Sree from India (now USA) - Dx 2008 - RIP 03/05/2012

[Arch]

Dear Bonni,

As always, thanks so much for your care and warm wishes.

Arch

[Amanda]

Hello Arch
I am worried we have not heard a word from you in a lil while. I hope that all is well please when you can post let me know how you are or send me an e mail when you can

[Amanda]

Arch,
I am worried and miss your posts So mant new paitents and so much going on and I find myself every time i come here wishing I would see some information from you on how you guys are doing.. Please, when you have free time post.. I hope you are all welland i hope you read this and respond soon...

[Arch]

Dear Amanda, Bonni and all others here at CureASPS,

Wish you all peace and good health in 2012. Really hoping and praying(big time) for a cure for ASPS this year.

I'm sorry for not being in touch for so long, allthough I didn't post here, you have all been in my thoughts(all the time). I tried to stay away from this forum and tried not to discuss or think too much about this disease, that was probably my way of trying to cope with all the stress this disease brings, but I realise I just cannot get away from it. Allthought I didn't talk, I had been thinking about it all the time..

We continue to fight this disease with everything we've got. If anything positive would have come out of his trials, I would have defintely shared it with all of you. Sree got off Dasatinib and is on pazopanib..we'll probably have to look at something new next month. He has not been able to maintain his weight, he's now less than 100 pounds, weak..his fighting spirit and humor is intact.

I see a lot of new people here in the forum. Will read all your posts. I send my sincere wishes to all you brave men and women who are fighting this demon and those amazing people who choose to share this journey with their loved ones.

Regards
Arch

[Bonni Hess]

Dear Arch,
It is such a great relief to hear from you and I am so deeply grateful for your thoughtful update and shared information. You have certainly been missed on this Board, but I was Hoping that no news was good news and that you and Sree were doing well and just enjoying Living Life instead of Living cancer. I am so glad that Sree's fighting spirit and humor remain strong despite his difficult physical challenges, and that you both are continuing to aggressively fight his disease with shared determination and perseverence. I am so very sorry and disappointed that the Dastanib was unsuccessful for Sree, and that he will probably soon be discontinuing the Pazopanib also. Is the reason for him planning to discontinue the Pazopanib because it has been unsuccessful in stabilizing his disease progression and shrinking his tumors, or because of his very concerning weight loss, or both? Has any consideration been given to a temporary feeding tube to try to stabilize his weight loss and increase his strength and immune system so that he can better fight his disease? I know that this is being considered for another patient on this Board who is also experiencing significant weight loss and weakness. Also, since Sree has heartbreakingly had unsuccessful responses to targeted VEGF drugs including Cediranib, Sutent, Dasatanib, and apparently now Pazopanib, is a change to a different type of targeted drug such as a Met inhibitor being considered? Did he ever have his tumor tissue tested to try to determine what kind of drugs might be more effective for his ASPS? In Brittany's case, her tumor tissue tests showed a much higher level of VEGF than Met which may explain why she has had a more successful response to Cediranib than Sree and some of the other ASPS patients. I know that there are a couple of patients who have previously participated on this Board who are, or will soon be, participating in the combination Pazopanib Trial at NIH. It would be very helpful and deeply appreciated if you could provide some information about Sree's Pazopanib experience and results when your time and situation allow. In the meantime, please take good care of yourself dear Arch, give Sree and yourself gentle hugs from me, know that you are both always held very close in my heart and my most caring thoughts, and keep in touch as you are able.
With immense gratitude for your thoughtful update, deepest caring, Healthy and Happy 2012 best wishes for Sree, you, and your family, and continued Hope,
Bonni

[Amanda]

ARCH <3
I am so glad you posted and i do understand trying to not flood yourself with the forums and e mails and face book... If you ever need me as you know you can call me! You are not alone! Are they doing any thing to help him gain weight? Is it because he doesnt want to eat? If so there are shakes that may work.. Let me know i will lok for you What drugs are you looking to go to now? Jem that was also on the Dec trial is now also not stable and looking for another option. Is there any thing I can do to help you?

[Arch]

My husband Sreedhar Ramakrishnan(Sree), passed away on Thursday May 3rd at 12:45pm at the University of Michigan Hospital at Ann Arbor.

