Jolie's mother from California - Dx Oct 2013

[Olga]

Hi Jolie, thank you for an update.
re. genetic testing - some of our ASPS patients have done it and used the result for the treatment decisions, in some cases the treatment was active for awhile but nothing out of extraordinary. For the marker to be a valid target, it has to be a highly expressed one. What % was it? A mutation in the EGFR gene is not rare in sarcomas.
re. drugs you listed. Some of them were tried by our patients, I do not remember any particular success but I do remember a case of the fatal pulmonary toxicity with Iressa (Gefitinib) that caused pretty rapid lung function deterioration in that patient. This drug was in the beginning of testing then - few years ago - and the cases of the rare but significant pulmonary toxicity were unknown then.
You still need an insurance to approve the drugs that is unlikely, and there are some clinical trials going on that might be more appropriate to join, but these options have to be carefully reviewed and as I remember your mother highly trust to her oncologist so that is how it is going to be done, I trust.
I hope it is going to be found that Votrient is working for her.

[D.ap]

Hi Jolie

It's good to hear from you
I am glad your mom is weathering the Pazonib well.
At last post you mentioned your mom had a tumor at 1.6 cm?
The lung tumors can be individually treated if need be but I believe as a rule the doctor wants a patient to be off Pazonib for a given time frame before ?

What mg of Pazo is your mom on and how often is blood work performed ?

Write when able

Much love
Debbie


Also Jolie and family, here is a link to the Libby Shriver Initiative, that is specific to ASPS
It talks of molecular markers targeting-

http://sarcomahelp.org/articles/targete ... rcoma.html

Also it covers ASPS from A to Z about .

> What is ASPS?

http://sarcomahelp.org/asps.html

The links topics

What is Sarcoma?


1. Encouraging Guidelines
2. The Sarcoma Universe
3. Sarcoma Centers
4. Sarcoma Treatment
5. Clinical Trials for Sarcoma

http://sarcomahelp.org/asps.html

[JolieS]

Hi all - hope everyone is doing well.

Just a quick update, my mom is still on Votrient. She's experiencing some unfortunate side effects still like upset stomach, fatigue and now a lot of joint pain. Her doctor suggested reducing her dose from the maximum (I think 800mg) down to try and help curb the side effects. The last scans showed stability - no new lung mets or growth.

I'm also moving from NYC to LA in 2 weeks. I got a job out there so now I can be closer to my mom and family, which I'm looking forward to. It's a really crazy time for me personally trying to figure out how to move my life across the country! I hope I've made the right choice.

[D.ap]

Hi Jolie

Good to hear from you.
It's also good to hear of your mom's side effects being tolerable?
At last count the biggest tumor in your moms lungs was 16mm? Is the stable report show what is currently the measure of the tumor?

Safe travels and well wishes for you move to California.

Love
Debbie

[jenhy168]

Hi Jolie,

Glad to hear that you're moving to Cali and that your mom's scans are stable.

Safe travels~
Jen

[JolieS]

Hi all -

It appears my mom has developed a resistance to Votrient after one year. Growth was detected in her lungs after comparing the recent scans to the scans from a year ago. Her doctor has recommended she try Everolimus/Rapamune next. Has anyone had any experience with these drugs?

He is also referring us to a radiologist for SBRT treatment to her her largest met, which measures 26x38mm. This met is actually in a lymph node in her lung, the report refers to it as "bulky right interlobar lymphadenopathy". Her second largest nodule measures 12mm and is in her left lower lobe.

Her insurance denied the referral to the UCLA radiologist and redirected her to the in-network radiology center at St. Mary's in Long Beach. After extensive google searching it doesn't appear that they offer SBRT. Does any one have any suggestions on how to successfully appeal this decision and get SBRT approved for the lung nodule? I remember reading this treatment is a tough one to get covered by health insurance.

Other than this unfortunate news, life at home in Cali has been great. Happy to be here with my family.

Hope everyone is doing well and is off to a good start to 2016.

-Jolie

[D.ap]

HI Jolie

I'm sorry to hear of the possible progression.
Was this based on the lymph node lesion measurements to date ?
What dimension was it last year?

