Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Jen
Looks like the insurance company needs to give you what they show as 'standard procedures' for what they understand their professionals tell them
Just ask for it in writing.
We will hold out hope for an authorization for SBRT!
It seems to me the place the tumor(s) are located are encouraging on vital organs ?
What does your doctor say?
Debbie

Can't you just go to those Obamacare exchange websites and sign up for a private insurance plan that has nothing to do with medicare? I don't claim to understand the tens of thousands of pages that comprise health insurance regulation in the US, but my understanding is that they don't deny coverage to people with pre-existing conditions any more.

The one for California is this - https://www.coveredca.com/

Jen,

Let's call it like it is with the view point of health professionals. None of us are seen differently from their point of view.
When this stance is taken, then there still needs to be accountability to the decision that are made concerning all the patients health care concerns !

I found the wiklipedia definition and all the supportive references very helpful. Especially the treatment to the whole body

Palliative care:
provides relief from pain, shortness of breath, nausea and other distressing symptoms;
affirms life and regards dying as a normal process;
intends neither to hasten nor to postpone death;
integrates the psychological and spiritual aspects of patient care;
offers a support system to help patients live as actively as possible;
offers a support system to help the family cope;
uses a team approach to address the needs of patients and their families;
will enhance quality of life;
is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy.

While palliative care may seem to offer a broad range of services, the goals of palliative treatment are concrete: relief from suffering, treatment of pain and other distressing symptoms, psychological and spiritual care, a support system to help the individual live as actively as possible and a support system to sustain and rehabilitate the individual's family.[6]

Try in read it in it's entirety-- and look at the different supportive documents

http://en.wikipedia.org/wiki/Palliative_care

Love
Debbie

Ivan wrote:Can't you just go to those Obamacare exchange websites and sign up for a private insurance plan that has nothing to do with medicare? I don't claim to understand the tens of thousands of pages that comprise health insurance regulation in the US, but my understanding is that they don't deny coverage to people with pre-existing conditions any more.

The one for California is this - https://www.coveredca.com/

Won't hurt to try, Jen. No denial for pre-existing conditions
I wouldn't be surprised if it is 25% cheaper than your Cobra. I usually prepare a spread sheet to compare to the plan that I have to the one I want to move to..
Debbie

Hello Jen,

If they are denying a procedure that your Onc is saying must be done they can be in a huge amount of trouble... read the posts here to get help an the things they did an also contact
http://www.insurance.ca.gov/0100-consum ... h-related/

I am sorry that you are going into the cobra coverage... an i am sure is scarry I have others that have lost their insurance also completely because of this asshats insurance plan ><

Please, contact the insurance company and ask about their plan that they are supposed to offer you that is out of Obama care reach at the end of the cobra coverage...

Also, contact UCLA and ask for their compassion / welfare care for financial help and also ask what plans UCLA will be taking now that Obama care is starting...

BEFORE COBRA starts ask them about this HIPPA reg...
"Buy an individual plan Under the federal Health Insurance Portability and Accountability Act, or HIPAA, your former employer's health insurance carrier has to offer you an individual medical insurance plan after COBRA expires, Lebherz says.
Typically, the insurer that continued your health benefits via COBRA will mail you a letter explaining HIPAA coverage options. Lebherz urges people to ask the carrier about the coverage at least a month before your COBRA is set to run out.

There's nothing to preclude you from shopping for a private health insurance plan with another insurer that may cost less or better suit your needs.

However, the HIPAA protections allow you to buy a plan from your former employer's health insurance carrier that has no expiration dates, meaning you can keep the coverage as long as you need it provided you pay the premiums.

In addition, your former employer's health insurance company must cover pre-existing medical conditions you have, something not true of other private plans.""

** I found this info on the web because i needed it explained better than i could do it for you lol

Obummmer care is NOT cheap and it maybe better to pay a little more to stay off it...

