D.ap wrote:Ps
We are all holding out for the unknown reading on the scan as a vessel and holding tight to that belief
Thanks Debbie.
Sorry for my late reply to your previous questions:
George is feeling much better with the headache. Now I think the headache in mid-Oct is the side effect from the Gama Knife done in Aug. As to the Gama Knife doctor, the mets began to necrosis at least one month later.
The TKI was discontinued ~2 weeks before and after the 2 laser surgeries. He discontinued Pazopanib 2 weeks when he restarted it 10 days after the second surgery in mid-Oct because it didn't work to prevent new brain mets from emerging and it affected wound healing. He has nothing now.
Yes, the doctor prescribed a week of steroids.
"So good to hear from you. How is George feeling after his procedure ? How are his headaches?
I hope the swelling is going down
So as I understand it George has had 4 different incidents with brain mets since last September ?
You guys have discontinued TKIs at this time ?
When you have gamma knife surgery do the doctors prescribe steroids after wards ? "
Good to hear from you
I know you've been incredibly busy and I knew you would write when you could
Please don't ever feel like you need to apologize for not writing
Hope Jorge is feeling better and gaining strength
I don't know how to start. Have you ever seen similar case that mets only grow in the brain? There is progression in the brain in the MRI in Jan 22. The oldest met which was treated by Gama Knife twice before show huge progression. We were looking for neurosurgery but the Chinese New Year is coming, everyone is going home. Can't find a proper hospital to do the surgery, we were told to go home until post-holiday.
The lung is clear, the liver & abdomen is clear, why the growing in the brain can't stop? It's very horrifying to die for the brain mets.
Anything we can do?
Lynette, I am very sorry to hear that, but since lungs are clear after Dr.Rolle's surgeries, and the liver & abdomen are still clear, George definitely has all right to have his brain met resected. How big it is now? it is a relatively easy question to answer as why it is growing while everything else not - it is obvious now that the initial treatment was incomplete and after awhile the blood feeding system has recovered and now it is more vascular than before and the tumor has regrown, it is not a systemic progression and other tumors have nothing to do with this local failure. He has all chances to be well if it is resected soon. How soon would be the next available date for the surgery at the good quality place?
Is George given steroids for now?
Ivan's brain surgeon here in Vancouver Dr.Toyota is excellent but it is probably to expensive to go here, besides it might not be faster than in China? Anyways, this is his contact info just in case: http://surgery.med.ubc.ca/people/btoyota/
Dear Lynette,
I am so sorry that George's previously twice Gamma Knifed brain met is continuing to grow. This could be due to the size of the tumor at the time that it was initially Gamma Knifed as our experience with Brittany and our knowledge of other patients who have had Gamma Knife indicates that ASPS brain mets larger than one Cm. unfortunately don't usually have a successful response to the Gamma Knife. I am grateful that surgical removal of the tumor appears to be an option and am Hopeful that the surgery can be scheduled as soon as possible to prevent the tumor from growing any larger and posing a risk of becoming too large to safely/successfully resect, causing damage to the brain, or causing debilitating symptoms of severe headache, nausea, loss of balance, numbness of the extremities, and/or seizures as the result of brain swelling from the tumor. Hopefully the doctors will recognize the urgency of the situation with the rapid increase in the size of the tumor and will schedule and move forward with the surgery immediately rather than postponing it until post-holiday. I am grateful that George's chest and abdomen are clear of mets, and Hope that soon his brain will be also. Take care dear Lynette and keep the Board updated as you are able.
With special caring thoughts, healing wishes for George, and continued Hope,
Bonni
I realize we are all grasping for straws or guessing what is happenig with the tumors of George's as they are appearing to grow
.
Blood work, as I asked about earlier, can be performed and tell you about possible infection or inflamation as I am sure you know.
I am hoping it has something to do with inflamation. However if there would be surgery scheduled it would definently tell you both what it truely is that is causing the growth.
Thank you--Olga, Bonnie and Debbie for helping me to understand the problem and your kind comforts.
We heard so much despair in those days and since last year. The doctors said it's just a waste of money and time to make the effort since the cancer has metastasized to the brain. But how can we give up on such a kind, optimistic, positive and energetic young man?
Olga,
Your explanation of the progression of the biggest met is very reasonable and give us the confidence to fight with this disease again. I think about it and think about it, but just can't figure out the reason. I thought maybe it's time...
But there may be a new brain met of about 4mm in the MRI from Jan 22. Can you please help to explain this?
The biggest met is 3.7*2.9*2.9cm in the report. George is prescribed dexamethasone & furosemidum to relieve the swelling and Depakin to prevent seizures. Going to Canada or any other country needs to apply a visa which is not applicable now as almost everyone is on vacation now, and it's too expensive. Thank you so much for providing the contact of Dr. Toyota.
Bonnie,
Now I can't agree with your more on "ASPS brain mets larger than one Cm. unfortunately don't usually have a successful response to the Gamma Knife." Fortunately our original strategy corresponding to it--to inspect frequently to find any mets when they're small so that can be treated by Gama Knife successfully.
