Jolie's mother from California - Dx Oct 2013

[Bonni Hess]

Dear Jolie, Thank you for sharing this VERY good and encouraging news and the great Hope that it brings for everyone fighting this extremely challenging disease. Please give your dear mom and yourself happy hugs from me, savor and celebrate the great relief and joy of there being no new tumors and the complete disappearance of some existing mets, and know that my very best wishes, most positive thoughts, and greatest Hope are with your mom, you, and your family for more good scan results in 3 months which will Hopefully show continued disease stability and more tumor disappearance. Is your mom being followed with complete scans including chest/abdominal/pelvic CT's, brain MRI, and full body bone scan, or are they only following the mets in the areas where they were present when she started theTrial as is the usual practice with Clinical Trials? I Hope that your dear mom tolerates the PD-1Trial treatment well with minimal side effects and that you are all able to share a relaxing and beautiful rest of the summer . Take care Jolie and keep in touch with the Board as you are able. Sharing your great joy with special caring thoughts, healing wishes, much love, and continued Hope, Bonni

[Jorge]

Jolie,
I'm so happy for your mother and you! Look forward to greater news in 3 months

[Vega343]

Jolie,
Just got through your story since 2013, wow. I am so impressed with your level of understand and pushing the doctors to do what is needed for asps! And you moved cross country to be closer to your mom and focus on this for her, you are an amazing person!
How old are you? So intelligent and able to deal with the devastation this brings and also make proactive good decisions, serious way to go.
I do hope the great preliminary results from this trial keep coming for your mom and your family, so very much! What a journey. I am sorry you all had to experience the miss by the doctors on the scans last year, been there too and there are no words to describe the anger and frustration.
Keep going, your mother has a great support with you and your ability to reach out and drive for right treatment. Will hope for a positive update from you soon.

[Olga]

Jolie, hi, I just wanted to check with you and ask if you are able to update us on how the Pfizer PF-06801591 trial is going,
thanks,
Olga.

[JolieS]

My mom continues to see tumors shrink & remain stable on the trial! Her doc is very encouraged and said she is having the best reaction of his patients on the trial.

Target lung lesions:
Lesion 1:
September 2016: 14 x15 mm
Feb 2017: 4x3 mm

Lesion 2:
September 2016: 16 x 14 mm
Feb 2017: 6x4 mm

The bone mets in her sacrum and spine remain stable.
Very encouraging news

Also my mom has overall been feeling very good. Compared to votrient and the nasty afinitor the side effects are nothing. Her cough is pretty much gone. She has fatigue and occasionally some swelling in joints (painful finger swelling, for a few days her tongue was enlarged). But nothing too bad at all.

[arojussi]

Thanks for update. Glad to hear things are going well.

[D.ap]

Morning Jolie
The news is awesome !
The reduction is after 7 months?
Josh is doing well with his Opdivo results and as Olga said earlier on your post, let's hope the pharmacist and doctors get this targeted therapy right

How's your moms rib and hip feeling ?
Are you all aware of what arm you're in and how often with scans of CT and MRIs?
Love
Debbie

[Bonni Hess]

Dear Jolie, This is WONDERFUL!! news and truly reason for great celebration and strengthened Hope Is the Pfizer Trial that your dear mother is participating in testing a PDL-1 targeted immune checkpoint inhibitor, what phase trial is it, and do you know the name of the drug being tested? We are VERY thankfully seeing some incredible treatment responses to some of the promising new immune checkpoint inhibitor drugs such as Opdivo and Keytruda by patients on this Board, and it is certainly a time of exciting research and treatment advances for this extremely rare disease for which there have traditionally been very few and very limited treatment options. Hopefully your mother's next scans will also show shrinkage of her bone mets in her sacrum and her spine, but for now it is wonderful that the bone mets are at least stable, especially if they are not causing her any pain or discomfort. How often are her scans being done, and is she receiving chest/andominal/pelvic scans as well as a brain MRI and a full body bone scan? Thank you again for your thoughtful shared information and for this VERY good news update. Sharing your and your dear mother's great joy and strengthened Hope with happy hugs, celebratory High 5's, best wishes for continued tumor shrinkage/disappearance, love, and continued Hope, Bonni

[D.ap]

Jolie

This is your clinical trial, right,

https://clinicaltrials.gov/ct2/show/NCT02573259
Debbie

[jenhy168]

Hey Jolie,
So happy to hear the good news that the trial is working well.
love, jen

[JolieS]

Hi All,

It's been a while since I logged into this forum. Just been trying to pretend the disease doesn't exist I guess. My mom has also been in good health so we've been enjoying that. She had to go off the clinical trial about a year ago, and we were just monitoring with scans every 3 months. She was experiencing lots of painful neuropathy and pancreatitis from the immunotherapy.

Back in April a mass showed up again in her upper right lung and started blocking the airway, the same spot where she had SBRT radiation 3ish years ago. She had a Bronchoscopy in August to clear the airway. No complications, but it grew back in 3 months. On Nov 30th she had the same Bronchoscopy done again to clear the airway but she suffered a complication during the procedure where her blood pressure dropped to 40 and her blood work showed elevated Troponin levels. They did an echo and stress test which came back normal / inconclusive. They were unable to do a CTA because they couldn't' get her heart rate to slowdown. Anyway... no clear answer on what happened there but her troponin levels are normal / not showing in blood work anymore. She must have had a minor heart attack under anesthesia?

Now she's back in the hospital after experiencing excruciating pain in her back, side and front all on the right where the tumor is and where the bronchoscopy was performed. The doctors think it's an abscess infection from anaerobes (average mouth bacteria, thankfully no super bugs). She's been admitted to the hospital on IV antibiotics and pain medicine since Friday 12/7, and not showing improvement. Lots of pain when the meds wear off and fevers coming and going. On top of that, she doesn't seem to be getting much sleep... she has been talking/singing/groaning/moaning in her sleep which is bizarre and she sometimes wakes herself up. I think she must not be getting real rest. Could this be from the pain medication? Also, is it normal to have such bad pain from an infection in the lung? No one is giving us clear answers and it's very scary.

She was meant to start Keytruda today and SBRT radiation in 1 week, but that's all on hold now until this clears up. I'm afraid the tumor will just grow back again? Any advice would be super appreciated.

[JolieS]

Also - just to clarify, the clinical trial was extremely effective for my mom. It completely evaporated the numerous, "countless" mets in her lungs except for this one large mass that shrunk and just remained stable for a long time. We thought it was just dead tissues and scarring from the radiation, but it has since grown back since stopping the immunotherapy. The met in her ischium completely disappeared and new bone grew in its place, which is amazing. The few other bone mets to her sacrum, pelvis, spine and ribs all shrunk and stabilized. Still no growth on those.

[D.ap]

Hi Jolie
Dang it I’m so sorry for the recent happenings. :(
Have you guys had full scans , brain lung and lower pelvic ?
Bacterial infections can be a challenge ..
Have they identified the actual bacteria they are fighting ?

[JolieS]

Hi Debbie,

They tested her sputum and said it's only showing anaerobe bacteria. So it must be that. She had a PET scan in August, and recent brain and pelvis scans within last 6 months. She's not sure when exactly and I don't have the records.

[jcs2007]

I’m so sorry to hear of her recent set back. My son had a tumor in his lung that caused a problem which bronchiscopy didn’t help so he had a pulmonary embolization procedure. He then started the axi/Pembro trial which helped shrink the mets. Hoping you get some answers regarding the infection so you can move on.