Jolie's mother from California - Dx Oct 2013

[Olga]

I would definitely consult cryo doc directly before proceeding with the SBRT to lungs. It damages the lung tissue on its way to the target met and scatters around - damages other structures. It is very good that you have optimistic SBRT doc and this option is very valuable in lieu of other ones, but he is not the right person to consult re. cryoablation. Half of Ivan's cryoablations were done in the central location setting, with the success, but it depends on the experience and skills of the doctor. We had people with post SBRT lung fibrosis problems here, when the lung tissue get scarred and does not work well anymore. Some people does not get this problem, it is a very patient specific and can not be predicted in advance. Is UCLA in your mother insurance network or not? Dr.Suh - a cryo doc from there - can be consulted directly, self referral.

[JolieS]

I will ask her onc to send her scans to dr. Suh and refer us. I guess if insurance doesn't approve the referral we can see how much a consult would be out of pocket. UCLA is out of my mom's network.

American health insurance is incredibly corrupted. It's actually sickening.

Anyway looks like we will be scheduling her hip replacement surgery for this week or next, followed by SBRT to the hip area and lung (unless of course we end up going with cryo to the lung). I believe the radiology oncologist is submitting this treatment to her insurance tomorrow so we're keeping positive that they will approve.

[D.ap]

Hi Jolie
Out of network =
http://healthinsurance.about.com/od/glo ... etwork.htm
Find out what your insurance will pay with your in network insurance and see if Dr Suh will accept the amount
ASPS is very rare as you know so there are very few state side experts. Insurance needs to acknowledge that with a denial letter

[D.ap]

Your moms health insurance is managed by a HMO?
With the rarity of ASPS and with the understanding that it Is a indolent sarcoma the patient should be considered at all stages for curative care .
If not , then her lungs need to be treated at the very least with great care as we all are here for the long term and must think in those terms from this day forward.

What are the Differences Between HMOs and PPOs?


http://healthinsurance.about.com/od/und ... s_PPOs.htm

Also Olga's posting

Effect on survival of local ablative treatment of metastases from sarcomas: a study of the French sarcoma group

http://www.cureasps.org/forum/viewtopic.php?f=26&t=963

[JolieS]

Hi all,

My mom had an anterior hip replacement last wednesday, 3/9. She's at home now recovering, in a good amount of pain but getting better each day. The doctor replaced the hip joint and scraped out as much tumor from the acetabulum as possible. In 2-3 weeks she will have SBRT radiation to the remaining tumors in her hip area as well as the large met in the lung.

We found out from her bone scan that her 11th rib is fractured. She has been feeling discomfort there, but because of the pain meds she was taking due to the extreme hip pain it wasn't super noticeable. The bone scan did not say there was a met there, just that it is fractured. We need to consult with her oncologist on necessary scans to see what's going on there, if there is another tumor we'd like to see if we can have it zapped via SBRT at the same time as the other locations.

We also FINALLY got insurance approval of Afinitor. She will start this in 2-3 weeks after she heals from surgery. I had started a fund raising and awareness campaign on social media to try and pressure the insurance company/pharma company/ raise funds to pay out of pocket for the drug. I can't say for sure if it influenced the insurance company's decision but it may very well have...

I'm not working at the moment so fortunately I'm able to care for my mom during her recovery. It's so hard to see her go through this and in so much pain, I hope she can get back to her normal radiant self soon. I love her so much.

Also, we never pursued cryro treatment as our oncologist strongly advised us not to. It is much more invasive than SBRT, so ultimately I stopped asking about it.

A few weeks ago we got as second opinion from another sarcoma specialist here in LA, Dr. Chawla re: systematic treatment. They run a Cediranib/ Sunitinib trial and despite her previous Votrient use are going to try and enroll her. He also thought Afinitor may be a good option and encouraged us to pursue it, so I guess we'll try that first.