Jen
This is from 2007"Value of Repeat Resection for Survival in Pulmonary Metastases from soft Tissue Sarcoma"
Hope you find out news soon.

http://ar.iiarjournals.org/content/27/4C/2897.full.pdf
This from the forum home page library

http://cureasps.org/library/6_ASPS_MSKCC_06.pdf that concludes with some really good stats for tumor control
Also wasn't your primary tumor rather small?? There is some statistics that speculate on extended survival as a result of a small primary.

With these readings we need to keep an open mind that the studies are performed on a VERY SMALL group of people and the stats can reflect that
Also from the very little knowledge that is know of ASPS there can be some comparisons to sarcomas that are not indolent or as slow growing as ASPS is known to be

TTYL


Love
Debbie

Hello Jen

I am hoping that December brought you some news so that you can move forward with taking care of that larger tumor
Dr Littrup is a good start if possible or your SBRT procedure as well
Been thinking of you a lot
Happy 2014

Love
Debbie

Jen
Looks like the insurance company needs to give you what they show as 'standard procedures' for what they understand their professionals tell them
Just ask for it in writing.
We will hold out hope for an authorization for SBRT!
It seems to me the place the tumor(s) are located are encouraging on vital organs ?
What does your doctor say?
Debbie

Jen

Hi! How are you feeling? I hope that the sutent is going well for you
I hope that you and Bonni have hooked up on the Medicare insurance and or you've found comparable private insurance
Write when can

Love
Debbie

Sorry, I'm chiming in on this conversation very late but I just want to say we also had an extremely difficult time getting SBRT approved. Actually, we never did. If Kevin hadn't been hospitalized, I don't think we would have. I don't know what it is, maybe it's because SBRT is relatively new technology and possibly expensive, but we could not for the life of us get it approved. Only when Kevin had to be hospitalized, were they able to perform SBRT and even then it was denied by Cigna. Luckily, our secondary insurance through my work finally covered it (Blue Cross/Blue Shield PPO) but it has just been absolute hell.

I'm so sorry to hear of the difficulties you're having. I can't even imagine how stressful this has been for you. From what our team of doctors tell us (our onc, our rad onc, everyone wrote to the insurance company and appealed) some schmuck doctor that sits on the insurance board who is probably years out of touch with current treatments (especially for a rare disease like ASPS) is denying it based on the fact that the majority of cancers need to go through the same chemo/radiation crap. The cite precedence and majority, but really it just comes down to insurance companies wanting to save money, not lives.

Hi all,

So I signed up with Medicare Part A, B and C Supplemental via SCAN Health Plan. Drugs like Sutent (which I'm taking now) will be very expensive (about $8000/yr) but it seems that Medicare is my best choice for now. (I was told by a health advocate that if I cancel / deny Medicare and buy my own private insurance, it may interfere with my disability status with Social Security.) So, I'll see how Medicare goes. It sucks that it's HMO so I can only go to doctors within the UCLA network.

As for the SBRT, we appealed it once and got denied, then did a second level appeal and it got denied again. Anthem blue cross said SBRT is not an approved "standard care" for ASPS. My radonc spoke the the insurance doctor via a peer to peer during the 2nd level appeal, but I guess my old insurance still doesn't think it's worth it. The only reason why I was approved a year ago for my first SBRT procedure was because they considered it like a "charity case try." Since my insurance thinks that I'm not better and there is still disease progression after my first SBRT procedure, they figure it's not worth another SBRT try and they don't think it will prolong my survival or help me enough in my fight against this disease. It's just so stupid though because these insurance doctors don't understand how rare ASPS is and that there aren't many options for us in fighting this disease especially since most drugs aren't effective (long term) for us.

Wangcns - To what part of Kevin's body did he get the SBRT done? Since I have over 100 nodules in my lungs, the insurance company probably thinks that zapping 2-3 nodules in my left lung would do "nothing" to help. So it's much harder for my radonc to justify why having SBRT done is medically necessary.
I'm glad that Kevin was finally covered by your insurance to get it approved.

So I'm having a chest CT scan next month as my 3 month follow up to see if Sutent is effective for me. I doubt it will be…And if it's not effective, my oncologist isn't so sure what drug I should try next since I've already tried about 5 different drugs already (Nexavar, Torisel, Affinitor, Votrient, and a clinical trial infusion). I'm not eligible for Cediranib since I took Nexavar before and they are too similar. Anyone know of any other drugs…?

