Josh from Kansas - Dx Sep 2012

[Bonni Hess]

Hi Josh and Olga, Brittany's LITT procedure that was done in Boston by Dr. Black nine and a half years ago did not actually treat a brain met as it was determined during the procedure that there was thankfully no tumor reoccurrence in the resected tumor bed. Brittany was not on a Clinical Trial at that time, but her insurance did thankfully covèr the procedure. LITT would certainly be worth exploring as a possible alternative to resection since it is a minimally invasive treatment for brain tumors and was, at least for Brittany, covered by her insurance. With special caring thoughts, healing wishes, and continued Hope, Bonni

[Josh]

Brittany had one of the brain mets treated with the LITT (it is a laser based ablation not RFA) in Boston few years ago by Dr.Black

I'm kind of unclear on what the Neurablate procedure actually is. The insurance company cited their policy on "Radiofrequency Ablation of Miscellaneous Solid Tumors Excluding Liver Tumors." But this is indeed a laser based surgery. I guess maybe we should figure this out.

The Dr at CTCA in Chicago has reviewed my scan and believes that this tumor is a candidate for the six pillar approach. Another option we are looking in to is Presbeteryn in NYC, which is ranked 2nd in the nation. KU (where Neuroblate would occur) is ranked #12, which is really good. CTCA I am unsure about their record.

[D.ap]

I'm kind of unclear on what the Neurablate procedure actually is. The insurance company cited their policy on "Radiofrequency Ablation of Miscellaneous Solid Tumors Excluding Liver Tumors." But this is indeed a laser based surgery. I guess maybe we should figure this out.

Found this link Josh--on varicose veins in case you need it for future cosmetic updates on those unsightly veins.

http://www.sfveincenter.net/laser-ablat ... y-ablation
Both ablation techniques use thermal energy but by different tools and markedly different techinques .


the neuro-ablation procedure

http://www.medgadget.com/2013/04/neurob ... roval.html

[Josh]

I guess my confusion arises because I understood that Neuroblate is a LITT procedure. I don't understand why insurance is citing RFA policy. Maybe I am way off base here...

The good news here is that the surgeon, the hospital, the Neuroblate manufacturer have all agreed to donate their services pending insurance approval. This is really great.

So my only dilemma is which surgery to go with. Could Neuroblate fail to kill the whole tumor? Would the Six pillars be better in this respect? Also waiting to hear back from UPMC in Pittsburg to see what they can offer. Lastly, we are waiting on Dr Tap of MSKCC to weigh in on his opinion on the route we should take.

[Olga]

Josh, do you have any idea if insurance is going to approve the Six pillars or other surgery if it is done not in your home hospital (going out of network)? also you can probably object their citing RFA policy, may be there is "RFA and other ablations"?
In some sense the surgery is better than ablation as it takes the tumor tissue out with the margins, but it is hard to say if the location allows for the good margins. When Ivan's brain surgery was discussed, the neurosurgeon gave us all 3 options - an open surgery (they all are miscrosurgeries now some smaller than others), the LITT ablation and the radiosurgery. He said that the surgery has this clear margins advantage but the location was easily accessible in our case.
When picking the route as how to proceed, the technique is important, but the experience of the person using this technique is even more important - i.e. if you can have the best brain surgeon to perform an open brain surgery it would be more beneficial than the less experienced neurosurgeon to perform the LITT procedure or this new Six pillars surgery. Ask them what is the number of cases they performed with LITT and Six pillars each.

[D.ap]

Josh
When the insurance company responded with a denial they were responding to the neurosurgeons billing I believe
Ask the nurse or doctor how they coded the billing
In reference to the ablation verses the surgery I've read more than one place that ablation causes a lot of swelling post op as compared to surgery
Also I would be courious to know how seeding of the tumor is prevented with the ablation probe removal.
You both are doing a great job. Hang in there and continue the questions

Love you lots
Mom

[D.ap]

Josh
When the insurance company responded with a denial they were responding to the neurosurgeons billing I believe
Ask the nurse or doctor how they coded the billing
In reference to the ablation verses the surgery I've read more than one place that ablation causes a lot of swelling post op as compared to surgery
Also I would be courious to know how seeding of the tumor is prevented with the ablation probe removal.
You both are doing a great job. Hang in there and continue the questions

Love you lots
Mom

The seeding issue

With heated ablation


"At the end of a treatment session, the active needle is slowly retracted to heat and cauterize the needle pathway. This action prevents bleeding and tumor seeding of the needle track by destroying any cell that becomes attached to the needle or dislodged in the needle tract"

http://www.cc.nih.gov/drd/tumortherapy.html

Love to all
Debbie

[D.ap]

Hello, Cureasps.org members! My name is Josh and I was recently diagnosed with ASPS (September of 2012). Here is a brief personal introduction:

I am currently living in the Midwest United States (near Kansas City). I have lived here my entire life, attended some college, screwed around wasting time, just being a general derelict. During this directionless time in my life, I met and befriended a wonderful woman, and our friendship eventually evolved through dating in to a wonderful marriage. We have a 4 year old daughter, and the two of them have given me every reason I will ever need to stop wasting time and make something of my life. I am now 32. Two weeks before my diagnosis, we had just bought the house of our dreams. As you can imagine, this disease has really brought a lot of stress in to our lives.

