Mario from Arkansas - Dx 2007

[cachabamba10]

Hey everyone!!

A lot has happened since last time I updated the board.

I been trying to find a new oncologist and at the same time schedule new cryo treatments for my lungs. Well, all of this never happen because my plans were thrown away by a small lesion in the brain that we found a week ago.

I had brain surgery last week on Friday and I am feeling okay. My head hurts but oh well can't help that.

We still do not have the pathology report back from brain surgery and I see my Neurosurgeon and Oncologist on the 3rd of October.

I know this info doesn't help much but I thought I did share at least this much and once I know more I will let you all know.

Brain surgery really wasn't that bad, I guess it was more scary than actually painful. I was able to walk the same day after surgery which is awesome.

The only info I have right now on the lesion that was taken out is, it was in the left lobe and kind of deep but super small. a couple of mm at the most,it was really hard for them to find. They even schedule me for another surgery thinking that they had somehow miss the lesion but a MRI the next day showed that the lesion was not there anymore.

Well my head hurts a bit I will update more later on.

See ya guys

[Olga]

Mario - thanks a lot for the update, really appreciate it given the circumstances. I hope your headache will go away as the swelling from the surgery will come down.
Lots of questions (when you are able to answer, no rush at all):
- how was it found;
- why did they do the real surgery and not the radiosurgery as most of our people are now having for their small brain mets, and it looks like it was urgently scheduled? 2 mm should not have caused any pain, although there might be exceptions when the location affects something that will give it away at that small size?
Speedy recovery to you!

[Bonni Hess]

Dear Mario,
It was so thoughtful for you to write to update so soon after your last Friday's surgery. I am so sorry to hear about your brain met and surgery, but am grateful that it was found at a small size and was able to be successfully surgically removed. I am sorry too that you are having post-op pain and Hope that it will dissipate and resolve very soon, and that you will have a very speedy recovery.
Like Olga, I am wondering if the very small brain met was found in a routinely scheduled brain MRI, or if you were having symptoms that resulted in the doctors doing a scan? Regarding Olga's question about the reason that resection of the met was done versus Gamma Knife or another type of radiosurgery, I assume that it is because the met was in a resectable location where surgery would not cause or result in any deficits. It is our experience that it is always better to physically remove the tumor if possible since Gamma Knife or radiosurgery are not always successful in completely destroying the met, and the Gamma Knife/radiosurgery procedure itself can cause several months of brain swelling which requires debilitating steroid treatment. Unfortunately many brain mets can't be safely resected without causing some kind of deficits as was the case with Brittany's parietal tumor resection following her failed Gamma Knife treatment. However, surgically removing the parietal tumor involved "going through very expensive real estate" as the neurosurgeon described it, and heartbreakingly resulted in the permanent loss of Brittany's peripheral vision.
Your diagnosis of a brain met at a small and resectable size emphasizes the critical importance of all ASPS patients having routine brain MRI's (at least once a year, and every three months if there have been previous brain mets) to ensure that any brain mets are found at the smallest possible size when they are small enough to be successfully resected or treated with Gamma Knife or radiosurgery, rather than waiting for the met(s) to become symtomatic when they may not be able to be safely surgically removed or successfully shrunk and destroyed with Gamma Knife or radiosurgery.
Your doctors may possibly suggest or encourage you to now or at some point undergo Whole Brain Radiation (WBR) to try to prevent the development of any new brain mets, However I would personally advise and warn against this unproven treatment because based on my knowledge and personal observations of those ASPS patients who I know underwent WBR treatment, it was tragically unsuccessful in preventing new brain mets probably since ASPS is notoriously radiation resistant and WBR cannot safely deliver large enough amounts of radiation without damaging brain tissue, unlike Gamma Knife or radiosurgery which can focus a large amount of radiation directly on the tumor being targeted and treated thus sparing damage to the surrounding brain tissue. Also, WBR can cause severe and permanent short term memory loss. Unfortunately, Brittany's and other ASPS patients' experience has shown that you may eventually develop more brain mets that are currently too small to show up on a scan, so once you have recovered from your surgery, I strongly encourage you to aggressively research, network and communicate with other ASPS patients who may have experience with brain mets, and discuss with your doctors the best treatment approach now that you have had one brain met. At this point, it seems that vigilant scanning with a brain MRI every three months and resection/treatment of any new mets, or a systemic treatment, like Cediranib or Pazopanib, that can cross the blood brain barriar to try to prevent new mets are the best treatment approaches once you have developed brain mets.
As always dear Mario, I am here to try to help you in any way that I can with shared researched and anecdotal treatment information, and I am holding you very close in my heart and my most caring thoughts.
Reaching out to embrace you with gentle hugs, deepest caring, positive thoughts, healing wishes, and continued Hope,
Bonni

