Josh from Kansas - Dx Sep 2012

[D.ap]

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

1)

was the out of network ablation approved by Josh insurance

I believe the referral was submitted and is in the work

2)

Was it done outpatient?

Yes however Josh spent the night and was looked over. My response--whew He needed anti nausea med on as requested.

3)

Please post Josh experience with Dr.Aoun performing microwave for the big liver met in the new forum I just opened:

The communication and concern and IMMEDIATE response to the kids has been amazing ! We will post more after the kids rest tonight.

Josh is out of facility and hoping to fly home soon.

We need to make sure follow up doctor appointments are secured ASAP to monitor signs and levels of blood serum I believe?
Will provide a post in liver treatment I believe Olga?

Thanks for the prayer support It is felt across the miles .

Love
Debbie and Family

[Olga]

I actually opened the new sub-forum in the ablation forum, here viewforum.php?f=71
but probably it makes sense to copy it to the liver mets treatment?
Josh will need to ask for the procedure report+ post ablation scanning schedule recommendations from Dr.Aoun, to bring it to the oncologist so the post ablation MRI could be scheduled - I think in 3 months?

[D.ap]

Hello all

Kids home yesterday and damn glad to be home!
Josh ran out of pain killers prior to flight and you all know the rules as perscribed pain killers are regulated

His night was less than relaxing however we are on the righ track.

Incisions look good but he feels bloated..and pain.

Will continue with input on personnel and liver ablation as info collected.

Love to all
Debbie

[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

Hi all

Josh is feeling better with each day that has passed since July 22. I feel in my heart and soul it is a result of all the prayers from our friends and family that have carried us and made this happen. Thank you all.

Tomorrow we are going for appointment with neuro surgeon after performing a brain MRI last Saturday. Josh and his wife got a call Mondayish that the brain tumor continues to shrink! Another prayer answered.
I will update tomorrow on hopefully the brain and liver progress plus more specifics .
Good night to all

Love
Debbie and family

[D.ap]

Hi All

Our appointment with the neuro surgeon still showed some edema around the ablated tumor but a 2mm shrinkage from June. We are now 4 month post ablation and other than the seizure in May Josh feel very well. Dr. Chamoun wants Josh to continue on 2mg of dexamethasone for 3 more months unless he truly wants to start to get off of it. The schedule after that would be 1 for 4 weeks then 1/2 for 4 weeks and then off completely.

As for the liver Josh is managing the pain with ibuprofen. He will have an extended CT scan around the last week in August to check progress of the microwave ablation.

We pray all is well with everyone.

Much Love
Debbie and family

[Olga]

Debbie, I am very happy to hear that Josh condition continues to improve. Can he now look at the possible treatment of the most concerning lungs mets and on the possible participation in the cediranib trial?

[D.ap]

Olga

Thanks for the note
I don't quite understand it but the kids somehow think they are disqualified from the trial as a result of
A) not being out of the woods of brain tumor progression?
B) being on steroids ?
Yes we are very happy with Joshuas over all good health today.
Love
Deb

[D.ap]

Hello all

We've recently had an extended CT scan and as was predicted the tumor has increased.
I believe that another follow-up scan will happen in 3 months but I will let you know soon what I find out.

Love to all
Debbie

link to liver treatment


http://pubs.rsna.org/doi/full/10.1148/r ... g01oc08s41
http://www.cureasps.org/forum/viewtopic.php?f=41&t=1127

[Bonni Hess]

Dear Debbie,
It is so good to receive an update from you, but I am so sorry that Josh's extended CT showed increased growth of the tumor. Can you please clarify if the scan was done of the liver, of the lungs, or both, and why you said that it was" predicted that the tumor has increased" since it seems that the doctors would be expecting the tumor to shrink rather than increase in size following the microwave ablation for the suspected liver met. In earlier posts you had referred to Josh's ablation as a "microwave ablation". Is that the same as radiofrequency ablation or a different type of ablation? Also, if the tumor has increased in size, I don't understand why the doctors are waiting three months for another followup scan when it seems that the growing tumor should be addressed and treated as soon as possible.
I Hope that Josh is feeling good and is now completely weaned off of the steroids for his brain inflammation. Are there any current plans for any kind of treatment for his lung mets, or a systemic treatment to try to shrink his mets and stabilize the progression of his disease? What is the status of his previously planned Cediranib Trial participation?
Please know that Josh, you, and your family are always held very close in my heart and my most caring thoughts. Take care dear Debbie and keep the Board updated on Josh's situation as you are able.
With special hugs, healing wishes for Josh, much love, and continued Hope,
Bonni

[Olga]

Deb, when was the liver ablation done - i.e. how log was the interval between the ablation and the post ablation scan? Ablated zone is bigger than the metastasis by at least 10-15 mm margins so yes, it is expected to appear bigger as the created necrotic mass is bigger than the metastasis, but as the time goes the scar that is left, starts to heal and shrink. Sometimes it stays stable but usually it is slowly getting smaller - i.e. the first post ablation scan usually shows the increase comp. to baseline but the second has to show decrease comp. to the first one (although sometimes there is no change).