Here are the detail for the funeral.

Visitation on May 5th (Saturday) from 12-1PM at:
Oakhill Cemetry
255 south ave
Battle Creek, MI 49017

Followed by a Hindu ceremony and cremation

[Olga]

Arch, I am very sorry to hear that. Thank you for finding the will to post here during this very hard time for your family.

[Arch]

Sree’s health had been slowly detoriating for the last year or so.We aggressively pursued all possible treatments and in spite of our best efforts, his lung tumors were progressing. The treatments with various TKIs could only slow the progression at best but nothing could stop or shrink the tumors. His lung tumors had grown to a point where there wasn’t enough healthy lung tissue to function normally and Sree was on oxygen therapy since Feb 2012. Sree had been so weak that he needed help with all his day to day activities and had lost considerable weight. Somewhere in April, his oxygen therapy which had been on a need basis became a 24X7 requirement.
Sree had been in the critical care medical unit at UM hospital for his last 2 days, inspite of their efforts, the CO2 levels in his blood was increasing.
He was not in pain when he passed, he had been in a deep sleep.

Inspite of the aggresive nature of his disease, his disease did not spread beyond his lungs.
I appreciate all the help and support that we got from this forum, the last few months have been difficult and I could not post updates here. But I wanted to share the above information, just incase it is of any help for anyone here.

Hugs to all other ASPS warriors.Sree lost his battle but I hope some day the rest of you win this war.

[Ivan]

Thank you for this info, Arch. Can you post a photo of Sree so that we have something to remember him by?

[Olga]

Arch, thank you so much for posting this info. I posted a question in my previous post asking you about the actual clinical info re. what exactly happened to Sree and later removed it as it looked to intrusive. I am so grateful for your understanding. It is really comforting to know that he was not in pain when he passed being in a deep sleep. He was so fortunate to have you by his side in this battle.

[Arch]

His sweet smile and warm personality will be missed for ever....
Sree never complained about anything and continued to work till the last week. Allthough he could not go to work since Feb, he continued to work from home. Even when his friends came to visit him on Wednesday, the day before he passed, he was discussing work. He had accomplished so much in such a short life. He was a senior manager at Accenture and was the solution architect of the SAP TPM implementation at Kellogg.

I can't even begin to say how much I miss him...

[Kathy]

I am so very sorry to hear this. I say a prayer every time I log on, hoping with all my heart that everyone is ok. I admire you and Sree so much and please know We are keeping you and everyone here on this forum in our prayers.

[Bonni Hess]

Dearest Arch,
Having been away from the computer for the past several days, I just now read your devastating update about dear Sree's tragic loss. My tears are endless, my heart is heavy with immense sorrow, and I so deeply share yours and your family's profound pain and grief. Sree and you have been a very special part of our ASPS Family for the past three+ years, and I have closely followed Sree's courageous battle through your faithful updates and our personal communications with each other. When your updates became more infrequent during the past year, I held very tight to Hope that no news was good news, but feared that Sree was experiencing increasing challenges from this insidious disease which has now so devasatingly taken him from this World, but can never take him from our hearts and our memories. Although I never had the privilege of personally meeting Sree, I felt that I knew him through your loving descriptions of him. Thank you for somehow finding the strength in the midst of your grief and sorrow to write and share this profoundly difficult news with us, and for so graciously sharing more information about dear Sree, his increasingly diffcult ASPS journey, and the handsome picture of this incredible young man who will continue to be an inspiration to everyone in our ASPS Family.
Sree was so fortunate to have your dedicated care, strengthening support and encouragement, and deep love dear Arch, and surely all that love could do was done. Please know that Sree, you, and your family will continue to be held very close in my heart, and please feel my arms reaching out to hold you during this time of such great loss and sorrow.
Sharing your immense sorrow with an aching heart filled with deepest caring, sympathy, friendship, and love,
Bonni

[Amanda]

Arch! :*(
I just saw your FB post to me and I am numb.. This is the second person in the last month!
As i said i send you love and i really have no words that would fit to explain how sad i am hearing this news! I believe he is at peace in a beautiful place now!
I am here if you need to talk... I hope that you have friends and family around you to help! Love to you an the lil ones! An love to Sree!