[cachabamba10]

Hey everyone!!

Well, my head doesn't hurt as much now I am 15 days past surgery AWESOME.

Okay, I have super good news and this is really weird too. Info on the "tumor",it was in the left parietal region 2 cm under the cortex.It measure 3x6mm. The tumor was found via my yearly brain MRI. After the tumor was found surgery was schedule two days after the MRI. Before surgery, they did the stealth Brain MRI which again show the tumor. I then had surgery which was done by Chief of Surgery at LeBonheur Children's Hospital, Frederick Boop,MD.

He took out what look like abnormal tissue to them, but in the dictation it describes how they could not find a tumor at all.He had to used the probe to see if they were off by some mm. In the end they took "abnormal tissue" and close me up.

Dr. Boop schedule me for another surgery the next day thinking that he had somehow miss the tumor. Pathology wasn't able to give a diagnosis at hand also.

Next day, In the morning I had a MRI schedule and surprise surprise no Lesion or tumor found in my brain. Surgery was call off. I was sent home the next day.

I stayed home for a week and then saw Dr. Boop he took the 14 staples of which did not hurt at all, and to my surprise and everyone else pathology came back negative. the actual result was No tumor cells identified,Normal Cerebral Cortex and No Metastatic neoplasm or inflammation identified.

So super awesome, no ASPS in my brain!!!!!!!!!!!!!!!!!

I am super happy and so is my family. Dr. Spunt says that this has never happen in her whole career as a oncologist and Dr. Boop say the same thing.

The type of surgery I had was a Left Parietal Stealth Frameless Stereotactic craniotomy and microsurgical tumor resection, intraoperative ultrasound.

Sincerely:
Mario

[Olga]

Hi Mario, that's a very puzzling story indeed! Did they say if they are going to have the follow up control MRI earlier than the next year's yearly brain MRI?

[Bonni Hess]

Dear Mario,
This is truly wonderful news , but also very strange and perplexing as to how this kind of mistake could have possibly been made! I am so sorry that you had to undergo an unnecessary brain surgery and all of the pain, suffering, stress, worry, and anguish associated with the whole situation . If the "abnormal tissue" was not a tumor, what did the oncologist and pathologist determine that it was, and will you now be scheduled for a follow-up brain MRI prior to your annual one to confirm the accuracy of the pathology results and to ensure that there is no more "abnormal tissue"? If the mistake had been made as the result of a brain PET CT scan I could better understand it as PET scans are notoriously unreliable as happened when a brain PET CT showed possible tumor reoccurrence in the resected tumor bed in Brittany's parietal lobe and she consequently underwent an interstitial thermal therapy surgery which thankfully showed no tumor reoccurrence, but it too was an unnecessary surgery. In the case of the PET CT it showed increased sugar uptake which can be an indication of tumor activity, but in Brittany's case it was due to post-surgical inflammation. Had we followed her radiation oncologist's advice based on the errorneously suspected tumor reoccurrence, Brittany would have unnecessarily undergone Whole Brain Radiation (WBR), and tragically would have probably suffered permanent short term memory loss. As frustrating as it was that she had to undergo an unnecessary surgical procedure, we are very grateful that we declined the WBR based on our research and anecdotal knowledge about the failure of WBR to be successful in destroying and preventing ASPS brain mets. I am grateful that you did not suffer any deficits as the result of your unnecessary surgery, and I Hope that you will continue to have a good recovery.
Take care Mario, and please keep the Board updated on your situation as you are able.
Reaching out to embrace you with happy hugs and sharing your good news with great happiness, relief, and continued Hope,
Bonni

[DottyW]

Mario,
That's great news. Sounds like a God thing to me.
Dotty

[cachabamba10]

Hello:

I am officially a MD Anderson patient. My new oncologist name is Robert Benjamin. He is really old. I think that my complete experience here has been good. I just think that it will take a while for me to get use to my new medical team. They are awesome and caring but I think I miss St. Jude's.