[JolieS]

Her doc just emailed saying we should have the rib x-rayed to see more of the fractured rib and determine cause. Does this sound right? If the cause is in soft tissue and not the bone itself would that show up? She had the full bone scan and a chest CT (fracture showed up on the bone scan, not mentioned in the chest CT notes). Appreciate the advice!

[Olga]

It is ok to have an X-ray as its dose is fairly low. They might want to get a different angle of view.

[jenhy168]

Olga,

Although a different view angle x ray may shed some light, aren't x rays generally not that detailed enough to show a small met?

And are bone scans only just top down view?

Would a pet scan help?

[Olga]

Usually PET is used to find a new met/tumor but other scans or a biopsy are used to verify it. It would add some info if the met is bigger than 20 mm as smaller ASPS tumors are metabolically low active and it is already known that it could not lit up on the PET scan. What they probably want to see is if the rib fracture could clearly show up on the plain X-ray to rule out the bone met. MRI is the most sensitive specific scan for the bone and soft tissue mets but as the lungs are moving the pictures loose quality.

[JolieS]

Thanks for the info.

Her oncologists looked at the scans and said it is actually a met to the 11th rib. Her radonc is evaluating if he can treat it at the same time as her hip area and lung. We begin radiation next week. He also said that the met in her lung has grown to 7cm and it would be too risky to treat with SBRT at that size and location so he will proceed with IMRT. I think this is a good option, as long as it kills it. It will be either 10 or 15 treatments. His office is over an hour drive each way so that's going to be a bit of a drag, but worth it!

She's recovering well from surgery, getting better each day. She started Afinitor this week so we're just trying to see how her body reacts to it and manage that.

[JolieS]

So Afinitor didn't work

My mom has a new tumor in her sacrum and more growth in her lungs. The areas targeted with radiation (lung, rib and right hip area) are all stable. We've decided to try an immunotherapy PD-1 inhibitor clinical trial at UCLA: Pfizer's PF-06801591: https://clinicaltrials.gov/ct2/show/NCT02573259

Very hopeful this will work!!!! It's gotta. Because she's enrolling in the trial she cannot seek radiation treatment for the new sacrum tumor.

She has been very tired, sleeping a lot and still experiencing pain. Not clear if the pain is from the hip surgery still or the new sacrum tumor She also has developed an intermittent cough which appears to be triggered by moving positions (i.e. standing up after a long sleep).

[jenhy168]

Your mom is a true fighter. I'm hopeful the pd1 trial will work for her! Is she starting next week? Did she go see dr chawla to ask about the other trials..?

Maybe an inhaler can help with her cough..may help dilate the airways a little. Dr C prescribed me one before..
It's possible that her cough can get better. My coughing fits were so bad before for over 6 mos, but it's a little better now. I used to not be able to sleep on my side, but now I can.

Love, jen

[Olga]

Hi Jolie, thank you for an update. The Pfizer's PF-06801591 clinical trial looks interesting as we already see the activity for other Immune checkpoint inhibitor drugs in ASPS, I hope they keep improving till they get ultimately effective!
Re. cough - may be one of the lung mets irritating the trachea - if it is very close to it. Or may be she needs to get up few times a night.
Re. leaving the sacrum met untreated - is it a trial requirement to have one measurable met? Doesn't she have some other lung mets?

[JolieS]

We got the results back from my mom's first scans on the trial. Good news! No new tumors, the smaller tumors in her lungs have DISAPPEARED! The larger nodules in her lungs and bones got bigger, but that may be because her T cells are invading and battling the bad cancer cells. Her onc is encouraged, but not quick to say "it's working". We'll know more in 3months after next scans. We're so happy to see no new tumors and that some nodules have just vanished, super encouraging.

[D.ap]

Hi Jolie

That is great news of disappearance of tumors !
So your mom has been on the trial since when ?
Thanks for including us in the wonderful news and here's to reduction in 3 months of the lung and sacrum tumors !

What dose is your mom on currently?
Love
Debbie