Josh from Kansas - Dx Sep 2012

[Bonni Hess]

Dear Debbie,
It is with the greatest joy that I just read your update with the wonderful news about the VERY GOOD!! and encouraging results of Josh's Thursday's five week post neuroablation brain MRI!! I am doing the happy dance, sharing your family's immense happiness, and joining all of you in celebrating the great relief, joy, and strengthened Hope that these incredible scan results bring . Have a well deserved relaxing and happy weekend, and keep the Board updated on the next step in Josh's courageous ASPS journey regarding treatment of his concerning liver met and lung mets and possible new systemic treatment plans.
With deepest gratitude for your thoughtful sharing, and with happiest hugs, healing wishes for dear Josh, much love, and continued Hope,
Bonni

[D.ap]

Hello all

Quick up date.
Josh is in the process of taking another course of Temodar, 5 days at 250mg.
He has recently experienced some headaches and as a preventative of the swelling reoccurring he is back on dexamethasone liquid mind you , of 2mg.
The only difference from the February and March and April dosages will be that we are on a very low dose of dexamethasone, 2 mg, verses 12mg , 8mg and 24mg respectively.
As you may recall there can be a conflict where as dexamethasone keeps the Temodar from destroying the DNA in cells so inadvertently protecting all cells including the cancer cells during the treatment.
Also I am in hopes that Joshua's appetite will prevail as the steroid sure helped with that the other 3 times.

Anyway we will have answers on or about June 18 after our MRI of the brain to how things are doing with the ablated and SRS treated tumors.
The liver tumor we are still consulting several people in hopes of convincing a reputable doctor into ablating it. The current thought with any surgery has been that the effort to eliminate the tumor can cause additional growths, satellite or in transit mico-mets to pop up outside of the positive margins as a result of the bodies effort to repair the damaged tissue. The Temodar is an effort to possible keep that from happening as well as treating Joshua's brain for any possible additional tumors. Brain or otherwise.

Josh has had some numbness on his left foot as well as a bit of a slight shakiness. We are looking for those to resolve after the discontinuation of the steroids .Diet really plays a role in keeping the shakes down as I could tell when he hadn't eaten. The low blood sugar shakes.

Hope all is well with you and yours, always

Will update later
Much love
Debbie

[D.ap]

In a effort to begin to understand what the doctors are saying about possible sparing of growth to Joshua's lungs or anywhere else in his body for that matter by surgical removal of additional tissue , I had to first figure out what they were talking about.

They weren't discussing recurrence per say as the added satellite, in-transit growth is general -offsite/outside good margins but in the same region- part of the metastatic primary or just micro-mets ? It seems in melanomas it is associated with there lymphatic systems as they have a propensity to travel that highway.

Found articles on melanoma

http://www.uptodate.com/contents/cutane ... metastases

from the link

"The distinction between a local recurrence and in transit metastases is often difficult, and the definitions are somewhat arbitrary. For establishing clinical trial endpoints, a local recurrence is defined as regrowth within 2 cm of the surgical scar following definitive excision of a primary melanoma with appropriate surgical margins [5]. Nodules growing more than 2 cm from the excision scar are termed in transit metastases. In reality, these arbitrary definitions often have little "bearing on management decisions."


We've come along ways from our thoughts of surgery on cancer 50 years ago in which we thought that the air during surgery caused spread of the cancer. Thank goodness!

Not trying to jump back and forth on the surgical/ablative thoughts of some of the todays sarcoma doctors, but if not for Josh having had the opportunity to have over 140 tumors removed from his lungs in 2013, I truly believe he would not of seen his daughters 6th birthday if we had chosen no removal because of the possibility of sparing growth.

[D.ap]

Hello all

We spoke with our primary oncologist yesterday after we had our extended CT of chest/abdomen and our 3 1/2 week MRI of the brain performed.
The brain MRI gave us excellant news of " decreased size, diminished enhancement and improving vasogenic edema associated with the rounded dominant( ablated) lesion with in the left coronaradiata"

Its gone from 3.3cm on May 21 to 2.5cm. The SRS lesions on right have remained stable. Great news. We are now down to 4mg of dexamethesone and have not had any headaches or suggestions of seizures.

However our liver lesion and lung lesions were not players with the temador treatment. Not to suggest that temador helped in anyway with the brain.

The liver from our April 8 to june 13 went from 3.5x2.0cm to 4.3x2.5cm
The lung lesions are showing increases between 1mm and 5mm from April 8 according to report, however the impression says
VERY SLIGHT INCREASE IN SIZE OF INNUMERABLE PULMONARY NODULES THROUGHOUT BOTH LUNGS. NO NEW ABNORMALITIES.
The doctor gave a a name of a doctor at Menorah to see about RFA and we have a call into New york Memorial sloan kettereing to proceed with ablating the liver tumor.

Will update later
Prayers welcome

Love to you all
Debbie and family

[Olga]

Thank you for an update, I was wondering how is Josh doing with his persistent after radiosurgery treatment edema (swelling), it is a very dangerous and difficult to treat situation with the high intracranial pressure. It looks like it is getting down eventually on steroids and body's own ability to dissolve the necrotic tissues. And it looks like the additional laser based treatment that physically eliminated - burned - bigger brain mets was right on spot and that necrotic tissue is also getting dissolved as the time goes.
It is a pity that the liver met was not treated on a smaller size but still it is not that uncommon anymore to treat close to 30 mm liver mets by the ablations, cryo or RFA. I am sure that MSK will provide some good advice as what is the best modality. Are they covered by Josh insurance? The RFA ablation is avail. in many places now, but as usual you want to have someone with the bigger experience esp. since it is more than 20 mm, it increases the chances of the met being treated completely without complications.