Lungs are getting worse, not super bad but they are reaching a point of no return. By that I mean, no surgery possible, I am talking about my left lung. My right lung is doing better in a way. The usual 20 or so tumors have some grown and others stay stable. The danger is that now the bigger ones are getting really close to 30mm or 40mm. That is scary to me. Once you get to that size, your options are very limited.

GOOD NEWS, my brain is clear, and this is just AWESOME GUYS. Dotty I really do think you are right,I believe a miracle happen.

I will start Voltrient in a week or two, I already picked it up from the pharmacy. I will start at 400mg and then build up to 1000 mg.

I will start posting on the Voltrient thread.

Mario

[Olga]

Mario, thanks for the update. MDACC sarcoma oncologist Dr.Benjamin is one of the most experienced sarcoma oncologists. I hope the pazopanib (Voltrient) is going to shrink the lung mets.
How many mets in your left lung are now close to 30mm or 40mm?

[Ivan]

Mario, have you considered ablating the biggest ones before starting the trial? Seriously, that would at least buy you more time.

[Bonni Hess]

Dear Mario,
Thank you for your thoughtful update. It is so good to hear from you again . I share your great joy and relief that your brain scan is clear which is wonderful news, but I am so sorry that you are having increased growth of your lung mets. I am perplexed as to how the doctors allowed the lung mets to get so large without some type of interventional treatment like Cryo or resection if the mets were being regularly monitored with CT scans.
Dr. Benjamin is, as Olga has said, a very experienced and well known Sarcoma oncologist and specialist who is highly regarded. When Brittany was first diagnosed and we contacted MD Anderson for a second opinion, we talked with Dr. Benjamin on the phone and he stressed to us the importance of Brittany having a brain MRI immediately. He also wisely told us that a brain CT was not adequate to detect ASPS brain mets at their smallest most treatable size. Thankfully at that time she did not have any brain mets yet, at least that were visible on the MRI.
I agree with Ivan that it might be best to explore having the largest most concerning lung mets Cryoablated, if that is a possibility, prior to beginning the Pazopanib (Votrient). Also, I follow a young woman on Facebook and Caring Bridge who is also an ASPS patient at MD Anderson, but unfortunately she does not participate or post on this Board. She is currently on a combination Pazopanib/Verinostat Clinical Trial at MD Anderson and has now had 15 months of disease stability and shrinkage of her spinal tumor and lung mets since beginning the Trial in October 2011. This appears to be an effective treatment for her thus far, and perhaps the combination of the two drugs is more effective than Pazopanib alone so I am wondering if the option of this Trial was discussed with you. If not it might be worth asking Dr. Benjamin about it. I am concerned about the possible toxicity and severe side effects of 1000 mg. of Pazopanib per day since this is significantly higher than the usual dosage regimen of between 400-800 mg. per day. Did Dr. Benjamin tell you if any other Pazopanib patients have been able to tolerate this high of a dosage, and if so, if it seemed to be more effective than the lower doses?
My very best wishes and most positive thoughts are with you Mario for a VERY successful response to your Pazopanib (Votrient) treatment and I will be anxiously awaiting your next update. Your updates in the Pazopanib/Votrient thread will be deeply appreciated by all of us who are closely following this very promising new drug.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni

[cachabamba10]

Thanks for the posts Olga,Ivan and Bonni,let me answer them.

Olga, they are about 3 to 4 I would say its hard to tell because apparently 2 were kind of stuck together and they were small but now they have formed some kind of "conglomerate" of about 4 little one plus the two. This is probably the most dangerous spot.