Now, a brief history of my case:
My primary tumor was on the front/right side of my right thigh, and I mistook it for a muscle knot for quite a long time before seeking a doctor's opinion. Luckily, he directed me to a skilled sarcoma surgeon who ordered an MRI of the site and then removed it completely with no damage to my leg to speak of. For this I am very grateful. He followed that with a PET scan of my whole body, which revealed suspicious lung nodules. A CT scan verified this.
A month later, a VATS was performed, and 3 nodules were removed, the largest of which was 6-8mm (this was also the largest nodule shown on the CT scan). Biopsy revealed ASPS mets. I have several remaining mets (oncologist has stated he has not counted how many, but thoracic surgeon said that there were too many to remove and still preserve lung function).
Now I am learning about treatments and figuring out how I want to attack this disease. My wife and I traveled to NIH/NCI in Bethesda, MD for a consultation on joining the Cedirinib trial. My onc found the trial for us. He also wrote me a prescription for Sutent in case I did not want to participate in the trial.

I just got a second CT scan done on Friday (2 months after initial CT scan) which will tell us the progression of the disease, and am awaiting results. NIH has said that eligibility for the trial is contingent upon measurable disease progression, or the presense of a met greater than 1 cm. None of my mets are > 1cm. I had an MRI of my brain done also. The report says that there are no mets present, but they did note bilateral lesions consistent with possible multiple sclerosis. Which brings me to my first question: could these lesions actually be mets?

After reading several stories on this site over the past weeks, I am hoping that I can consult with Dr. Rolle. I do have very good insurance here in the States (again, I am inexpressibly grateful as there were extended periods in my life where I was entirely uninsured), but I am imagining that they will still not cover a procedure performed in Germany. If anyone has any advice on getting insurance approval for this procedure, it would be very much appreciated. If I have to pay for it, well, we will find a way. I am absolutely determined to live to see my daughter graduate from college. Amazing how quickly your goals can change from saving up and eventually retiring with money in the bank to just staying alive to see your kid grow up.

I am very grateful I found this site and thankful to the founders who set it up and maintain it. As terrifying as this diagnosis is, I am glad to read survivors stories and see that I am not the only person battling this.

I would very much appreciate some advice about recommended treatments from fellow patients. My onc was assigned to me by my surgeon, and, while I am sure he is just busy with all of his patients in addition to having never treated metastatic ASPS before and feeling overwhelmed, he seems fairly unhelpful. He doesn't really satisfactorily provide us with useful info (for example, I asked how many mets they saw in my lungs, and he didn't know) and his personality doesn't really mesh well with mine (he always seems somewhat inconvenienced by my questions and in a hurry to be done with our meetings). If anyone knows of an onc experienced with ASPS in the Kansas City area, we are very open to suggestions.

I will update with a more accurate timeline of my scans if that would be helpful, and if anyone has any advice, please share.

My current plan is to go on the trial if accepted. I would like to consult with Dr. Rolle, but will he be willing to review my scans remotely, or will I have to travel to Germany for a consultation? I have used all of my vacation and sick time at work and am trying to avoid more time off if possible. If Dr. Rolle and the trial are not options, then my last resort will be a Sutent prescription, or, if the doctors think it is a good idea, do nothing for a while until progression can be measured. One important detail is that if I start Sutent, I will be permenantly ineligible for the Cedirinib trial. I should have more info in the morning once I get the results of the newest scan. Wish me luck

Thanks so much for reading, and offering any advice you can.

We've come full circle since Joshua's first entry September 2012
However we've made strides in progress from that first day that we found Cure Alveolar Soft part Sarcoma International.

Love to all and we are on a mission to be here for a long , long time with lots of input and information!

Keep the faith
My love as well as my families to yours--we love you all much,

Debbie

[D.ap]

February update:

This update actually starts back last August when I had a brain MRI. The report reported no evidence of cancer, but continues to show the effects of a demyleniating process. There was a problem getting an appointment scheduled with the neurologist to follow up so we just did the report review with our onc and scheduled a follow up with the neurologist for December.

As December came around, we went in to review the scan with Dr. Lynch (neurologist) and we noticed a tiny suspicious nodule that the radiologist had missed back in August. She ordered a follow up MRI which revealed 3 nodules: a 1 cm nodule deeply embedded on the left side, two < 1 cm nodules on the right near each other. These should have been caught at a much smaller size, but the radiologist missed it.

We proceeded to schedule SRS which was completed beginning of January. The one-month follow up report said that the larger had grown to 1.4 cm, and the smaller one's had grown by 1 cm, but he suggests this could be a result of swelling from the radiation and not actual growth.

