Jen from California - Dx 2009

[jenhy168]

Thanks for the advice Mario.

Amanda -
Yea I know, it has been very hot again the past week. It seems like it's cooling down now though
For the met you got on your rib, how did they first detect it and conclude it is a met? Through a full body bone scan? Did they have to do a biopsy or another MRI or PET scan to make sure it was actually a met? (Like I said in my post, the radiologist who read my scan said that the thing they see in my bone scan on the 8th right rib had some uptake but doesn't seem like it is mets but rather due to the radiation from last year.) How will I know for sure this is true and accurate...?

For anyone who has gone to Dr. Littrup in Detroit for cryo, did you have to fly there to get the initial consult and then fly there again for the surgery?

[Olga]

Re.Dr.Littrup review - he does it long distance, you first contact Barb - call her or e-mail her and tell her about the situation and that you are sending them the CT on a CD (include 2 consecutive CT scans so they can compare).
Barbara A. Adam RN, MSN, NP-C
Karmanos Cancer Center
Interventional Oncology -Image Guided Therapy
313-576-8042
DMC pager 313-745-0203 #95883
e-mail adamba@karmanos.org

Then you send them the disc to
The mailing address is:
attn. Barbara A. Adam,
Dr. Peter Littrup
Karmanos Cancer Center
4100 John R
Detroit, MI 48201
Mailcode HPO2RR
write you name and dates of the scans on it and include a note (Dr.Littrup, please review my scans re. possible cryoablation, name, date). He reviews the scans and they give you an answer by the e-mail.

all this info is stored here:
http://www.cureasps.org/forum/viewtopic ... 1292#p1292

[D.ap]

Hey Jen
How are things going in your neck of the woods ?
Josh is back at work after having his right lung laser treatment
only 7 weeks ago ! He will be seeing a pulmonologist to help to strength his lung(s) further
Hope the cooler weather and lack of ragweed are helping you too
Write when you can
Love
Debbie

[jenhy168]

Hi all,

I just saw my oncologist this week for regular checkup and to discuss the bone scan results. He said my bone scan results show uptake in the rib but is unlikely to be met and more likely to be due to SBRT radiation to that area of the lung. So it shouldn't be anything to be concerned about.

I am scheduled for a Chest CT and pelvis / abdomen CT w/wo contrast at the end of the month. If the results show more growth, I will stop Pazopanib and start Sutent. My doc said he would have me take a continuous lower dose of sutent instead of doing 4 weeks on and 2 weeks off.

I haven't inquired about cryo with Dr Littrup yet...I will wait to see the results of my next scans first.

Hope all is well with everyone~ Weather is good here ..had a little bit of rain and starting to feel more like Fall.
Jen

[jenhy168]

Also - I know that many of you have gone to Dr. Rolle to get innumerable (greater than 100) amounts of mets lasered away, but what are Dr. Rolle's factual reasoning / justification / explanation of why operating and removing as many mets as possible is the best mode of treatment?

What are the pros / cons?

Additionally, what are the immediate and long term benefits of having this procedure done?
- - I read that some of you that have gone to Dr. Rolle are stable (no new mets) and some still get new mets (either in lungs or elsewhere)...

I'm still on the fence on this - probably because I don't know all the facts and both my primary UCLA oncologist as well as my radiation oncologist advised me against it...keeping in mind that both doctors may be a bit unfamiliar with it.

The more info the better...
Thanks!~

[D.ap]

Hello Jen
It's so good to hear from you. Sounds like you are purging forward with your care in a very productive way
The scans sched look good to me : )
How is the weather treating you ?
My question to the doctors who are skeptics is ,where in the USA can a person with ASPS get 70 mets removed in one lung to to lengthen there life by possibly 10 years plus and spend less than $20,000 doing it?
Ask them this question Would they rather have 100 plus tumors in their bodies or less than 40
And not pressing and not growing SLOWLY against vital organs. Also the removal could virtually make the disease a chronic disease and keep it from being a terminal disease. We do not know enough to be certain what the future will bring


Cyro and other treatments can cost that much for 1,2 or 3 as I understand it and you don't always remove the most dangerous mets by picking and choosing. As Olga has pointed out the smallest mets don't always show up on scans and Dr Rolle can feel them during the procedure and remove them at their smallest size
Near the heart or near the arterial arteries or closing off airways these mets need to be 'cleaned' out if the lung cause as you know the lung is VERY important organ to have working as close as 100% as can be

Ivan and Olga can definently give you their best reasons TO have the surgery
Here's to a good scan
We will be thinking of you
Stay strong

Love
Debbie
Ps Jen do you have an HMO?