Thanks for sharing your experience--it is always so right and invaluable. I have the same concerns as you "prevent the tumor from growing any larger and posing a risk of becoming too large to safely/successfully resect, causing damage to the brain, or causing debilitating symptoms of severe headache, nausea, loss of balance, numbness of the extremities, and/or seizures as the result of brain swelling from the tumor" I went to another city for a better doctor and hospital the next day of the MRI. George was admitted in the hospital on Jan 23 and the neurosurgery was scheduled on Jan 26. But the routine X-Ray of the chest reported pneumonia by mistake (it was the scar from the laser surgery actually). When the mistake was clarified by the thoracic surgery department, it's too late to schedule it again before the holiday.
Fortunately, George didn't feel much headache or other symptoms of brain mets.
Debbie,
George was in the hospital and prepared for the surgery, so routine blood work was performed. The doctor didn't talk about any abnormal about it, so I guess it's okay.
Let's wait and see the pathology report on the met once it's resected.
Again, I don't know how to thank you guys. I was so confusing and desperate without your help and comforts.
Lynette, there are of course can be both - the recurrence of the previously treated met and the new one can start to grow from the previously dormant sarcoma cell that was spread from the primary tumor a long time ago and just sat there, sleeping. Remind us, how many brain mets did George have so far?
We (me and Ivan) have a feeling that when there is a bigger untreated active tumor in the body, it eventually creates the conditions for other mets to grow. It looks like the met is surgically accessible and I hope that George will get it resected soon.
I absolutely hate holidays, because sarcoma does not take holidays or vacations and is just waiting to get its chance to escape the control.
Debbie,
As you can see from George's experience, the mets grow really fast in the brain. The brain is the top important organ of the body. If the brain mets are big, they're life thretening. George lost the eyesight of one eye, and has very narrow visual filed with the relative good (0.6) eye--that's the side effect of the Gama Knife.
So everyone should react very quickly if a brain met is detected.
Olga,
Usually, I don't hate holidays. But this holiday we have, is very nevous and anxious...
The theory you told is what I always use to comfort/encourage George and myself, to give us the hope. I learnt this theory from you somewhere in the Community. Your wide range of knowledge help so many peopel.
The qty of the mets treated by Gama Knife is 2+2+2+6=12, and now 1 suspicious (name it A, ~4mm) and 1 can confirmed (name it B, <1cm) now. Some small ones treated before were absorbed so now there are about 9 mets in the brain. The ones need to take care are Met A, Met B & the 2 oldest one (they were ~2cm before treated) which were treated by Gama Knife (Met C shows huge progress, the other one Met D shows slight progress ).
Met C the biggest one locates in the right frontal lobe, Met B in the left frontal lobe. The plan discussed with the neurosurgeon is to remove them at the same surgery.
Met A can be treated by Gama Knife easily after the nerosurgery.
Met D in left occipital lobe (optic nerve) can be treated by Gama Knife the same time as Met A. But considering Gama Knife can't solve the problem for good. I need to discuss it with the neurosurgeon and Gama knife doctor for a plan that can solve the problem without damage his poor eyesight.
Hope this day finds you closer to finding answers.
Has the swelling come down quite a bit or will that be resolved during the surgery ?
Could it be that the reported mets are swelled up areas or is that hoping for much?
I am thinking of you all today and wishing you the best!
Debbie - it is a New Years eve/day in China today...everyone is on holidays. Happy New Year guys and I hope it brings much needed medical help for George soon.
Dear Lynette,
I Hope that you and George are finding a way to take a break from ASPS for today to enjoy the Chinese New Year celebration despite the difficult issues and concerns that you are facing. I am so sorry for all that George and you have been through with him having been diagnosed with a total of 12 brain mets, but you are to be commended and admired for your very pro-active and determined approach to treating them. I am Hoping that George's resectable mets can be removed as soon as surgery can be scheduled, and then once he is recovered from the surgery he can begin some type of systemic treatment with a tyrosine kinase inhibitor (TKI) like Cediranib, Pazopanib, or Cabozantanib (Cometriq) to try to prevent the development of any new brain mets since TKI drugs are thought to be able to cross the blood brain barriar. Please take care, give yourself and George special hugs from me, have a good Chinese New Year, and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes for George, and continued Hope,
Bonni
Hello my friends,
I'm very glad to update that George had a very sucessful surgery last Thuesday with the 2 frontal lobe mets resected! We're also very surprised by the recovery. This surgery is much easier than the thoracotomy for George. He could get up and walk after the drainage tube was removed 3 days after the surgery. He feels like normal today!
Bonnie,
We're also considering taking some TKI. As you know, new mets kept appearing when he was taking Cediranib, Pazopanib (+sirolimus) and I've seen a ASPS patient here progressed to the brain when Sutent worked for her. So what left to me is Cabozantanib only.
I'm also thinking about BKM120. Some Renal Cell Cancer patients take it and it works to shrink the brain mets. Have you seen any ASPS patients using this drug?