We just completed another MRI and are awaiting the results right now. We have consulted a neurosurgeon who reviewed the scan preliminarily, and believes that the larger one did indeed escape the radiation (He says if it did even shrink, it is not as much as expected had the radiation worked). He is going to perform Laser Ablation to the deep larger tumor next week. We will continue to monitor the smaller ones, which he said are also candidates for traditional surgery if they show evidence of also escaping the radiation.

Unfortunately, this disqualifies me for the Cediranib trial for now. In the meantime, I have begun taking Temodar, which was "an agent of potential benefit" shown on a molecular profile we had done.

At least now we don't have to fight to get MRIs done...

Hi all,

Joshua's neuro ablation was completed without any neurological issues on April 1st. No, really on April 1st

We've scheduled a Mri for the 27th to view the results.

Joshua has had to be on continuous doses of dexamethasone sincen December 18 of I believe 12mg a day broken down into every 4 or 6 hours of course then ending on 2mg a day by April 1.

We began with 24 mg for 4 days and are currently on 6mg? We hope to end after 22 days or before on 2 mg.
So far the symptoms of the neuro ablation with every of decrease dose has been uneventful and we hope to keep going that route.

Also in February and March , prior to the neuro ablation procedure in hopes of keeping further metss from appearing in the brain. They were finished on March 17th. We took 250 mg of temador for 5 days each month .

Our Ct scan of the chest was performed on April 8th and I am sorry to say that the lung tumors are progressing in spite of our 2 courses of temador.
Granted we are on an oral fairly tolerable medicine and I am thankful for that. Also we have been on only 2 doses as well.

The largest of our lung tumor at this moment is 2.6cm x 3.1cm. Up from 1.8 cm x 2.0 cm in October . I am trying to consolidate the measurement of the other tumors to report as they have followen off the current report as Josh has over 150 notable areas to see as a result of the lung surgeries in Germany. Also not having those 150 tumorsat I am so thankful for

Temador has thus far been studied with brain cancers and clinical trials on the lungs.

Apparently some tumor types of cancer have been known to be " protected " by the dexamethasone so as to prevent the chemo, Temador , from entering the cancer cell and performing the DNA destruction.
The protection with dexamethasone begins as the immune system is suppressed /compromised and then consequently the dexamethasone spars grow in the process of "helping the body " to combat swelling in our case . Some cancers or possibley the variety of ASPS Josh has , can then take advantaged and grow. We may of been taking care of micro mets, again speculate, but it is time to take care of the larger tumors as they are the real issue now.


The growth talk is all speculative of course and as we have found out on Friday our news, we are spending the weekend figuring out which way to go from here and which questions to ask what doctors .
We need the steroids for another 10 days or so and we are due to take another dose of Temador on Monday night.
We will be talking to our Neuro surgeon and getting his angle on an accelerated DECREASE in the dexa and talking with our Oncologist who is in charge of the chemo to what are choices would be Monday.

The good news is both doctors are in charge and on our most current board of doctors in Joshua's care and talking continuously to each other.
From the get go we have been the search and destroy family and we mean to stay the course as long as humanely possible with our doctors hopefully on board.

Also we will be re-approaching an ablative doctor to see if that is an option.

The growth of the lungs leads us to believe that the environment or combination of drugs needs to be stopped so as to discontinue other unwanted growth(s).

Will update when able.
In the mean time please include us in your prayers for guidance and healing .

Got to go . Grand daughter awakening from sleep over. This grandma NEEDS to go play and spend time with her before parents want her back. Josh and his wife will NEED her later today too.

Till next time

Much love
Debbie and family

[MartinBube]

Hello Debbie

good to hear that the ablation went well and that will finish well.

are you considering another surgery regarding the lung mets?

Much love and healing thoughts

Martin

[D.ap]

Hi Martin

Thanks for the moral support. It is much appreciated.
Yes we are looking into cyroblation. We've sent the CT scan of the abdomen pelvic chest area to a noted apprentice of a doc
who practices in Detroit. We are hoping to perform one or more at a time.
You can read more about him here

http://www.cureasps.org/forum/viewtopic ... 1003#p7729

Will update when we find out.
Take care
Love
Debbie

[D.ap]

Joshua's SRS and temodar report
http://www.cureasps.org/forum/viewtopic.php?f=69&t=1054

[D.ap]

Hello all

It's with much relief and lots and lots of happiness that I share with you all that Joshuas largest tumor is being called dead from the neuro ablation ! No vasular feed can be seen and the edges are all that can be seen
The brain is "not angry" with edema,as per Dr Chamon ,so Josh is going off steroids which he is currently on 2 mgs of dexamethasone
The ill defined images are gone , both on the right and leftside ,and the right side tumors have been reduced by at least 2mms!
Will write more later
Thank you all for your prayers and support
We couldn't of done this without you all
Love to all
Debbie and family

[Olga]

This is a great news. I am not sure if any of this success could be contributed to Temodar as all brain mets were treated locally - and decreasing means there is a slowly dissolving necrotic tissue left after the radiosurgery. The ill defined areas were undetermined so hard to say what it was. Good to have this new brain mets treatment modality on board - Neuroblation.

[MartinBube]

Excellent news Debbie. I'm very happy to hear this