Josh wrote: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