Could the lesion be infection or worse yet a blood leakage?
I suspect there is coughing involved or no?
Love
Debbie

[Olga]

Jolie, hi,
as I understand there is a progression in more than one nodule but this one is the biggest one/needs to be addressed soon. The size is getting to big to keep it as it may overgrow the optimal size for the focal treatments. SBRT might have different names like CyberKnife, Novalis, LINAC radiosurgery etc. - depends on the technology used. The most important factor is the experience the radiologist has using it - less than 100 cases treated would be not sufficient. The insurance would not refer her to that facility if there was no radiosurgery available, right? But the question is if your mom wants to be treated there, and if there are other options avail. to destroy this met. We prefer the cryoablation versus the radiosurgery as it is less damaging for the surrounding tissue (lungs and other organs receive a scattered dose that we are trying to avoid). May be there is a good quality cryo doctor in her insurance network - they are called interventional radiologists. There is one at the UCLA (Dr.Suh) but it is out of network again. Do you have an access to the list of the places included? Is it only in CA? There are few excellent cryo drs - Detroit, Providence. We always pay out of pocket for the cryo as we are out of country.
Re. Everolimus - I do not remember anything positive on that front. There is a very hopeful development in PD-L1 drugs - some clinical trials going on, may be talk about them with the oncologist. Other TKI are also avail., like sunitinib - if someone responded to some TKI they usually respond to another one too.

[D.ap]

Forgot to tell how great that you are with your family.

HI Jolie

I'm sorry to hear of the possible progression.
Was this based on the lymph node lesion measurements to date ?
What dimension was it last year?

*Could the lesion be infection or worse yet a blood leakage?
I suspect there is coughing involved or no?
Love
Debbie

We had a radiologist tell us that pneumonia was progression. It happens


Also food for thought

Histoplasmosis--
http://radiopaedia.org/articles/differe ... ymph-nodes

Sorry as we need to look at all possibilities before treatments are administered .

[D.ap]

Olga,as always , is right on with treatment suggestions.

Jolie, hi,
as I understand there is a progression in more than one nodule but this one is the biggest one/needs to be addressed soon. The size is getting to big to keep it as it may overgrow the optimal size for the focal treatments. SBRT might have different names like CyberKnife, Novalis, LINAC radiosurgery etc. - depends on the technology used. The most important factor is the experience the radiologist has using it - less than 100 cases treated would be not sufficient. The insurance would not refer her to that facility if there was no radiosurgery available, right? But the question is if your mom wants to be treated there, and if there are other options avail. to destroy this met. We prefer the cryoablation versus the radiosurgery as it is less damaging for the surrounding tissue (lungs and other organs receive a scattered dose that we are trying to avoid). May be there is a good quality cryo doctor in her insurance network - they are called interventional radiologists. There is one at the UCLA (Dr.Suh) but it is out of network again. Do you have an access to the list of the places included? Is it only in CA? There are few excellent cryo drs - Detroit, Providence. We always pay out of pocket for the cryo as we are out of country.
Re. Everolimus - I do not remember anything positive on that front. There is a very hopeful development in PD-L1 drugs - some clinical trials going on, may be talk about them with the oncologist. Other TKI are also avail., like sunitinib - if someone responded to some TKI they usually respond to another one too.

[JolieS]

Hi all

Thank you for your throughtful replies. I apologize for not being super active on this forum, it is hard for me and our family. I know it is helpful for others to share this info, and I deeply appreciate your advice, so I will do my best to post updates on my mom's treatment and status. Just know that I follow your stories and even though I don't write frequently you're all in my thoughts and heart.

We found out last week that my mom has a bone met in her right hip. This is pretty devastating, especially because after going back through her scans I see that in September 2015 it was noted in the MRI of that leg (her primary was located in her right quad). However her onc never mentioned it, despite us bringing up her hip pain. Turns out her pain was not due to arthritis or other effects of the primary resection but due to a hairline fracture from the bone met. Lesson learned, we'll read her radiology reports from top to bottom now . A while back she had a lesion show up in her right femur up near her pelvis which was biopsied and determined not to be cancerous (basically a result from the post op radiation to her thigh). I believe the doc mentioned on the phone today that they had seen mention of the hip met, but chalked it up to the known benign mass in her femur. Honesty that is infuriating because this met is in her acetabulum NOT her femur. SIGH

So we're meeting this week with a radiologist at UCLA to discuss SBRT to her largest lung met and now to this bone met. For the bone met, we may also explore hip replacement if it is a possibility. It was NOT easy to get her insurance company to approve this consult.

