Ivan rocking it since 2003

[ntran727]

So happy for you Ivan!! The adrenals insufficiency sounds like a combination of both but easily treatable so that’s good. Is the salivary gland problem still giving you symptoms? 26 months is a good run on the medication. I hope it continues to give you a sustained response.

[Olga]

Just to update on Ivan's post Keytruda treatment discontinuation since Feb.2020.
He continues to do very well after he stopped Keytruda voluntarily.
He had 4 scans done - 3 MRI - brain / abdominal / cardiac MRI and a chest CT with the contrast. All scans are good, some show almost complete resolution of the pre-treatment metastases, some no new mets. We have not seen the reports from the heart MRI and chest CT yet, just been told on the phone that the result is good, all stable, no growth (two last meetings with the oncologist are done on the phone to reduce the visits to hospitals). We routinely request the copies of the reports being send to us, so I am looking forward to enjoying the good read:)

Ivan is on the adrenocortical function replacement hormones permanently - fludrocortisone and hydrocortisone in the none-immune suppressive replacement dose. It is a price he had to pay for the 2 fairly large heart metastases to be gone. His immune system being without the brakes, attacked all his ASPS tumors but also attacked adrenals and his mouth, with xerostomia and many ulcers around it. We are dealing with the mouth problems pretty effectively now using locally immune suppressive mouth solution that only affects the immune system attack in the mouth. It works well and we are hoping the immune system eventually forgets or reconsiders to eat the skin inside the mouth.

[D.ap]

Hi Olga and Ivan 😊
Excellent news on the scans !
Truly happy to hear of almost complete resolution and no new mets!
What dose of adrenocortical is Ivan on?

[ntran727]

Such great news! So happy for you Ivan.

[Ivan]

I had mild symptoms of adrenal insufficiency back in the summer of 2017 for sure (ie postural hypotension, a symptom of insufficient Aldosterone). It is not at all clear whether my adrenal problems are ultimately caused by immunotherapy or not. Either way, it's a tricky thing to manage. For example, if it's hot I need to take more Aldosterone replacement. If I exercise more, I need to take more of both. It's hard to pick the dose sometimes. Anyway, it's still not as bad as diabetes at least.

July 2020 - feeling OK, if not perfect.

[D.ap]

Ivan
Truly glad to hear of your adjustments .
You have risen above a truly challenging set of issues .
Adrenal, heart mets. Having ASPS.😏

Our love , and certainly our hugs coming your way .

[Ivan]

It's been a pretty good summer for me. The latest abdominal & pelvis + brain + lung CT are NED.

The heart tumor is now reported as 1.1 x 0.9 cm on the cardiac MRI, which demonstrates a slow but steady shrinkage since I stopped Pembrolizumab.

I intend to reduce the scanning intervals a bit from 3 months to maybe around 4 or so. Some of these scans are a bit bothersome now that I do them in an N95 mask (3M 6200, no metal parts) on account of the COVID risk.

[D.ap]

Hi Ivan ,

Excellent news on steady reduction and most certainly NED with the ct!!

I like your thinking of moving to a 4 month schedule .

Really good to hear from you .

Ps wash those hands as well !👍🏼

[Bonni Hess]

Thank you for sharing this wonderful and VERY good and encouraging news dear Ivan :) Brittany is also on a four month schedule for her chest/abdominal pelvic scans which she just had done yesterday at SCCA in Seattle since she can't go to Edmonton for her Clinical Trial scans due to Covid. She is currently on a 6 month schedule for her brain and spinal MRI scans which are due this month. I will ,as always, post her scan results when we receive them. Take care and keep Covid safe. I devastatingly lost my beloved oldest brother to Covid 8 weeks ago today because a restaurant server in Montana didn't wear a mask. I am very grateful that you wear a mask during your scans. Hospitals and medical facilities are dangerous places for increased Covid risk especially for those who are immune compromised like ASPS patients. Sharing the great joy of your NED scans and continued disease stability with greatest happiness, special celebration, and continued Hope, Bonni

[Ivan]

Thank you for sharing this wonderful and VERY good and encouraging news dear Ivan :) Brittany is also on a four month schedule for her chest/abdominal pelvic scans which she just had done yesterday at SCCA in Seattle since she can't go to Edmonton for her Clinical Trial scans due to Covid. She is currently on a 6 month schedule for her brain and spinal MRI scans which are due this month. I will ,as always, post her scan results when we receive them. Take care and keep Covid safe. I devastatingly lost my beloved oldest brother to Covid 8 weeks ago today because a restaurant server in Montana didn't wear a mask. I am very grateful that you wear a mask during your scans. Hospitals and medical facilities are dangerous places for increased Covid risk especially for those who are immune compromised like ASPS patients. Sharing the great joy of your NED scans and continued disease stability with greatest happiness, special celebration, and continued Hope, Bonni

So sorry to hear about your brother, Bonni. I am not sure what additional risks COVID poses to me considering my history, but I'm being extra careful. I won't be eating out until after the vaccine is in play.

[Bonni Hess]

Thank you for your kind words of sympathy for the devastating loss of my beloved brother to Covid dear Ivan. I am grateful that you are being Covid safe. Covid is very real and tragically very dangerous especially for those with underlying conditions and compromised immune systems like ASPS patients. With special caring thoughts and continued Hope, Bonni

[Ivan]

Hello, ASPS friends

The last round of scans MRI: brain, cardiac, abdomen and CT: lungs were completed in January-Feb. I have now received word that everything is excellent, and there are no concerns. There was a note on the CT scan about one enlarged lymph node in the mediastinum, but it's not concerning considering NED elsewhere in the chest. The cardiac MRI which was done later noted that lymph nodes appeared normal.

This month marks one year since having stopped immunotherapy, and over 3 years since having started it. My overall condition is quite good. The only issue I have currently is a less than idea sleep quality. I've always slept very well, but even since getting Addison's Disease about a year ago has had issues with night time awakenings and sleep that is insufficiently deep. This does impact my cognitive performance. However, it has gotten better compared to the worst of it in the past.

[D.ap]

Hello Ivan,

Truly glad to hear of your scan reports !
Do you feel the lymph node is probably the result of the Addison’s disease ?
How hard is it to control your cortisol levels ?
I’m sure glad to hear of your feelings of the worst is behind you.😊
Take care .
Love,

[Ivan]

Hello Ivan,

Truly glad to hear of your scan reports !
Do you feel the lymph node is probably the result of the Addison’s disease ?
How hard is it to control your cortisol levels ?
I’m sure glad to hear of your feelings of the worst is behind you.😊
Take care .
Love,

The only real issue is replicating the circadian rhythm during the night. Daytime, it's not too bad. The standard dosing is a complete failure. I take it 8 times per day and appropriate amounts to approximate the normal fluctuation.

[D.ap]

Hello Ivan,

Truly glad to hear of your scan reports !
Do you feel the lymph node is probably the result of the Addison’s disease ?
How hard is it to control your cortisol levels ?
I’m sure glad to hear of your feelings of the worst is behind you.😊
Take care .
Love,

The only real issue is replicating the circadian rhythm during the night. Daytime, it's not too bad. The standard dosing is a complete failure. I take it 8 times per day and appropriate amounts to approximate the normal fluctuation.

Hi Ivan ,
I’m assuming that it’s the corticosteroids you are talking about ,that is causing insomnia and or are taking 8 times a day. And rather than taking it in the morning you are spreading it out over the day time ?

This is an article I found back in 2015 when Josh worked night shift, to help reset his sleep cycle and to help him regulate his circadian rhythm .

Hope it helps

https://health.usnews.com/health-news/f ... our-health