Brian from VA - Dx June 2012

[BrianB]

Hello, everyone. While I knew I would be silent for a bit after surgery, I had not predicted it would take this long to get back to writing about my ASPS. I guess that after talking and thinking non-stop about ASPS for the nine months leading up to surgery, I was just ready to not think about the disease. Plus the rehab (and that pesky thing called work) kept me fairly pre-occupied.

After six blissful months of getting to believe I was cancer free, realty intruded on my last trip to MD Anderson: a few very small (2 to 3 mm) mets were found in my lungs. Obviously, the news was not welcome; however, the results did not seem nearly as crushing as the initial diagnosis. In part, I believe that is because you have all shared so much of your stories, which have shown that lung mets are not a death sentence (thank you!). I also believe that God has used this damnable disease to gift me with a new perspective on life. People kept telling me that cancer would allow me to truly be able to embrace the day (... having no other choice but to accept the present), but I had not expected how freeing that gift would be.

I head back to MD Anderson in a few weeks to monitor the lungs and to figure out if we can do anything in the short-term to fight them (right now, we are just monitoring them). I will try to be more prompt with future postings.

Thanks again for the gift of your stories.

Happy Thanksgiving!

Brian

[D.ap]

Brian
Thanks for the update. I am really sorry to hear of the lung scan
I was wondering what other scans you've had? They are a necessary evil
Were the doctors able to remove all 3 tumors with surgery ?
We all understand that life happens

Happy thanksgiving to you and yours too
Debbie

[Amanda]

Hello Brian

I told my onc that though it sounded odd that i am in some ways thankful i got this i see life different an i am actually living it now! dont get me wrong i hate it but i did receive a gift!
He told me many cancer patients have told him the same thing Welcome to club awake <3

No a few mm mets are not a death sentence an i would suggest ONLY surgery and to think it all clearly thru and be active here before making decisions.. do not chemo please! I dont care what they say... My body has kept 13 mets stable for about four years and now two have gown an i will get them removed soon! they are so slow an in this we are as cancer patients blessed!

Please, no chemo!
Stay active and talk to everyone here an lets all make a group of educated an loving people! It is what i did an pease read a lil of my story and Ivans...

I am off to get the stuff for the holiday tomorrow <3 be happy that its only a few it is all how you look at it an your prospective that make a difference

Read my signature its true! <3

[BrianB]

Sorry to have gone quiet for so long. It has been 27 months since my initial diagnosis and 20 months since resection of my primary tumor (in my butt/hip).

After six months of chemo (Sutent) and a heavy dose of radiation, I had the primary tumors resected in March 2013. The resection was done by Dr. Healey at Memorial Sloane Kettering and I have had no issues with recurrence in that spot. Unfortunately, the process of healing from surgery was not kind to my body, and I have just had my second hip replacement -- hoping this one sticks. I raise this point, because it may have been the chemo and radiation that caused me to have had such a hard time healing after surgery (something to think about, as I was almost universally guided to do radiation prior to resection). That said, it is also possible that the chemo and radiation are partly responsible for the lack of recurrence in the area. Unfortunately, neither I nor the doctors know what caused what.

Over the past year, I developed a tumor on my adrenal gland that was growing faster than the doctors wanted, so I had it removed at NIH in Bethesda, MD in June 2014. So far, no recurrence in that spot.

Finally, while the many mets in my lung have generally grown at a very slow rate over the past year, one is now growing faster than the doctor would like (going from 7mm X 4 mm to 11 mm x 7 mm in the last three months). As such, we are exploring options to kill it. Unfortunately, it is in part of the lung near the heart and the diaphragm, so we are searching for good options to kill the met. Any suggestions?

Hope all is well,
Brian

[D.ap]

Hi Bryan
Good to hear from you.
So the tumor is in the lower left lung center ?
What does your oncologist say ?
All our love to our fellow warrior fighting the fight

Debbie

[Olga]

Hi Brian, thank you for an update. It was a huge surgery you had. Regarding the growing lung met. Ivan had the faster growing met in the same part of the lung near the heart and the diaphragm - I suspect the mets grow faster when there is an abundant blood supply nearby, and it is better to stop them as soon as possible. He had this met successfully cryoablated by Dr.Littrup in Detroit, it is a low traumatic procedure and Dr.Littrup is the top doctor in this area of expertise. He will review your scan long distance and give you his opinion if the met could/should be ablated. More info could be found here:
http://www.cureasps.org/forum/viewforum.php?f=55
good luck,
Olga.

