug called Flavopuridol. It has been largely developed at Sloan and is being studied exclusively to my knowledge at the moment by Sloan and a cancer center in Canada. The unpublished/off the record results have been very promising. Danny is only the third TC patient at Sloan to receive this. The first patient failed BEP, High Dose, and two prior studies. After getting FOLFOX +Flavopuridol his HCG stabilized and he went in for surgery. The seeming impossible happened. The future looks very good for him. The second patient saw incredible improvement but not enough and he is still fighting. Danny, the third patient is now in his 5th round. We received CT Scan results two weeks ago. 90% of his tumors have shrunk to 2/3 of their size. Dr. Schwartz was incredibly impressed.

We have great hope and still much uncertainty, but we think we are on the right track and believe in his treatment. We did not feel this way when we first got the news that his chemo has failed. We thought the worst. It is important to note that this study is more aggressive then the more common third line chemo for refractory TC which includes Oxciliplatin + Gemcitibine or Taxol +Gemcitibine. Oxciliplatin is apart of the FOLFOX regiment plus other chemo-enhancing chemicals and most importantly the Flavopuridol. It is also important to note that Danny's treatment is OUTPATIENT, meaning he is not confined to the hospital during treatment. We did not believe them when the doctors told us this chemo would not be hard on him. He was totally debilitated during BEP and TIP, taking it harder then most. However, on this study he has felt great. He is actually feeling better now then he has since he was diagnosed. All we can do now is wait and hope.

Jenny, it is difficult, i know. I'm in the middle of it right now. I know what it is to feel completely helpless and told the worst. I believe there is hope. hope for danny and hope for your brother. Whether you choose the study that danny is apart of at Sloan or another someplace else, or if you chose a form of pallative care, my sincerest wishes are with you both. Please feel free to contact me if there is anything I can do. I understand time is of the essence. Robert, you too can feel free to contact me if you'd like to find out more about this study. I think that the active role you play to help people on this board is incredible and would be happy to give you more information. For that matter, anyone who feels it may be benificial to talk to me further, please feel free.


Dr. Schwartz's telephone is 212-639-8324
The research nurse who you might want to ask for is Heather.

I hope this provides another viable option for you. Let me know if I can help.

Sincerely,
Dannysbrother
(michael)

[jennys]

Hi Scott and thankyou,

Gerrards doc is sending the information that Dr Einhorn needs suppossedly tomorrow and he will cc it to Gerrard....so if Gerrard doesn't get the cc tomorrow I am sure he will get back on his docs case, I am sure that he will send it tho becuz he didn't seem to have a problem when Gerrard said he would like to get his imput....I will post soon hopefully with some good news for a change

Jenny

[Scott]

Oh, Jenny, I'm so sorry to hear that news. Has your doctor been in contact with Dr. Einhorn yet, as posted earlier in this thread?

[jennys]

Another update on my brother

Hi all,

My brother saw his haematologist today and the news was not what we were hoping for.....He said that they will not go ahead with 2nd round HDC/Stem because he believes that the physical damage that will be done by the next round to his body far outweighs the benefits he would get from doing the chemo.....he said that Gerrard was chemo resistant and was not sure if there could be much more they could do.....Gerrard will see his Onc tomorrow to find out if they will go ahead with any treatment options.....so once again I am asking you guys for help

Does anyone know of any herbal medicines or alternative medicines that might be of help.....I appreciate anything at all that you could tell me about, as I am not ready to throw the towel in; I love him; and I need him big time in my life......

Thanx again
Jenny

[jennys]

Thankyou Tammy for your prayers for my brother, we are extremely grateful....Robert is helping me get information to Dr Einhorn so I am feeling a little more optimistic keeping fingers, toes, eyes etc crossed for a great outcome....

Thankyou all once again for your wonderful support, my family and I are truly grateful

Take care
Jenny

[mstlyn]

Jenny, I have been reading through this thread and I just want to tell you I am sorry for what Gerrard, you, and your
family are going through.

I am glad to hear that Einhorn said there are still options, and

I definitely believe in the power of prayer!

I know it's so scary when it comes to your own loved ones too! I have been just terrified from the moment my son was diagnosed. What if this, what if that??!?!

I just said a prayer for Gerrard, you, and your family; and I feel your strength in your posts. Hang on to that and don't let go.

I know everyone on this forum is right there beside you both.

Hugs and Prayers,
Tammy

[jennys]

Hi and Thanx again all;

Robert, even tho this doesn't sound too promising, I am still praying for a beautiful outcome....Have you got a phone no or fax no that Gerrards onc can send the details to and if his onc sends this info will Dr Einhorn know who it is about?

Thanx again all and Margaret, for your kind words, but it is I who truly feel lucky to have Gerrard as my brother

Kisses and Hugs to you all
Jenny

You might suggest to your brother to have the Doctor write up all the information as to his pathology, chemo ( dosages, schedule etc etc) as it is difficult to get more specific in asking, or him answering questions in this fashion. Certainly more so when it is at this point , after a failed HDC/Stem .

Ideally, it would be best to have his Dr talk to Dr Einhorn directly, as it is difficult to pass him information that he needs to be specific in his answers. Information as serious as this, going from a Dr, to patient, to sister, to internet, to robert, to Dr Einhorn, and back thru the same chain can cause problems. too much can be lost, mis-translated, forgotten etc etc. If you can get me the information requested, it is good to get the ball rolling in the way that we are, but since it is, the Drs. need to talk directly. If insurance or such is an issue, I will talk to him. He will help, and offer the possibilites as far as where to go from here.

As I have always told you, I will always be upfront, so I am going to include the rest of what he said.

Dr. Einhorn tells it like it is . He did say that it "sounds like he doesnt have curable disease".. and then offered some possible treatment options. It is important to keep in mind he did say " not curable" , He didn't say" not treatable"

The options were pretty much in line with the study Karen posted a few months back, and the answers Mark gave when I asked him a couple a months ago, as he mentioned oral etoposide also. All of these could be done in Australia, by his current Dr.

One way to look at it is that even though this isn't the best news, there are possibilities to treat this. Without these options, there isn't much to go further with. This is the point that with all the wins in treating Tc, there is much work to do.


So we have possibilities. With possibilities, there is hope.


R

[Margaret]

First of the rank....Thanx Dadmo for your offer of someone to stay....that is truly genorous and I might just take you up on that offer!!

Secondly...Thankyou Margeret for your support and information....I am so glad that I ever stumbled onto this sight...it has been a godsend of information and support....Margaret, is that number for Sloan Kettering....is there anybody in particular that the onc should speak to?

Thirdly and most gratefully...Robert, Thankyou, Thankyou, Thankyou, I have sent you a pm and hopefully by Monday I will have the info you asked for.....

Thankyou all once again, I am truly grateful
Best wishes
Jenny

Robert and Dadmo are really something special. We are lucky to have this group. I was thinking the other day that there is not one single person here that would not take the shirt right off their backs for someone that needed it.

I have no name to offer just that number. (I wish I had more to offer you) That is the number that Dr. Sheinfeld's nurse gave me. I will also give you Dr. Sheinfeld's number, his assistant will answer, just ask to have one of his nurses call you. 646-422-4311. They have always been very helpful.

Best of luck and many prayers for your brother. He is one lucky guy to have you for a sister!

[dadmo]

My sons oncologist at Sloan was Robert Motzer, many others here have been seen by George Bosl. Here's a link

[dadmo]

I've been riding my bike to work so we might even have an extra vehicle.