Search found 650 matches
- Sun May 03, 2020 11:32 pm
- Forum: Keytruda
- Topic: Elisa on Pembrolizumab / Keytruda
- Replies: 33
- Views: 11720
Re: Elisa on Pembrolizumab / Keytruda
I'm sorry to hear that you, like me, have a heart metastasis. However, I am glad to hear that you were able to successfully stop and restart PD-1 :) 1) Eat lots of fiber 2) Take vitamin D 3) Get lots of sleep 4) Do cardio 5) Lift some weights to gain muscle If that can all be done, I bet you're gonn...
- Sun Feb 23, 2020 12:00 am
- Forum: Personal Stories and Updates
- Topic: Ivan rocking it since 2003
- Replies: 662
- Views: 270989
Re: Ivan rocking it since 2003
👍🏼 Thank you Ivan We are still on Keytruda and have had prior reports of adrenal gland reduction reports in 2016 , with Opdivo . https://cureasps.org/forum/viewtopic.php?f=4&t=750&p=10252&hilit=Adrenal#p10252 We will report to the powers that be . Also make sure your MRI of brain includ...
- Sat Feb 22, 2020 5:15 pm
- Forum: Personal Stories and Updates
- Topic: Ivan rocking it since 2003
- Replies: 662
- Views: 270989
Re: Ivan rocking it since 2003
I have discontinued PD-1 after 26 months with sustained response. If there's a recurrence, I intend to resume it. I'll keep getting brain / abdominal / cardiac MRI and chest CT every 3 months or so for now. Presently, the main problem I have is adrenal insufficiency that has developed over the last...
- Sat Feb 22, 2020 2:51 pm
- Forum: Personal Stories and Updates
- Topic: Ivan rocking it since 2003
- Replies: 662
- Views: 270989
- Sat Feb 22, 2020 2:47 pm
- Forum: Personal Stories and Updates
- Topic: Ivan rocking it since 2003
- Replies: 662
- Views: 270989
- Sat Feb 22, 2020 2:42 pm
- Forum: Personal Stories and Updates
- Topic: Ivan rocking it since 2003
- Replies: 662
- Views: 270989
Re: Ivan rocking it since 2003
I have discontinued PD-1 after 26 months with sustained response. If there's a recurrence, I intend to resume it. I'll keep getting brain / abdominal / cardiac MRI and chest CT every 3 months or so for now. Presently, the main problem I have is adrenal insufficiency that has developed over the last ...
- Mon Nov 25, 2019 12:12 am
- Forum: Personal Stories and Updates
- Topic: Courtney from Pittsburgh PA
- Replies: 13
- Views: 4365
Re: Courtney from Pittsburgh PA
Ps I like this utube presentation by Dr.Kevin Jones . He and others of the Utah institute , help to discover the lactate transport that ASPS can utilize in its progression . https://m.youtube.com/watch?v=fVKiQnOCsU0 This is kind of weird. ASPS primary may grow in high lactase areas. But primary isn...
- Thu Oct 17, 2019 3:04 pm
- Forum: Personal Stories and Updates
- Topic: P from Thailand - Dx 2016 at 13 yrs old
- Replies: 53
- Views: 27013
Re: P from Thailand - Dx 2016 at 13 yrs old
Hi Debbie, Thank you so much ..and really great to hear your son is healthy .. Hi Olga, The primary 3x3x4 cm was resected and Rt by 6 months 2016 before chemo. Before Pet scan , we done lung Ct which they were reduced in size from 0.4 cm to 0.1 cm , no new met and other scan shown clear and PET sho...
- Tue Aug 27, 2019 12:04 am
- Forum: Personal Stories and Updates
- Topic: Domenic from Vancouver Dx 2018
- Replies: 5
- Views: 2555
Re: Domenic from Vancouver Dx 2018
I just want to tell everyone that Domenic has successfully undergone surgery as planned and is recovering well.
- Mon Aug 26, 2019 10:42 pm
- Forum: Rest In Peace
- Topic: Jussi from Finland - Dx 2008 - 30.3.1991 - 23.8.2019 R.I.P.
- Replies: 845
- Views: 217606
Re: Jussi from Finland - Dx 2008
It's truly a tragedy. Especially considering Jussi & family did pretty much everything that could have possibly been done. He tried many things, and has advanced our understanding by his example. He was always nice to talk to. It was a long journey for him. At least his suffering is also finishe...
- Thu Aug 22, 2019 4:24 pm
- Forum: Personal Stories and Updates
- Topic: Ivan rocking it since 2003
- Replies: 662
- Views: 270989
Re: Ivan rocking it since 2003
Other than the high potassium levels which I keep having issues with, everything is well. The cardiac MRI shows continued stability, trending towards very slow shrinkage. I am consulting an endocrinologist regarding the potassium issues. I have a suspicion that it has something to do with my damaged...
- Thu Jul 25, 2019 11:07 pm
- Forum: Personal Stories and Updates
- Topic: Larry from Buffalo --Dx Sept 2011
- Replies: 46
- Views: 32411
Re: Larry from Buffalo --Dx Sept 2011
Hi everyone. Thought I ought to reply since I haven't written in quite a while. I contacted one of the doctors who did the cryoblation but he didn't think he would be able to do it and suggested Dr. Rolle, who had already said my mets were too large for him. So I started the clinical trial at NIH -...
- Fri Mar 08, 2019 10:34 am
- Forum: Personal Stories and Updates
- Topic: Nhi from NY - Dx June 2016
- Replies: 299
- Views: 96036
Re: Nhi from NY - Dx June 2016
Also, off label is way better than trial. No need for unnecessary biopsies etc. More flexibility with treatment without being taken off etc.
- Fri Mar 08, 2019 10:33 am
- Forum: Personal Stories and Updates
- Topic: Nhi from NY - Dx June 2016
- Replies: 299
- Views: 96036
Re: Nhi from NY - Dx June 2016
This is a tricky situation. Please find out the approximate date of growth of this met. I would contact Dr Littrup as a backup. If he says yes than perhaps we can think about it. If he says no, there's nothing to think about.
- Wed Mar 06, 2019 12:26 pm
- Forum: Personal Stories and Updates
- Topic: Ivan rocking it since 2003
- Replies: 662
- Views: 270989
Re: Ivan rocking it since 2003
Since Dec 2017. Gadolinium I believe. ALL GOOD NEWS Ivan!! Thank you for sharing and providing strengthened Hope to those of us in the ASPS Community. CELEBRATING with you and your family, Hoping for continued good scan results with more met shrinkage/disappearance and stable disease. and reaching o...