Mick from Australia - Dx 2005 - RIP 06/05/2012

[Bonni Hess]

Dear Sheree,
I am so very sorry that Mick's Methotrexate treatment was unsuccessful in stabilizing the progression of his disease, and that his doctors are now discouragingly not offering any further systemic treatment for him. However, I Hope that you will not give up, and that you will try to pursue some other systemic treatment options through some other doctors or medical facilities such as Cediranib at the NIH in Bethesda, Maryland, or possibly Dasatanib or Pazaponib if you can locate somewhere closer to Australia that they are being offered for ASPS patients. Did Mick ever receive any kind of treatment for his brain mets? If not, I think that it is critically important that you immediately pursue surgical removal of the brain mets if possible or radiosurgery such as Gamma Knife if surgery isn't possible, in order to prevent the brain mets from growing too large to successfully surgically remove or treat/destroy with radiosurgery. Because Mick has been diagnosed with brain mets, it is essential that any new systemic treatment be able to cross the blood brain barriar to prevent the growth of new brain mets. Most chemos are unfortunately unable to cross the blood brain barriar, but thankfully, tyrosine kinase inhibitors (TKI's) such as Cediranib, and probably Dasatanib and Pazaponib are able to cross it to help prevent new brain mets.
Please keep the Board updated on everything as you are able, and know that we are all here to try to help in any way that we can with shared information, ideas, and support. Take care dear Sheree, give yourself and Mick special hugs from me, and know that I am holding you both very close in my heart.
With special caring thoughts, healing wishes for Mick, and continued Hope,
Bonni

[Sheree]

Hi everyone how are you all doing? I hope you all are well. I thought i would finally check in while i have 5mins and give you an update on Mick. Well i wish i could give you good news but i cant. We went and seen another dr, Dr Paul Stalley in Sydney but have just recived a letter saying that he wouldnt beable to help Mick with any tyoe of surgery when we seen him he did talk of a 'new' trial drug and well that is as far as it has got i didnt even know the name of it or anything fingers cross he may ring us up but i doubt it very much.
Well we have moved nearly 2 months ago into our own house its what Mick wanted to do. It has been awesome except that i have notice Mick seems to be getting worse he is always tired is getting less and less active due to the tumour in his knee i think. All tumours have grown and new ones have come. One of the new ones is startin to grow on his head. He thought it was a start of apimple but nope doctor said it looks like a tumour
We know have pallative care coming round and seeing him so i dont know what that really means seem both our gp and his specialist dr bonaventura referred him to them. But hopefully things might change with xmas round the coner but i will let you all know.

I WISH you all a very wonderful xmas and all the best in the new year 2012 xxxxxxx

[Bonni Hess]

Dear Sheree,
Thank you for the thoughtful update. I have missed you on the Board since your last update in July, and was SO hoping that no news was good news. I am so very sorry and concerned about Mick's extensive disease progression, and I am very upset that his current doctors seem to be giving up on offering him any other type of active treatment. I strongly recommend that you not wait for Dr. Stalley to call you, but rather you call him as soon as possible and request the information about the "new trial drug" which you said he had talked to you about but perplexingly failed to discuss and pursue any further. It is essential to be very pro-active with the doctors and to obtain some type of systemic treatment for Mick to try to stabilize the progression of the disease and shrink/destroy the disseminated tumors before they become too large to successfully respond to treatment. Prior to beginning a systemic treatment, it seems that surgery or Gamma Knife should be used to remove/destroy the new tumor on Mick's head. Is the tumor on his skull or in the brain? Why can't the tumor in Mick's knee be surgically removed or treated with radiosurgery or radiofrequency ablation? If you can't get the answers and help from Mick's current doctors, I urge you to seek a consultation with another sarcoma oncologist, and not to wait until after the Holidays. Please keep the Board updated as you are able, and know that my most caring thoughts and very best wishes are with Mick, you, and your family. Take care dear Sheree.
With great concern, deepest caring, healing wishes for Mick, special hugs, and continued Hope,
Bonni

[DottyW]

Sherree,
I'm also very sorry to hear of Mick's disease progression. My daughter, Jordanne, just had a tumor in her femur removed at the beginning of November. She has had disease progression in her bone mets, including the skull, since being removed from the Cediranib trial at NIH in Maryland. She is hoping to be approved for a new international trial called CD44. I believe that this trial is also being done in Australia, possibly Sydney so it might be the trial that you doctor was referring to. So far, there are only a handful that have started and it does require a biopsy to make sure that his tumors are positive for MET. We already had typed some of Jordanne's other tumors so knew that hers were positive for both MET and Vegf, but the protocal required a new biopsy which she had done yesterday in Seattle. We are hoping that she will be starting on this trial on December 13th. I am posting a link to the trial info from Seattle Cancer Care Alliance so that you can talk to Mick's doctor about it.
http://www.seattlecca.org/clinical-tria ... 358903.cfm
I hope this will be of help to you.
Have a blessed Christmas and keep focusing on Hope.
Blessings,
Dotty W

[Sheree]

Hi well we have been to so many doctors and no one will do anything. Dr Stalley is a sarcoma spec but as he wrote surgery isnt an opition. We have been ringing but no return call just a letter to pretty much say to get back in contact with Mick's chemo doc and well no one will touch him. We have seen doctors from Brisbane all the way down to sydney i think about 6 all up. I feel like they have given up on him and its rippin me apart inside im just not sure how strong i can stay but ill just have to harden up alittle more lol.

I just hope a doctor reads this and offers help but thats just wishful thinking.