[D.ap]

Thanks for the encouragement Olga
It is much appreciated !
I forgot to mention the Onc had suggested that we move onto AFINATOR as it is a molecular profile suggested TKI
We have recieved the scrip however are not moving forward in anyway shape or form till after the ablation
Debbie

[MartinBube]

Hello Debbie

I'm sure that a center as MSK would offer any kind of solution to Josh. However regarding the liver I was wondering was not the liver a type of organ that can replace removed tissue in some time in a way renewable. for eg. in case you operate a section ( if the met is resectable) in some time the removed tissue will regrow?

Nice to hear the good brain MRI

regards to you and your family

[Jorge]

Debbie,

Thanks for the update. I'm sooo glad to hear the swelling has going down!
The suggested TKI you mentioned is Afinitor, trade name of Everolimus, which was taken by several patients on this community. You can search it. Leila may be the case that ASPS responses to Evernolimus: http://www.cureasps.org/forum/viewtopic.php?f=58&t=509

[D.ap]

Martin and Lynette


Thank you both for your messages.

They are so very caring and I, we thank you for that!

Martin

In reference to your suggestion on surgery per say
When a patient is deemed stage 4, the board of doctors have a different agenda.
Surgery is usually reserved for the curative effect, then for palliative effect as a patient has disseminated cancer.
Josh is in good health as far as his appearance and truly after the two surgeries from Germany. However the surgery would be far more difficult for him to recover from and ablation could have the same end results as the surgery and recovery would be quicker.

Lynette

I think the swelling was from the ablation . I'm with you on the gladness of the disapparence of the swelling
Thanks for the link
I'll sure look it over.

Love to you both
Debbie and family

[Bonni Hess]

Dear Debbie, I am sorry to be slow in responding but we have been on a boat outing for the past week away from the computer. It was so good to return to the very good news of Josh's good and encouraging brain MRI results showing tumor shrinkage and reduced edema, and I share your great joy and relief . I am sorry that there is increased growth of Josh's liver met and that it was not treated when it was first diagnosed a couple of months ago at a smaller size, but am Hopeful that it can still be successfully ablated and that an RFA with a knowledgeable and experienced ablation oncologist can be scheduled as soon as possible. I am personally unfamiliar with any ASPS patients who have been successfully treated with Afinitor, but strongly agree with you that any systemic treatment for Josh should be postponed until Josh's liver met has been ablated because that needs to be the highest and immediate priority before the liver met grows any larger. Is the NIH Cediranib Trial still a consideration/possibility now that Josh's brain mets appear to be shrinking and/or stable? Please give Josh a celebratory High 5 and happy hug from me for his good brain scan results and disippating edema, and have a good and relaxing weekend as you re-energize for the next step in Josh's courageous battle. With special caring thoughts, healing wishes for Josh, much love, and continued Hope, Bonni

[D.ap]

So All

Our Cyberknife appointment was officially today.
The doctor was very professional and very detailed at our visit. Looked at the liver AND lungs and discussed in detail the locations etc

We went in of the opinion that we would attend to make sure we had all options on the table for to treat the liver tumor.
The doctor tried to absorb all our history from the beginning of 2012 till current and had staff that made sure they had all info documented for the boards final review.
We will be submitting to the insurance company. Understanding that we have possible lung tumor treatments on the table seemed to make the doctor ready to advocate on our behalf for the SBRT on our behalf.

The doctor felt once again that systemic treatment to shrink the lung tumors, WHILE WE ARE HEALTHY, was number 1 priority. My mom mind considerd the suggestion. Then we should thinkk about combating the liver tumor with whatever means we choose.

He was of the opinion that if the choosen chemo worked on the lung then the liver would follow as well.
We listened as it was explained, once again , that we needed to focus on controling this ASPS with systemic treatment. It's spread is the issue and treating the loner tumor(s) in the lung is at best ,our next move.

So we will wait as insurance has a response

Love to all
Debbie

[Bonni Hess]

Dear Debbie, Thank you for your thoughtful update. I am confused about the outcome of your Cyberknife appointment and treatment decision for Josh's concerning liver met, but if my interpretation of the information that you shared is correct, it seems that the Cyberknife doctor is advocating postponing liver met treatment for Josh to begin a systemic treatment which I personally strongly disagree with because I think that treatment of Josh's growing liver met should definitely be your first and highest priority instead of dangerously gambling on an unproven systemic treatment shrinking/destroying it. It seems that the doctors inexplicably continue to delay treatment while the liver met continues to grow. When your time allows, please clarify if my interpretation is correct and explain on what basis the doctor is advocating continued delay of liver met treatment. With special caring thoughts and concern, healing wishes for Josh, and continued Hope, Bonni

[D.ap]

Hey all
We aren't giving up on treatment of liver tumor
We are waiting to hear from Dr Tapp and the radiological docs to book a flight to consult on the liver scan

Also from Dr Littrup and his mentored replacement in Detroit

Will let u know when I know
Love to all and thanks for all responses

[D.ap]

Dear all

We have finished our liver ablation in Detroit today and Josh is doing well!
Dr. Aoun feels very confident that the liver tumor was successfully ablated. He was also able to get a biopsy of the tumor so we will have a look see as to what genome profile we have .
The liver part of the body cavity was filled with solution to buffer the skin from burns as the tumor was on the very outside of liver surface.

I will write more as I find out more information.

Love
Debbie

[Olga]

Deb, thank you for an update. Some additional info if you can - was the out of network ablation approved by Josh insurance? Was it done outpatient? Please post Josh experience with Dr.Aoun performing microwave for the big liver met in the new forum I just opened:

http://www.cureasps.org/forum/viewforum.php?f=71
let me know if there are nay technical problems with the forum