Jolie's mother from California - Dx Oct 2013

[Olga]

Some sleep disturbances could be indeed from the pain medication.
I am very sad to hear that the single spot progression causes her so much pain and problems, it could have been treated by the local cryoablation or even by the VATS microsurgery and the problem would be gone by now. Is the surgery an option to remove it? SBRT isn't a bad option either but might damage the surrounding tissue to much. Dr.Suh is a good cryoablation doctor in CA.
She should respond to antibiotics before the day 7 if they are effective and the right type.

[arojussi]

Sorry to hear. Necrotic tissue from immunotherapy sounds like the perfect breeding ground for bacteria, that could cause cronic lung infection. In theory if I am being overly optimistic this can look like disease progression. Unfortunately it is also possible, that disease wasnt completely dead and as immunotherapy was stopped this lung met started growing again. Reason why I even dare to say something like this is because resistance to imunotherapy has happened so rarely in asps and something that looks like tumor in the scan is relatively common finding. If it is indeed asps progression re-starting immunotherapy has realistic change of working. Naturally first step is to get infection under control.

Yes pain medicines can cause insomina and mental changes.

[arojussi]

One more thing pro-bnp just measures how much cardiac muscle is stretched. Tachycardia will definitely cause that to rise. TnT can detect or elimiate heart attack as a possibility. I am deeply sorry if I have made mistakes here as I am not a doctor.

[JolieS]

Olga - we asked about cyroblation but three doctors( albeit not cyroblation specialists) said this spot is not a good place for that therapy. I’m not sure about surgery to remove it... they’d have to remove her whole upper lobe I think? Also very concerned about any general anesthesia after the latest procedure and her BP dropping and heart distress. Still not sure what happened there or why her heart rate is still high.

The plan is to start keytruda and SBRT radiation to the spot. It’s all on hold until infection clears, which they say can take 6 weeks.... she can’t be in hospital that long though, can she!?!

@arojussi - We are almost certain the tumor has started to grow back. It was removed from airway 3 months ago and grew back in same place. However it is very possible that there is also a lot of dead tissue there as well. Now that the airway is clear an infection that may have been lingering there, trapped sort of, is now free to drain and move around... causing her pain? That’s my theory and itsort of lines up with what some doctors are saying. What is TNT in regards to her heart? I believe they gave her too much anesthesia during procedure causing BP to drop and stressing her heart. Also, she has a left branch bundle block which was discovered about a year and half ago. No clear cause... happened while on trial and showed up on the EKG. From my understanding this wouldn’t cause the complications she experienced during procedure though.

Also we discovered that the hospital hasn’t been giving her the thyroid medication she has been on for many years! This was an oversight, ugh. Perhaps this cold turkey stop has contributed to her fatigue and sleep delirium.

[arojussi]

Troponin can be released from damaged heart or recular muscle tissue. It is my underestanding, that TnT is spesific to heart. At least it is what they used to detect, that my heart tumor hasnt caused measurable heart cell damage. Having thyroxin levels stable is indeed important for body and. Mind.

[arojussi]

TnT usually stays elevated few days after heart attack. So troponin spesific to heart mucle can indeed rule out even small heart attack during anesthesia if TnT is not elevated. Was this lesion removed completely during thoracoscopy? If it was and it grew back. We could quess if it is cancer growth or infection based on how fast it has grown. My best estimate would be that asps can grow max 2-3 cm in 3 moths. If lesion was completely removed and it grew bigger, then asps doesnt fit. Infection and inflammation can grow quicker. Once again I know how difficult time this is and I am sorry if I am just adding confusion, but just one lesion growing doesnt fit to didease progression in my mind.

[D.ap]

Morning Jolie
How’s your mom doing ?
I agree with Jussi that infection of necrotic tissue is probably what’s going on.. as they are calling it an abscess .
Remind us how long this has been going on from the time of bronchoscopy procedure to current ?
It sounds like the infection not being a resistant infection is good news however the time this whole infection thing has been going on isn’t ?

Are they seeing bloodwork numbers to help determine if the antiobotics are helping ?
That appears to be a challeng to get antibiotics delivered to lung infections as a result of the vascular /inflammatory nature of abscesses.

Knowing the location and how easy it would be to surgically remove it once your mom is more stable with heart issues and infection might be a good alternative to talk to the doctors about , IMHO. If and or when the time arrives . Although I’m not a doctor .

