Joshua on Opdivo-compassionate use

[Bonni Hess]

Thank you for the additional information Olga. I do remember several posts from MD Anderson patient Rachel with what had seemed like very encouraging news about the successes of PD-L1 treatment for her and a couple of other Canadian ASPS patients who were being treated with PD-L1 Immunotherapy drugs. I have often wondered what their statuses were since Rachel became inactive on our Board after April 2016,. My heart breaks to know that some of the patients developed resistance to the drugs, and some tragically lost their battles. I wish that there was more information available so we could know what the situation was regarding their failed treatments that had initially offered so much Hope. With deepest gratitude for your helpful sharing and with special caring thoughts and continued Hope, BonniI'

[D.ap]

Hello all,

We had our appointment to review our CT scans lung and pelvic as well as brain MRI , . We are incredibly happy to report that all lung tumors are continuing to shrink and smaller ones disappearing, as well as the good news of the liver tumors beung stable if not experiencing slight shrinkage from the January's scan .

No new brain tumors are appearing and only the ablated tumor is being mentioned as the treated metastatis .

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

Our lung tumors are 2.3cm down from 2.8cm, 1.4cm, down from 1.8cm .

The report says" continued improvement in multifocal lower lung field bilateral pulmonary modules when compared to 1/24/17.
Nodules are decreasing in size.
No new metastic disease is seen."
Pelvic report -

"Stable ct abdomen when compared to 1/24/17. Several metastic liver masses are unchanged or possibly slightly smaller. Left adrenal mass is unchanged or slightly smaller.
NO NEW METASTIC DISEASE IS SEEN IN THE ABDOMEN OR PELVIS.NO ACUTE ABNORMALITY IS SEEN."


And last but not least

"The dominant nodules within each lung have shown interval decrease in size from January . Dominant posterior peripheral right lung pleura based mass on axial image 51 measures 2.3 maximum diameter and previously measured 2.8cm. Medial aspect right middle lobe pleura nodule an axial image 48 measures 1.4cm diameter and previously measured 1.8cm.
Multiple additional right lung less than 15mm nodules are seen and have decreased in size and interval some of the smaller modules may have partically resolved


We had our 19 infusion as of yesterday and had 4 month and 9 month scans to date.

Our next scan is scheduled in 3 months .

Thank you all for prayers and your wonderful friendship and concerns .
Much love
Debbie

[Bonni Hess]

Dear Debbie,
I am doing the happy dance and sharing the great joy and strengthened Hope of dear Josh's VERY good and encouraging scan results . Please know how VERY happy I am for Josh and all of your family, and how deeply grateful I am for your faithful and invaluable sharing of Josh's Opdivo treatment experience and results thus far, and for all of your continued shared researched news and articles on this Board as well as your strengthening support and encouragement for all of our ASPS Community members. Take care dear friend and CELEBRATE!!
Celebrating along with you and reaching out to share happy hugs, happy thoughts, wishes for Josh's continued healing, lots of love, and continued Hope,
Bonni

[Bonni Hess]

P.S. Hello again Debbie, Is Josh continuing to gain weight, what side effects is he experiencing from the Opdivo, and how is he feeling? With happy hugs, special caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

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]

Common side effects of Opdivo include:
fatigue,
rash,
itching,
cough,
upper respiratory tract infection,
swelling of the extremities,
shortness of breath,
muscle pain,
More items...

http://www.rxlist.com/script/main/mobil ... monopage=0

[Bonni Hess]

As always, thank you for your prompt response and additional shared information dear Debbie. Reading through all of the many possible negative side effects of Opdivo, I am grateful that Josh is only experiencing a few of the side effects and that he seems to be tolerating the drug very well while having a very successful response to it.
With special gratitude, caring thoughts, healing wishes, love, and continued Hope,
Bonni

[ntran727]

Hi Debbie,

I was just reading the whole thread on Josh's experience with Opdivo because I didn't see it before in this separate thread. I just have to say, WOW! I can't believe how much difference it made and how much his tumors have shrunk since the start of the medication. I am so happy for Josh that the medication is continuing to work on him and hope that it will eventually shrink all of his tumors! Much love to you and your family

[D.ap]

Hi Debbie,

I was just reading the whole thread on Josh's experience with Opdivo because I didn't see it before in this separate thread. I just have to say, WOW! I can't believe how much difference it made and how much his tumors have shrunk since the start of the medication. I am so happy for Josh that the medication is continuing to work on him and hope that it will eventually shrink all of his tumors! Much love to you and your family

Nhi

I know WOW !
Joshua's wife and I were talking about the possibility of there being a day that the scans show nothingness.
However for now we are so thankful for reduction verses stable and certainly thankful for NO new mets and or progression!

Love to you as well

[D.ap]

Hello all
We've reviewed our scans 4th? set of scans since beginning opdivo today and we are happy to be told that Josh after large incriminate decreases over the short period of the year times, has somewhat plateaued and is experiencing stability to slight shrinkage (ie lungs) , compared to Aprils previous scans.
I'm trying to devise and present a year to date from the CT and MRI scans to let you all know what I know.

However stability is always welcome in our house as it should be with all.

With our use of Opdivo we have come a l o n g ways with the reduction of a bulk of tumor load in the lower pelvic area PLUS bone tumor in the cranium area PLUS added the physical muscle rebuild of Joshua.

98 to 125L:bs and the bonus energy plus hope. That's big news.

Our love to Jussi and family , as he makes his next challenge with a jaw met..

Love to all that are in this fight . Never give up...

Love

The Pearsons

[D.ap]

CT chest with contrast 7/10/17

Findings:
Lungs and airways : Multiple scattered bilateral pulmonary nodules are again identified. These are generally stable or smaller when compared to prior exam from April 2017. A representative dominant nodule in the peripheral aspect of the right lower lobe posteriorly measures 2.1cm on image 50 compared to 2.4cm on prior study. A representative module within the left upper lung lobe on image 35 measures 1.4cm in maximum dimension compared to 1.4cm on prior study.

Pleura : Stable. No effusions or pneumothorax There is a stable pleura- based nodular density in the left lung medically just posterior to the aorta On axial image 31 and measures 1.8cm. On the examination this lesion measured 2cm.

[D.ap]

Not knocking but sure not giving this radiologist a good report

[D.ap]

Our oncologist is looking closer at the chest report

[Olga]

Sounds very good in general! But I agree - it is pretty funny - "1.4cm in maximum dimension compared to 1.4cm on prior study."

[D.ap]

And same radiologist reported liver stable and other liver/lower abdomen stable