[D.ap]

Olga

July 22 was the procedure.
Bonni you are correct in the procedure being microwave.
The focus was on the liver for the scan however I will post when I receive a copy of the scan.
Josh truly needs to be out of the woods with his brain tumors I believe to be considered for the trial.

Thanks for your kind words . Both of you

Love
Debbie

[D.ap]

Good morning all

Josh and His wife just came back from Memorial Sloan Kettering during the east coast historically reported 2016 blizzard. They made it there and back safely.
Josh started sutent in September and continued til November, late to take it. His debilitating cough caused his doctor to DQ it as he really was having a hard time ignoring and controlling it the whole time. His weight dropped from 130 to 114 .
Morphine helped with the pain and prescription cough syrup helped some during the night but in the end it was decided to discontinue to understand the cause.

Today he is virtually free of the cough but still is taking morphine for lung pains.

Scans show stable lung tumors and the liver and brain mets continue to shrink from the microwave ablation and the SRS plus LITT to the left side large brain tumor.

Joshua's largest lung tumor is ,to me, a result of the laser procedure in Germany plus satellite growth to make a grand total of over 4cm long on the left lung. If my memory serves me correctly the left lower lobe tumor almost have to be sectioned rather than laser removed

We are in the process of moving to another TKI but before that we have on our schedule , going to a nutritionist to get some weight on that boy, as I understand it . I plan to attend the next doctors appointment to get more up to speed info on Joshua's care.

Any input or questions welcome

Love to you all
Debbie

[Bonni Hess]

Dear Debbie,
Thank you for the thoughtful update on Josh. I am so grateful that his most recent scans show stable lung mets and continued shrinkage of his treated brain and liver mets . Are there any plans to pursue Cryoablation of his largest most concerning lung met(s) since 4 Cm. is pushing the limit (we were told by Dr. Littrup that 3 Cm. is the maximum) for a successful Cryo of lung mets, and may unfortunately already be too large for that treatment option? I agree that Josh definitely needs to increase his weight prior to beginning another TKI systemic treatment such as Cediranib which can cause weight loss. Marijuana is an excellent appetite stimulant which may be helpful if he has not already considered/used it to promote weight gain and reduce nausea. Are his doctors at MSK addressing his concerning weight loss and low weight, and if so, what are their suggestions? In addition to pursuing another TKI treatment, has a PDL-1 immunotherapy type treatment been considered and explored? Since he was only on Sutent for about two months I would think that it is difficult to determine if the Sutent was having any effect on stabilizing the progression of his disease unless he experienced a significant increase in the size/number of his lung mets and/or any new mets in his body during that relatively short two month time period. I will be anxiously awaiting your next post with updated information following his next doctor appointment, and in the meantime am continuing to hold dear Josh and your family very close in my heart and my most caring thoughts.
With deepest caring, healing wishes for Josh, much love, and continued Hope,
Bonni

[D.ap]

Hello all
After many MRI's and the passing of time since October of 2014 we are faced with yet another set of brain tumors
We will once again attack not both but 1 of them with 3 doses of 10gray units
The other will be kept in check
It wasn't measured and was barely noted in report
We are checking into the PD1 trials beginning with a visit to oncologist at KU Med tomorrow

Prayers requested
Love
Debbie

[Bonni Hess]

Dear Debbie, I am so deeply sorry for dear Josh's diagnosis of two new brain mets, but am grateful that they were found at small treatable sizes due to your pro-active vigilant scanning. I am wondering why resection of the tumor or a single Gamma Knife treatment isn't being used instead of the planned 3 separate doses of 10 gray radiation which may not be as effective? I am also wondering what happened to the previous plans for Josh to begin the Cediranib Trial at NIH, and if there is any evidence that the PDL-1 drug has been shown to be able to cross the blood brain barrier to prevent the development of new brain mets which will be a critically important factor for Josh with his history of brain mets. Please know that my aching heart, most caring thoughts, all my love, healing wishes, and continued Hope are with dear Josh, Meg, you, and your family as you face this new challenge in Josh's courageous ASPS battle, Bonni