Ivan, I have not contacted Dr. Littrup but I will talked with him before the start of the chemo. I have spoken with Dr. Rolle and Dr. Rau, both are amazing thoracic surgeons. The problem is with the location and damage that will be done. Dr. Littrup has not yet given me his opinion but I will wait till he does.

bonni, I talked to Dr. Benjamin about the clinical trial because I thought that Voltrient was going to be super expensive. Dr. Benjamin believes that 400mg of Voltrient is not good enough. He has several patients who are having a good outcome with between 600 to 800mg. He believes that by mixing the TKI with another drug you are weakening the main killing agent being Voltrient. I understand his thinking but I also believe in the value between a TKI and another agent to kill the tumor from many angles. I am going to try Voltrient alone first and see how it goes.

Well, I really do hope that Dr. LIttrup might have good news for me next week. But, taking into consideration what both thoracic surgeons have said I doubt it,but one can always hope for the best.

Thanks Olga,Bonni and Ivan

sincerely;
Mario

[Olga]

Mario, as I understand Dr.Littrup is out of the office till Monday. You can also consult with Dr.Okunieff re. radiosurgery Novalis to treat this:
http://www.health.ufl.edu/about_the_hsc ... us=APP,REN
Also I have to point out that if you start the pazopanib alone first you most probably will not eligible for a clinical trial with the pazopanib/any other TKI agents. On the other hand if Dr.Benjamin already seen good responses at the doses higher than the trial it may be makes a sense because being off the trial has its own advantages - you are not limited by the trial rules. For example when on a trial: if there is a progression in 1-2 mets while the stability or regression in the rest of the mets, they can simply take you off the trial - but it is already known that there might be a heterogeneity in response of the mets to TKI as some of them have slightly different make up then the rest. If the patient is not on a trial, he can take a time off the drug and have the progressing mets removed or ablated and later patient continue with the TKI.

[Feng zhou]

Yes, to participate in clinical trials the biggest disadvantage is , most clinical trials are the dose climbing test. according to draw lots to decide patient into which group. For example: pazopanib+SAHA clinical trials. Starting doses: Pazopanib 400 mg orally daily and Vorinostat 100 mg orally daily. I consulted MD. Anderson Dr.FU (Principal Investigator: Siqing Fu, MD,PHD). he told me if you buy drugs, dosage should start from the Pazopanib 600 mg orally daily and Vorinostat 200 mg orally daily at least.
Regards pazopanib price, we buy GSK pazopanib in Hongkong $1300 ( 200mg, 30 tablets ), and buy GSK pazopanib in India pharmacy $30 ( 200mg, 30 tablets ).I used to do drugs NMR, HPLC comparison, two drugs did not differ in composition, content.
Mario, you have stopped cediranib, sutent for more than 1 years, except pulmonary lesions progressed, other parts of the body have no new mets. now again with
TKI, really need to consider carefully. Side effects of TKI you know, too uncomfortable! Can not but not to, not on.
The ASPS is not sensitive to the photon, but sensitive to the proton, neutron. In addition to cryoablation, neutron, Novalis, If you can consult MD Anderson pencil beam proton therapy?

[Bonni Hess]

Dear Mario,
It has been several weeks since you last posted and were awaiting a response and opinion from Dr. Littrup regarding the possibility of Cryoablating your largest and most concerning lung mets. I am wondering if you received a response from him yet, and if so, what decision was made? Also, I am wondering if you have started taking your Pazopanib yet? Olga has now opened a Pazopanib topic on the Board here:
Board index ‹ Systemic Treatment ‹ TKI ‹ Pazopanib

http://www.cureasps.org/forum/viewforum.php?f=63

so I am Hoping that you and other ASPS Pazopanib patients will share your Pazopanib treatment experiences and results there as you are able. There is currently very limited anecdotal information available about this promising new FDA approved drug, and I know that it would be deeply appreciated by everyone in the ASPS Community who are closely following it if those ASPS patients who are/or have taken Pazopanib would share their information so that we can all learn from it. Take care Mario, know that my very best wishes and most positive thoughts are with you, and keep in touch.
With special caring thoughts, healing wishes, and continued Hope,
Bonni