Joshua on Keytruda /axitinib off label

[D.ap]

Because of liver tumors increases , while on Opdivo
Joshua has begun on Keytruda plus axitinib ( Inlyta)

[D.ap]

So CT Chest W/contrast
Comparison October 31,2016 to January 24,2017

Lungs and airways : innumerable bilateral pulmonary nodules noted. There is been significant improvement in size of lesions compared with previous study . Multiple lesicions are resolved. Left upper lobe pulmonary nodule on image #23 measures 0.8cm previously 2cm. One of the left lower lobe pulmonary masses measures 1.9cm previously 5.4cm. A dominant right lower lobe mass measures 2.7cm previously 6.3cm. There is stable scarring in both lower lobes
Pleura: unremarkable . No effusions or pneumothorax
Vessels : unremarkable
Heart: normal size. No pericardial effusion
Lymph Nodes: no significant hilar, mediastinal or aillary lymphadenopathy .
Bones and chest wall: unremarkable .

Wanted to remind you all how very very far we’ve come in our journey , from 2016–

June 24, 2019 compared to April 12, 2019

Chest ct and abdomen and pelvis study-
1. Heart remains normal size
2. Mediastinum and pulmonary hula: no adenopathy
3. Lungs and pleura: No significant change in several scattered pulmonary modules . Reference module in right lower lobe again measures 0.6cm. A left lower lobe nodule measures 0.6cm and is unchanged . Partially calcified right lower lobe nodule inferiority is unchanged .
NO NEW NODULES ARE SEEN. Extensive pleural scarring in the lung bases is again noted. No pleural effusion.

Abdomen and pelvis findings :
1. Liver and spleen: Hepatic metastases are again noted. The largest lesion now (the bland (embolized ) measures 4.8cm x3.5cm compared to 5.5 x3.5 cm previously . The segment 4 lesion is minimally decreased in size 3.7 x 2.1cm compared previously to 3.9 x 2.6cm. No new low density lesions are seen. A tiny segment 8 low density lesion is unchanged and may represent a small cyst on image 90 series 2. Spleen unremarkable
2. Adrenal glands and kidneys : unremarkable
3.Pancreas and retroperiotineum : pancreases unremarkable .

Impression
Chest
1. Stable scattered pulmonary metastases . No new pulmonary nodules.
2. No thoracic adenopathy.

Abdomen and pelvis
1. Decrease in size of hepatic metastases. No new hepatic metastases.
2. No abdominal or pelvic adenopathy.

[D.ap]

We have just begun Keytruda this week and have been on axitinib for about a month ..

We also had an “bland” liver embolization on April 12 and
On our 6/24 CT scans have seen a 7mm reduction on that treated tumor .
Our worry was trying to add yervoy to the Opdivo could bring on worse side affects than simply moving to a sister drug that has been clinically studied on ASPS.


We are truly thankful for the Opdivo opportunity and how it’s played a vital role in us having Josh with us today . Alive.

[D.ap]

We’ve had our scans , MRI and lung and pelvic performed last Tuesday , and have our sched infusion / scan consult September 17.
Will update soon.

Hope all is well with all.

Love ,

[D.ap]

As I said before, our liver is the focus at this time and we received our pelvic scans reports yesterday and were presented with a 1 cm increase on the bland embolized segment 5 lesion.

In June 2019 it was 4.8x3.5cm and is measuring 5.8 x4.8 in alittle over 2 1/2 months.
Another grew to 3.7x2.1 to 4.0x2.5 . So this is the 10 week scan from the beginning of keytruda but the 14week scan from the first dose of axitinib.

Axitinib began May ? 2019.
Keytruda began June ? 2019.

Clinically Josh is better as his headaches are less frequent and weight is staying on, as well as his BW values with his liver are in the normal ranges.
Thyroid within range.
With everything looking clinically ok, we are hoping for a pseudo reduction to be the results of the November scan and are continuing on the combination till clinically things tell us differently.

We are scheduling scan at 20 weeks, around November 24ish and our oncologist is contacting the intervention radiologist and a couple others with knowledge of this combo to -

A) ask what they've witnessed and or read on embolisms and the tki /immune combination, with the liver.( performed 4/22/19)
B) inquire on our behalf about the possibility of cyroablation to the largest liver tumor.

