Ivan rocking it since 2003

[D.ap]

Ivan
Excellent news!
How long have you been on Keytruda now ?
What contrast are they using ?

[Ivan]

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 out to embrace you with happy hugs, special caring thoughts, and continued Hope, Bonni

Thanks, Bonni.

[Olga]

I want to comment on the no side effects statement. There are numerous blood work abnormalities that Ivan is having during his Keytruda treatment, we always are very vigilant and try to address them although some of them are very puzzling and no one have any clue why are they out of range - there were few out of range during this time - I list only some of them:
- very high potassium;
- high LDL Cholesterol;
- high RBC;
- borderline high Creatinine; Edit from Ivan not a problem whatsoever https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2579448/ is the actual reason
etc
The LNR (Lymphocyte to Neutrophils ratio) thankfully stays lower than 2 all the time although sometimes it starts to rise, now it fell to 1.29
But overall the side effects were very mild for Ivan. The salivary glands failure was very alarming but it improved somehow with us only managing the symptoms plus the strict hygiene procedures, without addressing the underlying reason. Of interest was the fact that there were no autoimmune antibodies found during the investigation ordered by the rheumatologist. I found a small study that under the ICI treatment the symptoms might be of classical autoimmune/rheumatic attack but the antibodies are only found in half of the cases. But it is really statistically insignificant due to a small number of the patients studied, they mostly report the symptoms like dry mouth or joint/muscles pain or high potassium (hyperkalemia) without looking for the underlying cause. Every lab abnormality means something but they often have no clue.

[Bonni Hess]

Thank you for the additional shared information Olga. I assume that Ivan's blood glucose level is also being monitored since diabetes is a reported side effect of Keytruda. A Keytruda patient on the Facebook ASPS site is having a successful response to his Keytruda treatment with shrinkage and disappearance of his lung mets, but has unfortunately now developed diabetes for which he is being treated with medication and diet and exercise changes. As with all of the promising new ASPS treatments, there remain many unknowns in terms of long term side effects of the treatments because they have not been in use long enough for documented information to be available. I am very grateful that thus far Ivan is tolerating his Keytruda treatment very well with minimal side effects. With special caring thoughts, warm friendship, and continued Hope as we continue this long challenging journey together, Bonni

[Ivan]

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 adrenal glands potentially not making sufficient Aldosterone.

I have some minor rash issues which are possibly related to PD-1, but who knows. I got a small area of skin which has lost pigment (this is called vitiligo), but fortunately it's in the part of the body that's always covered by clothes.

[Ivan]

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 year or so. I have to take cortisol & aldosterone replacement daily. Will monitor to see if this is autoimmune and whether it comes back, but otherwise I'll have to keep taking the replacement for the rest of my life.

Overall, I am feeling well and life is good.

[D.ap]

Ivan ,

I’m overjoy to hear of your news!!
The adrenal issue was from the Keytruda ?
Will link folks to your journey on Keytruda 😊

viewtopic.php?f=4&t=66#p85


Will echocardiograms be performed routinely as well ?
Love ,

[Ivan]

Ivan ,

I’m overjoy to hear of your news!!
Will echocardiograms be performed routinely as well ?
Love ,

No, just cardiac MRI. They are higher resolution and more detail. The only thing is, they take like 1.5-2 hours LOL...

[D.ap]

Hey there 😊
The gated MRI ?
Thanks for the update !

[Ivan]

Hey there 😊
The gated MRI ?
Thanks for the update !

Yes, the one with EKG synchronization and 100 breath holds.

[D.ap]

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 year or so. I have to take cortisol & aldosterone replacement daily. Will monitor to see if this is autoimmune and whether it comes back, but otherwise I'll have to keep taking the replacement for the rest of my life.

Overall, I am feeling well and life is good.

Ivan remind us how adrenal insufficiency may of possibly happened ?

[Ivan]

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 year or so. I have to take cortisol & aldosterone replacement daily. Will monitor to see if this is autoimmune and whether it comes back, but otherwise I'll have to keep taking the replacement for the rest of my life.

Overall, I am feeling well and life is good.

Ivan remind us how adrenal insufficiency may of possibly happened ?

Adrenal ablation 2014 (L), 2015 (R). L is gone, R was likely half gone. Was fine for 2 years after.

Could be delayed insufficiency from surgery, could be autoimmune from PD-1. Could be a combination of the two.

[D.ap]

👍🏼
Thank you Ivan
We are still on Keytruda and have had prior reports of adrenal gland reduction reports in 2016 , with Opdivo .

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 includes pituitary notations. Another place of tumor issues .

Gods speed for continued good reports .💕

[Ivan]

👍🏼
Thank you Ivan
We are still on Keytruda and have had prior reports of adrenal gland reduction reports in 2016 , with Opdivo .

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 includes pituitary notations. Another place of tumor issues .

Gods speed for continued good reports .💕

Oh yeah? Make sure you get Cortisol & Aldosterone measured pretty regularly then.

[Olga]

To add more information: the decision to discontinue this treatment for now was made voluntarily, after the last 4 scans done in Jan. and Feb. 2020 showed stability (cardiac MRI, CT scan) or no sign of mets anymore (brain and abdominal MRI). Ivan was on Keytruda monotherapy for more than 2 years. At this point the chances are high that his immune system has already formed the tumor specific response, and we want to limit the autoimmune side effects that developed - the immune system has already attacked the adrenals and the salivary glands.