Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I sent an e-mail to him cople of weeks ago, got an automated reply that he is away for the vacation. Sent it again yesterday, awaiting for the reply.

Happy Valentine's Day to you and Ivan dear Olga, and thank you for your prompt response and shared information. Hopefully someone will have some answers regarding Dr. Rolle's rumored retirement soon!
With warm Valentine's hugs, special caring thoughts, and continued Hope,
Bonni

Regarding Dr. Rolle - that's interesting to hear…so I guess we will wait and see whether he's really retired or not.

Thanks Bonnie for the advice on the contrast for chest CT. I will ask for contrast next time I get my chest CT.

Jen
Great news on the reduction of the tumors
Hope you were able to enjoy a beautiful valentines day as you so deserve

Love
Debbie
Ps 35 degrees Fahrenheit today and sunny But I am thankful we have heat

Jen
Did they choose to re stage on the left because of the tumors location on the heart side ?
Is that where the proposed SBRT was to be performed ?

I aggree with Bonni. You need to know how your right side lower ? is doing with the sutent treatment
That is where your first tumors were radiated ?
With the larger tumors becoming over a cm they need to be taken care of sooner than later
When was your last brain scan ?
Enough nosey question.
Write when it's good for yo
Love
Debbie

Hi Jen,
Great news on Sutent! Wish it will continueous to work to shrink the lung mets and you can deal with the side effects well.

Regarding to Dr. Rolle's retuirement, one of the Chinese patient just had the laser surgery in Mid Jan, 2014. Another Chinese patient just arrived the hospital last week. They contacted me during the period, but they didn't mention about the absence of Dr. Rolle.
But when I was there in Sept 2013, I notice there is a commission notice of all the doctors in that hospital--Dr. Rolle will be hired until 2017.

Anyway, I will ask the patient there to confirm the rumor and update to you.

Best regards,
Lynette

Hi Jen and all friends,
I just get back from the father of one of the ASPS patients in Coswig now. Dr. Rolle is in the office now, they can see him everyday.
There maybe some problem with his mailbox. I would recommend you to contact his secretary as well.

Regards,
Lynette

Hi Jen

Hope the news of Dr Rolle has sunk in.. We as a family are relieved as we need to use Dr. Rolles services in the near future.
Please at the very least send in your scans so as to get in line for review??

Thinking of you always

Love.

Debbie
Ps 29 degrees Almost March and gardening weather. Thinking of greens.

Hi everyone,

Sorry I have been so busy I haven't been on the site in awhile.

Thank you Lynette and Debbie for the GREAT news about Dr. Rolle. Such a good relief that he's practicing until 2017!! Now that I'm on medicare, I might hold off on trying and taking a new drug after Sutent stops working (I am currently on my 4th month of Sutent)…that way I can save $5K plus in expensive Tier 4 drug costs (about 4 month supply) to put towards the lung surgery (assuming Dr Rolle accepts me after reviewing my scans and history). Does Dr. Rolle's secretary have the same contact info? Can someone send me her contact, I might have misplaced the info in my massive email inbox. I now have all my scans and reports ready to send to Germany.

So as I mentioned, still on Sutent. Will have another Chest CT scan With and without contrast in May. Will also do an abdominal/pelvis CT w/wo contrast and a leg CT (primary tumor was in thigh area).

Last abdominal / pelvis CT scan with contrast was in October 2013 with clear results.
Last MRI brain scan was in June 2013 with clear results.
Last full body bone scan was in September 2013 with clear results.

I think I'm pretty up to date with my scans…let me know if I'm missing anything.

Thank you ASPS family for all the support…can't do this without you guys. <3 <3

PS. Weather in LA has been nice as per usual…mostly in mid 60s-70s the past few days…last weekend it was 85 Santa Monica Beach area was super packed!

Just wanted to share a funny, cute pic of my pomeranian, Kiwi she makes my day.

I recently added all the info about initial steps to get evaluated by Dr.Rolle here at the:
http://www.cureasps.org/forum/viewtopic.php?f=51&t=865
ask if you need more info, good luck,
Olga.

jenhy168 wrote:Hi everyone,

Sorry I have been so busy I haven't been on the site in awhile.

Thank you Lynette and Debbie for the GREAT news about Dr. Rolle. Such a good relief that he's practicing until 2017!! Now that I'm on medicare, I might hold off on trying and taking a new drug after Sutent stops working (I am currently on my 4th month of Sutent)…that way I can save $5K plus in expensive Tier 4 drug costs (about 4 month supply) to put towards the lung surgery (assuming Dr Rolle accepts me after reviewing my scans and history). Does Dr. Rolle's secretary have the same contact info? Can someone send me her contact, I might have misplaced the info in my massive email inbox. I now have all my scans and reports ready to send to Germany.

So as I mentioned, still on Sutent. Will have another Chest CT scan With and without contrast in May. Will also do an abdominal/pelvis CT w/wo contrast and a leg CT (primary tumor was in thigh area).

Last abdominal / pelvis CT scan with contrast was in October 2013 with clear results.
Last MRI brain scan was in June 2013 with clear results.
Last full body bone scan was in September 2013 with clear results.

I think I'm pretty up to date with my scans…let me know if I'm missing anything.

Thank you ASPS family for all the support…can't do this without you guys. <3 <3

PS. Weather in LA has been nice as per usual…mostly in mid 60s-70s the past few days…last weekend it was 85 Santa Monica Beach area was super packed!

Jen

Busy equals good for the soul !
Glad to hear it
The scans look good.
Send those scans soon. If accepted dr Rolle is a busy guy so the sooner the better
Soooo glad to hear from you !

And what a cutie Kiwi is. Dogs are definently good for the soul
Thanks for sharing

Much love
Debbie
Ps only 46 degrees high today. The good news it's spring !

Happy April Jen!

Just checking in to see how things are in your neck of the woods?
Write when is good..

Love
Debbie

Hello Jen
You are so quiet is all ok? June gloom is sucking isnt it lol
Also have you ever met with Dr Suh at UCLA an if so do you like him ?

jenhy168 wrote:Just wanted to share a funny, cute pic of my pomeranian, Kiwi she makes my day.

Jen where are you lady :/
I am getting worried!
If you are busy please have Kiwi reply to me lol
I wanted to tell you that there is a dog that looks just like Kiwi on a show i watch an he is so dam cute!

Well, i hope Kiwi replies soon an then when oyu have time say hello <3

Isn't the weather awesome!

BTW what are you doing for the 4th?