[D.ap]

Jen
I hope this letter finds you collecting the info you need to plan the next move!
Got frost here last night..fall is officially here

Write when you are able

Debbie

[jenhy168]

Hi all,

Hope everyone is well. Sorry I haven't updated sooner. Had my chest CT scan done about a month and a half ago. Bad news - there was more gradual growth in the nodules as well as new nodules that have appeared. I have stopped Pazopanib and have started taking Sutent for the past 4 weeks. Sutent is treating me okay so far, tolerable with some side effects like hand / foot syndrome, tiredness and upset stomach.

I know most of you disagree with this, but I'm trying to get SBRT treatment to some nodules close to the heart in the left lung that are getting kinda big. About 19mm. The procedure was denied by my PPO anthem blue cross, but my radonc doc appealed it, so we'll see if it gets approved. I hope to get it done in January, otherwise I can't get it done at all since my COBRA insurance ends on 1/31/14.

I don't think I'll be pursuing Dr. Rolle anytime soon due to financial reasons, and it may be too late for me to pursue cryo by another doctor from out of state since I only have one month of insurance left. :/

It's been getting very chilly here in SoCal…colder than most Winters we've experienced. Hopefully it warms up.

[D.ap]

Hi Jen

I am sorry that the pazo wasn't able to do more for your lung tumors.
Do you know the reason the insurance company turned down SBRT the first time?
That would help us try and build a case for some type of treatment.
Also, is there anything out there in your budget to convert to from your COBRA? My experience with COBRA is it is a lot more expensive than individual cost. Even outside of a group. With the new health care system an individual young girl should be able to have a premium within reason?

It's been 4 years since your DX. How big were the tumors at the start?

I hope you get some answers from the insurance company soon
Cool in southern Cal? 6 degrees here in the Midwest.

Much love
Debbie

[D.ap]

Ps Jen
-93 C in Antarctica

[Olga]

Jen, do they send you a letter when deny the coverage or just call?
Re. "most of you disagree" - in given circumstances I think you have a very limited selection of options available and pursuing some of them is VERY reasonable, especially since you have a very good radiation doc there!

[jenhy168]

The coldest it has been in my area is about 39 degrees at night…haha ..I know that isn't cold to people from the Midwest or East Coast. But there has been a very cold wind chill…so these temperatures feel like it's "freezing" to me Socal people are definitely spoiled with year round good weather.

When I was Dx 4 years ago (25 yrs old), my primary tumor was already pretty big…maybe about 3 inches? I don't remember the exact measurements. Since I noticed the lump when I was about 16 yrs old, it's not surprising that my first CT chest scan 4 years ago after diagnosis showed numerous lung nodules/mets. I honestly can't remember how big the largest mets were 4 years ago…probably the biggest were around 10mm. I really had no idea what I was really doing 4 years ago when I was first Dx, since my family and close friends never dealt with cancer before. Everything was basically up to me to handle, so I picked the best cancer hospital in the area, then I just followed what the docs suggested.

I haven't received the initial denial letter yet in the mail, but my radonc already appealed the case with insurance and I should hear the answer from Blue Cross on Thursday as to what the final decision is. I'm sure I will receive the denial letter in the mail soon, since whenever they deny something, they send a letter. They denied my SBRT radiation procedure in May 2012 as well, but approved it after my doc appealed it Hopefully the will approve this time again. Additionally, I think they initially denied my case because it's hard for the doctor to justify radiating a couple of the larger nodules when I have over 100 nodules between both lungs. Also, the nodules that we want to radiate is close to my heart and near major airways / breathing pathways. So I'm guessing Blue Cross probably thinks the operation won't make much of a difference to my long term survival.