I wish you all well till next time we talk xxxxxxxxx

[DottyW]

Sherree,
It makes me very sad to hear this. I don't know what the medical community is like in Australia but I know that there are Drs here in the US that would confidently do the surgery. Dr. Ernest Conrad, here in Seattle, contact Seattle Cancer Care Alliance and Dr. Martin Malawer in Bethesda MD are 2 wonderful orthopedic oncologists who bravely do limb sparing surgeries and, I think they see these surgeries as challenges to rise to. Unfortunately, I'm sure that money may play a factor in all of this. Possibly you could ask Mick's oncologist to contact them. They maybe able to refer you to someone in Australia.
I investigated the trial that Jordanne is attempting to enter and must correct myself. It is not being done in Australia. The countries are the US (
Seattle and Houston) France and the Netherlands.
Japan also seems to be a place where they are doing a lot of study on ASPS.
I do not want you to give up hope.
The least I can do and also the best I can do is to pray that someone will step up to help you.
Blessings,
Dotty

[Bonni Hess]

Dear Sheree,
I echo Dotty's words and thoughts, and am Hoping that you will be able to find a doctor who is willing to recommend and/or provide some type of treatment for Mick. Have you given any consideration to the Cediranib Trial or other Clinical Trials at at NIH in Bethesda, Maryland, USA. I know that your living in Australia may provide financial and logistic issues, but it is my understanding that NIH provides flight and housing assistance for some Clinical Trial patients so it might be worthwhile for you to at least contact them to discuss Mick's situation. Did Dr. Stalley specify why surgery is not an option? Is it because Mick has so many disseminated tumors, or is it because the tumors are all unresectable? As Dotty said, there are some excellent surgeons in the United States who have performed successful surgeries to remove tumors which other doctors have said were unresectable. Dr Fritz Eiber in California is one of them. If Mick's brain/skull mets are not too large, they should be able to be successfully treated/destroyed with Gamma Knife or other radiosurgical procedures. Were these possible treatment options discussed with any of the six doctors who Mick has seen in Australia? I think that Mick and you have a right to insist that the doctors at least meet with you to discuss possible treatment options which may be available outside of Australia if they are not able to provide them for Mick there. Prior to Brittany beginning her Cediranb treatment 31 months ago, she had widely disseminated mets, an unresectable pancreatic met, and aggressive disease progression. Her doctors told us that there was no systemic or surgical treatment available for her, but we refused to accept that and through relentless research and searching we found the Cediranib Clinical Trial in Edmonton, Alberta. Hopefully you will be able to prove Mick's doctors wrong and you WILL be able to find an effective treatment for him. Please know that I and others on this Board are here to try to help in that endeavor with any shared information that we may have, keep Hope alive, and keep in touch with the Board as you are able.
With special hugs, deepest caring, healing wishes for Mick, and continued Hope,
Bonni

[Olga]

Just to comment on the participation in the Clinical Trials at at NIH in Bethesda - It is my understanding that the flight assistance is only provided from/to US destinations not for the outside of the country places, i.e. we could drive to Seattle and fly from there to get an assistance with the cost.

[Feng zhou]

Yes, NCI only provide to participate in clinical trials of patients the USA domestic air tickets. international air tickets do not provide.

[Bonni Hess]

Thank you for clarifying the issue about NIH flight assistance Olga and Feng zhou. Do you or does anyone else on the Board know if NIH provides housing assistance for international Clinical Trial patients as it is my understanding that it does for US citizens?
With special caring thoughts and continued Hope,
Bonni

[Feng zhou]

during treatment in NIH, NIH provides $50 per day housing assistance for international Clinical Trial patients.

[Sheree]

Hi everyone i hope your all doing fine.... Im so dont want to write this but Michael passed away on sunday 6th of May. We have just returned home fromhis funeral i really dont know what else to say. He was one amazing person my husband he was such a fighter. I just hope all of you that are still fighting keep fighting and i wish you all well...

Sheree and family xxx

[Ivan]

Sheree, so sorry to hear that. I hope that he didn't have to suffer much in his last days.

Exactly the same day as Sree..

[Olga]

Sheree, thank you for letting us know. It is very important for us that people do not just disappear from our community and their relatives allow us to say few last words. We are going to remember Mick, he was one of us.

[Bonni Hess]

Dear Sheree,
My heart is so very heavy with the devastating news of dear Mick's tragic loss following his very courageous seven year battle, and I so deeply share your profound grief and sorrow. It is so very kind and gracious of you to have somehow found the strength to write to share this information with us, as it was for you to faithfully update the Board for the past four and a half years during Mick's increasingly challenging battle. This is the news which I had Hoped would never come as I continued to hold on to Hope for Mick's healing. During the past month from early April to early May this insidious disease has now cruelly taken four of our ASPS Community members including dear Mick, Sree, Will, and a young woman who preferred to remain anonymous, and my heart is broken from the immensity of this terrible loss of so many precious young Lives. Dear Mick, you, and your family, and Sree,Will, and the anonymous young woman and their families have all been a very special part of our ASPS Family, and will remain so in our hearts, special memories, and most caring thoughts as we continue to fight this very challenging battle with all of you continuing to inspire us with the great strength, courage, and determination which you demonstrated and with which you fought.
May you find comfort in knowing that Mick is now at peace with his body free from this cruel disease and the suffering which it caused, and happiness in your cherished memories of him and the deep love which you shared which will Live on forever and always be a part of your Life.
Deeply sharing the immense sorrow of your beloved Mick's devastating loss with endless tears and deepest sympathy and caring for you and your dear family,
Bonni