I heard that Dr Rolle may be retiring soon, if so, does anyone know about when?

Hope all is well. It's sunny now and will be about 80 degrees during the weekend.
love, Jen

D.ap wrote:Jen
Looks like the insurance company needs to give you what they show as 'standard procedures' for what they understand their professionals tell them
Just ask for it in writing.
We will hold out hope for an authorization for SBRT!
It seems to me the place the tumor(s) are located are encouraging on vital organs ?
What does your doctor say?
Debbie

Hey Jen

Do you have the denial letter?
It should spell out why they are denying the SBRT and advocating the drugs instead?
Who is the insurance commisioner in your area and how can you best get in touch with them?
You are a well educated young lady so take the ball and run with it. Incorporate the help of family and friends as you are soo worth the fight. As are all of our ASPS friends!
Your doctors believe in it,SBRT.So should you!

Tomorrows weather here in midwest... - 14..burrrr
Thats what I get for bragging of 60's last Sunday.

You go girl!!
Love
Debbie

Jen,

Kevin had his sacrum tumor (a 5 cm one that was growing into the sacral bone and compromising the spinal canal at the S1 and S2 levels) blasted with SBRT, after conventional surgery (sacrectomy) was considered too invasive. They wanted him to undergo weeks of traditional low level radiation first. They denied it as an outpatient surgery, then they denied it as a hospitalization procedure saying that it should have been done as an outpatient procedure and therefore the hospitalization was unnecessary. Circular denial all around.

Our doctors are also suggesting we do SBRT on the larger nodules in his lungs, but I think we will be in the same boat as you with regards to insurance approval. We are also holding off since we are actually hoping to see if we can do another Rolle surgery, and SBRT makes that more difficult. We suspect the return of his lung mets after his 1st two surgeries was due to the hidden sacral tumor that somehow everybody missed despite scans of that area. I don't even know if the Coswig hospital will accept Kevin as a patient again, but we're still waiting to see how much of the sacral tumor has gone away. I don't know if the osteonecrosis in his shoulder complicates everything.

Also, I heard from one of the doctors we correspond with at the Coswig hospital that Dr. Rolle has indeed retired

Hello again,

Just received my most current chest CT scan without contrast results. My previous scan was on 10/25/13.

I have posted the results below for reference in case anyone is curious...

So it looks like the Sutent is working (for now at least). Who knows how long it will be effective for…probably 6 months to a year. A couple of the target lesions they were following shrank a little. One went from 16x13mm in Oct 2013 to 13x10mm in Feb 2014. Another nodule went from 11x10mm to 10x9mm.

I started Sutent in early November, so I've only been on the drug for 3 months. I'll be continuing Sutent for another 3 months then rescan again. I'm glad I have some good news since I was rejected from SBRT radiation and Dr Rolle has retired. I finally received all my scans and reports from my doctors because I was gathering them together to send to Dr Rolle.. =/ Oh well.

Weather is sunny and great in SoCal. Hope everyone has a wonderful Valentines day.

Much love to all~
Jen

CT SCAN RESULTS BELOW:

INDICATION: PT WITH METASTATIC ALVEOLAR SOFT PART SARCOMA, RESTAGING
SCAN, MULTIPLE LUNG NODULES ON THE LAST SCAN, SWITCHED THERAPY

TECHNIQUE: A chest CT was performed on a Siemens Multidetector CT scanner.
Volumetric acquisition was acquired at 1, 3, and 5 mm slice thickness ,
using a 29 cm field of view. Coronal, sagittal, and MIP sequences were
reconstructed from the axial data.


RADIATION DOSE:

The patient received the following exposure event(s) during this study,
and the dose reference values for each are as shown (CTDIvol in mGy, DLP
in mGy-cm). Note that the values are not patient dose but numbers
generated from scan acquisition factors
based on 32 cm (body, "a") and/or 16 cm (head, "b") phantoms and may
substantially under-estimate or over-estimate actual patient dose based on
patient size and other factors.