Since my COBRA ends on 1/31/14, I have the option of purchasing Medicare Part C or D. I am already automatically enrolled in Medicare Part A & B as of this month since I receive Social Sec disability. My COBRA payments are currently $500. I think Medicare Part C or D will cost about the same or more…Anyone have any experience with this?

I am afraid I cannot afford a lot of future medical services such as CT's and chemo drugs like Sutent since cancer drugs are SO expensive without insurance. I think Sutent costs about $2-3K a month with no insurance. Even if I do purchase Medicare Part D, I will probably need to pay over $1K out of pocket for a month's worth of Sutent, which I can't afford. Not sure if Medicare even covers CT scans. So yeah, not sure what I'm going to do since I don't work and won't be able to afford much.

Any advice on Medicare would be much appreciated….

Thanks all

[Ivan]

Jen, with all the fanfare about Obamacare - are you not able to get coverage?

[Bonni Hess]

Dear Jen,
Thank you for your thoughtful update and all of the shared information. I am so very sorry about your failed Pazopanib treatment results which unfortunately seems to be the same disappointing results that most of the Pazopanib patients on this Board have experienced as well as other non participating Board members who took Pazopanib who I follow/have previously followed. We were all so Hopeful that Pazopanib would be more successful in providing significant and sustained disease stability, but Hopefully it will be for at least some ASPS patients.
Given the prohibitive cost of Sutent, have you given any consideration to enrolling in the current Sutent/Cediranib Clinical Trial at NIH in Maryland so that you could receive the treatment drugs for free?
Regarding your question about Medicare coverage for scans, Brittany has been on Medicare for about the past eight years since her COBRA insurance expired. Her CT scans and MRIs have been covered by Medicare. We also had supplemental insurance coverage for her to help with her prescription costs, but we have recently been notified that they will no longer provide supplemental coverage for her after the end of the year (with no specific reason given!) so we are scrambling to try to come up with a different suppemental plan.
Since you had a previous successful response to your lung SBRT treatment, it seems that is a good treatment option to try to shrink and destroy your largest and most concerning lung mets which are located near your heart and major airways. Hopefully once they are successfully treated and destroyed, your tumor burden will be decreased and the Sutent or some other type of systemic treatment will be able to shrink and destroy your remaining numerous smaller lung mets. In the meantime, have you had any other recent scans including a brain MRI, bone scan, and abdominal/pelvic CT or MRI to determine if there are any other mets in any other areas of your body other than your lungs? If you have not already done so, it is extremely important to have complete scans and not just monitor the disease with chest CT's, and especially since you had increased disease progression and growth in your lung mets while taking Pazopanib.
My greatest Hope is with you for a very successful response to the Sutent, and an approval by the insurance company so that you can quickly move forward with treatment for your large and dangerously located lung mets.
Take care dear Jen, stay warm in your "cold" and windy California winter weather, enjoy the holiday season as much as possible, and keep in touch with the Board as you are able.
With warm hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[jenhy168]

Hey Ivan,

I haven't yet called insurance companies to get more detail about Medicare Advantage. I'm sure I can get coverage, I'm just afraid that even with Medicare Advantage, it won't be able to cover much of the expensive costs for me especially since I'm on Sutent.

Bonni - That's great that Brittany has been covered by Medicare, except for the fact that the supplemental coverage ends this year. Is it better to enroll in Medicare Part C or D? I'm thinking Part C is better for people with cancer…
I'm not eligible for the Sutent/Cediranib Clinical Trial since I tried Nexavar 4 years ago. That made me ineligible for the trial.

Further, my SBRT Appeal was denied. I have one more last chance to do a 2nd level appeal. They said SBRT for ASPS is a non-standard treatment / not approved to help long term survival of patients with multiple lung mets. I should be receiving the denial letter soon with more details. I talked to the appeals dept and she said that my first SBRT done in 2012 was denied and later approved because of Goodwill. =/ This means that my 2nd appeal will likely be denied. I'm researching to find literature to support my case for getting SBRT and how it'd be advantageous for me to get it but since it's pretty rare to have ASPS patients being treated with SBRT, I'm afraid there's no literature out there to support my case.