Of course if there is the rapid progression "appearing' with that scan in November, we will be discontinuing the combination and our oncologist of course has begun to research our possibilities, if need be>

Mikko and Jussi were kind enough to share this link back in 2016 when we had just began our opdivo after large amounts of lower pelvic disseminated happened.

https://www.cureasps.org/forum/viewtopi ... 1297#p9939

https://www.curetoday.com/articles/immu ... dscape?p=1

We only hope that the tumors our being destroyed rather than growing.

Will write more later
Love,

[D.ap]

We also had a worsening of the medial left lower lobe suspicious of pneumonitis or pneumonia with a notion of right lower lobe nodule measuring 6mm and calicified right lower lobe nodulw inferiorly is unchanged.. Also parenchymal scarrin in lung bases is noted.
Joshua's O2 sats "are better than mine" says his oncologist. : )

[D.ap]

I was looking at Joshua's personal post and this is where we began with the liver tumors back in 2016, I believe

viewtopic.php?f=4&t=750&start=165#p9775

[Olga]

Pneumonia night be an adverse effect from Keytruda, be very careful with that.
Did he have any PET scan recently? some drs suggest the changing values can help say pseudo from real progression.
Also does Josh have any small conveniently located met for the possible SBRT treatment to try to trigger abscopal effect? Not close to the skin or something that should be avoided

[D.ap]

Hello Olga
So no adverse affects other than the 2 liver tumors and lower left lung existing 6mm possible inflamed issue..


To my knowledge ..
But I will pass onto the powers that be , the info .:)
Thank you !

[Olga]

But you said - medial left lower lobe suspicious of pneumonitis.

[D.ap]

But you said - medial left lower lobe suspicious of pneumonitis.

Yes they did.: )

I wonder the risks verses the benefits?
It is an active tumor and in my unprofessional opinion , could be an easy treatment?

I've passed the word.
Thank you Olga

[Olga]

Josh has to advise the drs that the pneumonia or what it looks like pneumonia might be an immune attack to a lung met. In general this situation is very alarming as it may resolve on itself but may progress and escalate rather rapidly - autoimmune or not it is the same serious situation. He has to watch for the signs of worsening - shortness of breath, temperature, cough with the blood sputum. The check up X-Rays should be done to rule out the pneumonia worsening. His wife has to be aware of the signs of worsening and should check up on him. Since his oxygen saturation level stays very good (Dr.Rolle rocks), right now it might be not that bad and we can hope it is just a haze on the scans caused by the inflammatory response around the mets.

[D.ap]

Olga
I agree and have already talked of fever etc. with Josh .
He is having some clearing of the throat type symptoms and Wednesday his lungs sounded good.
But all good points that you've made! : )
And yes Dr. Rolle does rock!!

[D.ap]

Hello all
I haven’t posted since last year and we’ve continued on Keytruda and axitinib , on 3 week schedules since then.
In November we redid the embolization and will be doing a MRI this week to see the vascular results , to the liver .

Our ct scan in October showed improvement with our left lung inflammation, however our January CT chest reported inflammation increase once again .
The radiologist reported pneumonia .

We were presented with several option , to address this increase and have chosen to perform a needle biopsy to see what the heck is going on, with this happening.

Prior ct scans showed 3 small images that have been stable for years , near the trachea and a lymph node.
All else is stable and or is the case with the brain , no changes and or appearance of images .
Will keep you posted .

[Bonni Hess]

Thank you for your thoughtful update dear Debbie. I am so sorry about dear Josh's chest inflammation and pneumonia and Hope that you will get some benign easily treated and resolveable answers. I am personally not an advocate of needle biopsies because of concerns about spreading tumor cells into the blood stream, but Hopefully there are no active tumor cells remaining that could be spread. My very best wishes and most positive thoughts will be with you for very good news from Josh's upcoming liver MRI which will Hopefully show successful results of tumor shrinkage/disappearance from the November liver embolization. I am so grateful that he seems to be having a successful response to his combination Keytruda/Axitinib treatment with disease stability and no new brain or other tumors. I will be anxiously awaiting your next update as I continue to hold dear Josh, you, and your family very close in my heart and my most caring thoughts with continued Hope, Bonni