[Olga]

Loosing one upper lobe is not a big thing though, people need only 1/5 of the lung tissue to live the normal life without any deficit. Its an oversupply that we have in our bodies - the same as the liver tissue, you can loose like 2/3 of it without any shortage to maintain the life function.
Lung resection for the septic indications are frequently done. Try to discuss the surgeries with the surgeon and cryoablations with the interventional radiologist directly, picking the best ones so they do not base their recommendations on an insufficient experience. Even paying for the cryoablation out of pocket is not that extremely high - seeking the help from best cryo docs like Dr.Littrup or Dr.Aoun would be my best choice but starting from the consultation with Dr.Suh and letting him know that you can access Dr.Littrup if the situation is technically very complicated. He has done numerous central location cryos. Involvement of the bronchial branches is a complicating factor for sure this is why I suggested to consult the thoracic surgeon as may be it is better to remove this damaged area instead of trying to repair it via more radiosurgery.

[arojussi]

Removing entire lobe from lungs is indeed medically possible. I would be worried about general anesthesia, because of heart rate being elevated. Of course pneumonia itself can cause tachycardia. Skilled doctor can most likely do cryoablation with just local anesthesia making operation easier for the heart. Of course diffucult location can make things more complicated.

[D.ap]

Jolie and Chrisann

Hope you are getting answers .
As Jussi has stated , if pneumonia is the issue then prehaps if antibiotics allieveate the issue of elevated heart rates ( by eliminating the pneumonia ) then moving forward with either ablation and or surgery are in order .

Love and prayers ,

[JolieS]

Hi guys, thanks for the advice. My mom finally got to go home from the hospital after one full week admitted. She’s on a 4 week regiment of two antibiotics to treat the abscess / post obstructive pneumonia and extended release morphine + lidocaine patches for pain. She also had to go home with oxygen because her lung capacity is so low with this infection + tumor build up.

I spoke with her UCLA pulmonologist and he thinks surgery to remove it would be extremely difficult because the lung tissue is “like mush” due to the infection and necrotic tissue.

I also got confirmation that her pain is from the infection and or possibly the tumor extending into the lining of the lung. Apparently that’s where all of your lung nerves are :(

I think that once the infection clears we will proceed with the SBRT radiation + Keytruda.

[Olga]

Jolie, thank you for an update, I was thinking of your mom. Ask for the consultation with the best thoracic surgeon that they have at the UCLA. Ivan's great surgeon from Germany, Dr.Rolle, had decades of experience in a septic surgery field and as I understand, it is a very difficult surgery that could be only done by the experienced in a given field thoracic surgeon. I would just consulted the best one to have a back up plan in case her conditions does not improve, asking to review her case re. if it is possible to remove a single lobe. It takes time to go trough the referral and a review, that way you are ahead of the game if needed - the surgeon is familiar with the case and noted in her file. With Ivan we always overconsult and have few back up plans. I am assuming the pulmonologist is a very experienced in his field, but always consult the specialist directly, i.e. do not rely on the oncologist to estimate what interventional radiologist could do and on the pulmonologist on what thoracic surgeon could do. They work as a team but sometimes you get a very surprising result.

[D.ap]

Hello Jolie and Chrisann ,

So incredibly glad the news of going home !

Chrisann ,I hope the oxygen is helping and that a plan is in order to get you off it.

Do you all know of the time line / goals to get infection under control then move to from possible treatment of infection to tumor treatment ?

I so agree with Olga to get a surgeons input as it can be a real possiblity when infection / progression ? can’t be eliminated completely internally / lung wise .

Infection is absoulutely the most important focus.
Once the clear is given , then the necrotic / possible active tumor needs to be addressed .

The pathology has shown active ASPS progression ?

You guys have been through so much .

My heart goes out to you .

Love

[D.ap]

Jolie and Chrisann
Hope today finds you all doing well.
Thinking of you . : )

Love the icureasps folks
Including
Me

[JolieS]

Hi friends,

Sorry I haven't been on here lately. My mom recovered from the lung abscess in January and started Keytruda. She received 3 rounds of it but her neuropathy came back so they discontinued it. Unfortunately last Wednesday my mom was rushed to the ER for what ended up being a brain bleed caused by a brain tumor. She hasn't had a brain MRI for the past 2 years despite my urgent requests. Her insurance forced her to see a local in network oncologist who insisted a full body PET scan would be enough. 3 weeks ago she had a full body PET scan which did not show the walnut sized met in her brain. Absolutely heart breaking. She had surgery Thursday morning to successfully remove the bleed and the tumor. Unfortunately the bleed appears to have permanently damaged her right field of vision. The trauma also occurred near the communication part of the brain so she's having some trouble speaking, but that does appear to be improving.

I'm really scared and frustrated. I'm supposed to be starting my MBA program in 2 weeks and I don't know what to do.