Joshua on Opdivo-compassionate use

[D.ap]

So it goes
As of April 2017 because radiologist didn't expand on the July report -- stable see prior report --

"Our liver tumors are 9 and 12 mm, and the 4.1cm ablated liver tumor is the same noted size from January .
Adrenal is still at 1cm"

[ntran727]

I keep missing these posts about Josh because it is here and not in the main page. Stable is good! How is Josh doing on the medication?

[D.ap]

Hello Nhi

Report on April 18 2017

"Hi Bonni
As he has become more active with summertime activities and ,as I forgot to mention , as his thyroid became normal with his last thyroxine testing ,he has dropped a couple pounds but is very much keeping the majority of his weight gain .

He is currently 125lbs. 10 lbs below his average adult weight prior to the last qrt of 2015 and the admistering of
Sutent.

He has experienced some upheaval of night time /day time schedules and is working on regulating it with more routine activities .
In spite of having Opdivo on board we had a bout with respiratory beginnings of a lung infection ..colored towards the green side in dec / Jan but have returned with the aid of a Zpack. One dose . "

He's having some joint neck stiffness
That's all that I can think of at the moment

[D.ap]

Hello all,

Update with December scans -
Stable/slight shrinkage.


Josh had his 31st infusion just this week , and has officially returned to his normal weight , as well!

Thyroid has returned to normal however he is experiencing joint pains as well as neck pains .

His doctor has his Opdivo dosed at 190mg which calculates to 3mg/per kg and will keep him at the dose per kilogram
till we see how the joint pains do.
240 can be the top end of dosing .

As you all may know, Bristol Myers Squibb has been given the go a head by the FDA for once month dosing of 490mg, for all cancers.

We are staying with every 2 weeks at 190mg.

http://www.cureasps.org/forum/viewtopic.php?f=82&t=1502

Till next time
Love
Debbie

[Bonni Hess]

Thank you for sharing this VERY good and encouraging news dear Debbie. I am SO grateful that dear Josh's most recent December scans showed continued disease stability with some met shrinkage, and I am SO happy that his weight and thyroid have now normalized. What type of scans is he having and how often are they being done? I am sorry that he is experiencing joint pain which, based on my observations of other patients being treated with ICI drugs like Opdivo and Pembrolizumab (Keytruda), unfortunately seems to be a somewhat common side effect, although I am personally unaware of anyone else who has experienced neck pain. How much longer will Josh be taking the Compassionate Use Opdivo, or will he remain on the treatment indefinitely as long as it is providing stabilization of his disease and met shrinkage? Take care dear Debbie and feel the embrace of my shared joy, happy hugs, special caring thoughts, warm friendship, love, and continued Hope, Bonni

[D.ap]

Hello Bonni

We talked of the lack of evidence based data showing the discontinuing of ICI's with ASPS and for now we will be continuing to take it til ?
Our doctor has knowledge of folks being on opdivo for up-to 4 years with continued success ,(stability and or shrinkage, I'm not sure of).

Our scans are every 3 months with chest,pelvic and brain scans being performed.
I believe we are due for a bone scan soon and we have discussed the electrocardiogram need.

Thank you for your well wishes.
Love
Debbie

[Olga]

Deb, good to hear that the response continues even with the treatment interruption, lower dose might be the same effective - these drugs work differently.
Re. joint pain - perhaps this is a rheumatic immune-related adverse events (irAEs) read this article
Rheumatic disorders associated with immune checkpoint inhibitors in patients with cancer-clinical aspects and relationship with tumour response: a single-centre prospective cohort study.
https://www.ncbi.nlm.nih.gov/pubmed/29146737
Paradoxically, Josh prognosis improves with this type of adverse effect emergence!

[D.ap]

Wow

Thank you Olga.

Interesting read. I knew that arthritis is an autoimmune disease, but never had researched it beyond that .
There have been other patients on various ICIs complaining of the same pains . Some has discontinued their Med and others have used low doses of steriods while continuing the ICI, all the while continuing to see stability and or shrinkeage.

[Bonni Hess]

Dear Debbie, I personally agree with the decision for Josh to continue taking the Opdivo as long as he is having a successful response with stable disease and tumor shrinkage, he is tolerating the side effects of the drug, and he can continue to receive the Opdivo through his Compassionate Use arrangement with the pharmaceutical company . As with so many of these promising new drugs, there is not yet enough documented data and information available to determine the ultimate outcome of discontinuing the drugs even if the disease seems to be showing sustained stability. We face the same difficult dilemma with Brittany's now eight and a half years of Cediranib treatment, but are unwilling to jeopardize her disease stability and risk possible rebound and disease progression by her discontinuing the Cediranib. There are still too many unknowns, and Brittany continues to be a pioneer in the use of this drug as the Cediranib patient with the longest sustained disease stability in the World to our and the doctors' knowledge. Thank you for your very interesting shared article Olga on the irAEs and the relationship with tumor response. I continue to be very perplexed and frustrated that the several other ASPS patients who are being treated with ICIs who post on the ASPS FB site, don't/won't participate and share their invaluable anecdotal treatment information on this Forum so that their treatment experiences and results could be more easily followed on the specific ICU Board topic instead of in random unorganized FB posts. Regarding some of the side effects of the new systemic treatments such as the ICI associated joint pain, interestingly, when Brittany first began her Cediranib treatment, she developed striations on her fingernails which Dr. Sawyer said had been shown to be indicative of a successful treatment response in some other patients. Brittany's fingernail striations ultimately disappeared which concerned us that it might mean that the Cediranib was no longer working, but VERY thankfully her successful treatment response has continued thus far. As with everything with this poorly understood disease and the currently available treatments, there remain SO many questions and TOO many unknown answers, but each day seems to bring more Hope that those answers WILL be found. With special caring thoughts, healing wishes, and continued Hope, Bonni

[Olga]

Deb, also read this very relevant post by Brittany Sullivan from Monday, January 29, 2018:

http://johnandbrittanysullivan.blogspot.ca/

[D.ap]

Thanks for the blog link , Olga.
I had forgotten about Brittany Sullivan’s dairying .

It is an inspirational read and sure is always been our wish ,as I’m positive everyone else, of having ASPS becoming a chronic disease.

[arojussi]

Trying to figure out if Josh had complete response and scans just show remaining scar-tissue. Of course there is no way to be sure, so continuing opdivo is most likely best. Naturally 6.3 cm lung met wont just go away without leaving a scar-tissue. Immunotherapy doesnt clear scar-tissue, but over time scar can slowly Shrink. Also it is possible, that there is still living cancer and immunesystem is just controlling it.

In theory if remaining mets are big enough to be seen in pet-scan, that can identify if remaining lesion is metabolically active. If lesion is metabolically active then it is most likely living cancer and immunesystem is just keeping it under control. Of course you should continue opdivo either way so pet-scan would just satisfy our curiosity.

[D.ap]

Thank you all so very much ,for your input.
Josh has continued on Opdivo with continued slight reduction , stability and the report of no new tumors .
In good spirit .

Will update when time allows .

All, keep the faith .
Love

[arojussi]

Thanks and congratulations.

[D.ap]

Hello all
Wanted to update you as we are pretty much on every 3 week , infusion schedules and that in itself have reduced Joshua’s aches and occasional headaches. We’ve just had (the first week of August) a Mri so our fears of brain mets have been put to rest for now.
I believe we’ve been pretty much more on the 3 week schedule than on the 2 week schedule , this whole year .

Not sure of mg of IV solution that Opdivo is being infused ?
Josh still at 138 ish pounds . : )