We've also been dealing with extremely frustrating and demoralizing back and forth with my mom's insurance to cover the recommended drug treatment. They have denied it out right and the drug manufacturer claims my parents' household income exceeds their limit for assistance. This is insane because the monthly income pre-tax is essentially equal to the amount this drug costs per month (which is criminally high in my opinion) Boggles my mind, I can't even form the words to articulate the anger I have for these evil insurance and pharmaceutical companies.

We're worried that it has been nearly 2 months without any systematic treatment. We've begun researching PD-1 clinical trials, perhaps that will be our next best step. I was really disheartened to see that my mom's votrient use disqualifies her from participating in cerindab trials.

Anyway my mom has been experiencing serious pain in her hip and has been very tired lately. She still works full time. I'm amazed (as is her doc) that she has been walking (albeit with a bit of a limp at times) on it now that we know it's fractured. Not only walking, but dancing and keeping up with her silly daughters Her strength amazes me and I am so happy to be home to help support her and care for her. She is my best friend. F*ck this cancer, am I right???

[D.ap]

Jolie

You guys have been through the gammit of treatments and good old school hard knocks education. I'm sorry for that but it sure seems to of made you stronger . And that I am thankful for.
Thank you for the update. Will write more later

And as for your leaving statement.. Amen

[D.ap]

Hi again Jolie

In looking back on the discussion of your moms history I am curious to 2 things--
1) Were you able to talk to a cryo doctor?
2) Is the radiologist a very experienced SBRT doctor? How many procedures of this technique and what kind of reviews? You are due that knowledge.

Also Jen has had IMRT I think? Ask her what she thinks of radiation and the lungs.

Just a couple things to think about.
Hope the weather is returning to California normal.
Go into personal stories then type in "SBRT" or search on the forum main page.

Its been being discussed for over 10 years on this forum and probably well before that with the previous group .

One link I found on the search
http://radonc.ucla.edu/body.cfm?id=61

Hugs
Debbie

[Olga]

Jolie, hi, thanks for an update. One of our patients had a RFA ablation to destroy a met in the leg bone, with the great success. What size is the met? Also re. systemic treatment denial - some our patients used public media networks to shame the insurance companies with the success, to get their attention - Twitter, Facebook. But sometimes this denial could be a blessing in disguise - some of them can disqualify your mom from some more effective treatments that are coming to a market and be detrimental for her quality of life, so fixing the most concerning mets locally might be not that bad a strategy - Ivan did not had any systemic treatment as of yet in his battle since Nov.2003, just be vigilant with the scans and pick the local treatment carefully with the best quality/experience.

[JolieS]

Hi -

Thanks for your replies ladies. We saw the radiation oncologist yesterday and him and his team are confident they can target the mets to her lung and hip bones with SBRT radiation. We found out that she actually has 3 spots in her right hip area: the largest being 3.5 x 3.5 x 2.5 cm in her acetabulum, a 2.5 cm one in her sacral ala and a .5 cm spot on her ischial tuberosity. When she gets the SBRT radiation he will be able to zap all of these areas at once.

We are trying to determine if she should have a hip replacement where the surgeon will scrape out the tumor as much as possible, then follow up with SBRT for the remaining tumor + other spots to the scaral ala and ischaial tuberosity. Or if she should just get the SBRT radiation. Her hip bone itself is already very weak and the large dose of radiation may cause more damage and break it further, however a hip replacement is much more invasive and has a longer recovery time and may prevent/delay her from starting another systematic treatment.

We have not consulted a Cyro doctor... we do trust this radiologist, he said he performs SBRT to the lung about 5 times per month, <100 times. He has also treated about 40 patients with sarcoma before. His name is Dr. Mitchell Kamrava at UCLA. I believe it would be difficult to get her insurance to approve the referral to a Cyro doc, and we were told that it would likely not be an option for her lung met as it is in the center, close to her heart.

We're definitely thinking about launching a campaign against the pharma and insurance company... Just want to get this treatment plan sorted out and see how our last appeal to insurance goes. Blah.