Chest (12a, 412);


FINDINGS:

ONCOLOGIC FINDINGS:
Stable size of all the dominant, at least 7, pulmonary metastases with
target lesions measured below. Again seen is a stable 18 mm right lower
lobe nodule with broad-based contact with the left atrium.

Stability of multiple, at least 100, subcentimeter pulmonary macro and
micronodules.

Stable appearance of right lower lobe coalescent radiation fibrosis

TARGET LESIONS:

1. Right lower lobe nodule (radiated):

2/11/2014 = not measurable (not distinguishable from surrounding fibrosis)

10/25/2013 = not measurable (not distinguishable from surrounding
fibrosis)
7/24/2013 = not measurable (not distinguishable from surrounding fibrosis)

4/19/2013 = 14 x 12 mm (2-68)
1/4/2013 = 17 x 14 mm (3-69)

2. Lingula nodule:

2/11/2014 = 13 x 10 mm (2-46)
10/25/2013 = 16 x 13 mm (2-53)
7/24/2013 = 14 x 12 (4 254)
4/19/2013 = 12 x 10 mm (2-56)
1/4/2013 = 11 x 10 mm (3-57)

3. Left lower lobe nodule:

2/11/2014 = 10 x 9 mm (2-57)
10/25/2013 = 11 x 10 mm (2-58)
7/24/2013 = 9 x 9 mm (4-171)
4/19/2013 = 9 x 7 mm (2-61)
1/4/2013 = 9 x 7 mm (3-61)


ADDITIONAL FINDINGS:
Radiation fibrosis in the right perihilum, stable.

Stable appearing pleural thickening effusion in the right paraspinous
region at the level of the radiation fibrosis scar.

Heart is normal in size without evidence of pericardial effusion.

Stable thoracic osseous structures with chronic fractures of the right
lateral 5th and 6 ribs.

Upper abdomen: Visualized structures appear unremarkable.

IMPRESSION:

1. History of sarcoma with stable appearance of dominant pulmonary
metastases with target lesions measured above. Stable amount and size of
pulmonary macro and micronodules.

2. Stable appearance of coalescent radiation fibrosis involving the right
lower lobe. Previously described 3 foci of nodular enhancement within the
fibrosis cannot be evaluated on current CT scan secondary to lack of IV
contrast.

Dear Jen,
Happy Valentine's Day and thank you for sharing the very good and encouraging results of your most recent lung CT which brings much happiness to my heart It certainly does appear that the Sutent is thankfully working to stabilize your disease and shrink some of your lung mets , and I am holding very tight to Hope that you will continue to have a very successful response to the drug with tolerable side effects. I am perplexed as to why contrast was not used for the CT scan since that provides the most definitive and accurate results, and the comment is made in the radiologist report that "Previously described 3 foci of nodular enhancement within the fibrosis cannot be evaluated on current CT scan secondary to lack of IV contrast." which raises the question as to why contrast was not administered? I recommend and encourage that you request contrast with your next CT scan to ensure that you are receiving the most accurate scan results. In the meantime, take good care of yourself, celebrate your good news, have a wonderful Valentine's Day, keep in touch as you are able, and know how very much I am sharing the great joy and strengthened Hope of your good scan results.
With happy hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

Dear Jen and other ASPS Community Members,
Does anyone have confirmed information that Dr. Rolle is retired? I had recently posted a comment in that regard on the Facebook ASPS site, and this is the perplexing response that I received from 'F' Eide who is founder of the Facebook ASPS site and a former participating member on this CureASPS Discussion Board: "We don't think he's retired. We just spoke to him today - Brock's been helping with proofing his research papers in English. I do know when we last saw him years ago he was thinking about who could carrying on his practice." If someone could help resolve this contradiction in information it would be deeply appreciated as it is important for ASPS patients to know if Dr. Rolle is actually retired or if he is still actively practicing and accepting patients for laser resection.
With special caring thoughts and continued Hope,
Bonni