[Bonni Hess]

Dear Brian,
Thank you for your update. It was so good to hear from you after your long absence from the Board, and I am grateful for the successful resection of your primary tumor and the adrenal gland tumor, but I am so sorry for all of the challenges you have been through since your diagnosis and your primary tumor surgery, and for your fast growing and difficultly located lung met. It sounds like you and your doctors have been very pro-active in monitoring your disease and addressing and treating any new mets or concerning increased growth, which is so critically important in fighting this disease. I agree with Olga's recommendation for you to explore Cryoablation of the concerning lung met with Dr. Littrup in Detroit at Karmanos Cancer Institute, and I strongly encourage you to pursue this possible treatment option immediately in order to have the met ablated as soon as possible before it grows any larger and to ensure the best chance of a successful ablation of the met. I Hope that you are receiving regular and complete scans including chest/abdominal/pelvic scans every 3-6 months and a brain MRI and full body bone scan at least once a year as it is essential to monitor all areas of the body with the correct type of scans with this unpredictable disease. Take care Brian, keep the Board updated on your treatment decision for your concerning lung met, and know that you are being held very close in my most caring thoughts.
With special caring, healing wishes, warm friendship, and continued Hope,
Bonni

[BrianB]

Thank you for the recommendation of Dr. Littrup. I will start to research his treatment and technique and see what my doctor (Dr. Tap, Med Onc at Sloane Kettering) has to offer after he speaks with his team of experts. Thank you. I will keep you posted.

[Olga]

I am pretty sure that there is a similar specialty dr St the MSK but Dr.Littrup is the top one and he has done the locations other doctors won't even try (which is a good thing when dr is able to recognize his limits and leave the field for an expert). Dr.Littrup was one of the first drs to use this cryo tool long time ago and is a leading developing dr with the company producing this tool.

[D.ap]

Thank you for the recommendation of Dr. Littrup. I will start to research his treatment and technique and see what my doctor (Dr. Tap, Med Onc at Sloane Kettering) has to offer after he speaks with his team of experts. Thank you. I will keep you posted.

Hey Brian,

At the very least I would send Dr Littrup, if he agrees, your latest CT scan.
Call his office and ask his co-worker as Olga has that information.

http://www.cureasps.org/forum/viewtopic.php?f=55&t=835

Maybe the tumor is located in a different area to major veins etc but Ivan and Olga have been there done that
PM Olga


Love
Debbie and family

[BrianB]

Update: I was scheduled to have minimally invasive surgery to remove the lung met near the heart/diaphram at the NIH NCI, but that has been put on hold; I was informed last week that pre-surgical testing revealed three brain mets (two are less than two mm and one is one cm). I am now in the process of trying to get these radiated/removed -- still waiting on NIH and Sloane Kettering to give their opinions. I have been reading the board and it seems like lots of folks have battled brain mets successfully, so I am hopeful. Still, its not fun to have alien invaders growing in your brain. Anything I should be thinking about?

[Olga]

Hi Brian,
GammaKnife is the best radiosurgery treatment (high radiation dose delivered in 1 or few sessions), and there are other types of the radiosurgery that could be used. But if the bigger met is surgically resectable, it might be better - my son had his 1 cm met resected very easy. The other two 2 mm ones can not be treated by the radiosurgery as they are to small yet to pinpoint them reliably.

[D.ap]

Hey there Brian

I am really sorry to hear of your brain lesions. Has the neurologist said that they are unable to be surgically removed? How fast have they grown?
Hang in there. It's certainly is scary but there are lots of fellow ASPS patients that have been through what you are experiencing and it is surmountable.

Write when able.

Love
Debbie

PS how were the brain lesions found? MRI or PET?