Ivan rocking it since 2003

[Ivan]

Amanda, I've stopped taking pain medication 2-3 weeks after a thoracotomy completely each time. I do not have any pain at all, nothing to remind me that I have ASPS other than the scars. I feel nothing now (3 weeks since ablation) just some weird creeks on deep breaths while the lungs regain their full volume and minor dull residual ache 1-2 out of 10 on deep breaths.

After 3 days you will be able to walk a little bit very carefully. Re-read my thoracotomy day by day - http://cureasps.org/forum/viewtopic.php ... =333#p1319 - to get an idea. It will be harder the first time.

I would take 1-1.5 month between the surgeries. There is no sense in taking much more, because this way your recovery will overlap, so you will be closer to normal in 1.5+3 months. If you take 4 in between, it will be 3+3 = 6 months of being "sick" since each lung will be healing in its own 3 months timeframe. In reality it takes a full year to recover almost as fully as possible.

[Ivan]

It's been roughly 1 month since the ablation. Today I did 550 calories on that same bike where I first struggled really hard at getting 500 right after coming back home. I'd say that I'm back at 99+% of normal.

[MarietjievdMerwe]

Well done Ivan! You do now have the bragging rights. It is so important to keep exercising and to keep fit. If you are able to do it, go for it! You are an inspiration to all: young and old.

Wonderful to see that you are fighting this dreadful disease with so much energy. Keep staying healthy and positive.

Kind regards.
Marietjie.

[Ivan]

That was too optimistic. Upon further consideration, I have to admit that I'm still missing around 3%. Will work hard to get it back!

[Ivan]

I had a self requested yearly brain MRI about a week ago. The unofficial MRI result came back via email from my oncologist today. Looks like I have a "suspicious" 4 mm nodule in the left supramarginal gyrus of the brain. That's a peripheral (adjacent to the skull) area, so hopefully that bodes well for treatment. I haven't had any symptoms. After 10 years, who would have thought? My scan is sent to a neurosurgeon for a review.

That's something new.. Lung ablations are too easy, time for something new, right? Figures Anyway, my vacation is cancelled and I should be seeing the neurosurgeon - hopefully soon. Apparently, we have a good one here in Vancouver - Dr. Brian Toyota.

I'm glad the lungs are good for now, so I don't have to worry about them.

[Bonni Hess]

Dear Ivan,
I am so sorry about your suspicious brain nodule, but am grateful that you are so pro-active with your scans that the nodule was found at a relatively small and treatable size. Your having a suspicious brain nodule is very shocking to me after you have not had any mets beyond the lungs since your ASPS diagnosis ten years ago, but yet I know far too well that nothing is shocking with ASPS and that unfortunately it can metastasize anywhere in the soft tissue of the body. Your brain nodule diagnosis truly proves the unpredictability of this very challenging disease and the critical importance of not becoming lax in continuing to schedule regular and complete scans despite long term apparent disease stability and/or mets that have been confined to just one area of the body. I am holding very tight to Hope that the brain nodule proves to NOT be ASPS, but rather some kind of a benign lesion. I will be anxiously awaiting your next update following your appointment with the neurosurgeon.
I am sorry that you had to cancel your vacation plans, but Hope that they can be re-scheduled as soon as this latest bump in the road of your long ASPS journey has been successfully resolved. Take care Ivan and give yourself and your dear mom special hugs from all of us Hesses.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Amanda]

Ivan, wow im sorry
I hope its wrong an that you can move on! When will you find out for sure? From what i have seen an heard at a small size this wont be as hard as a chest surgery!
I think its time i get drugged an go in the MRI....

[MarietjievdMerwe]

Dear Ivan,

Shocker! So sorry to hear and will anxiously await your next post.

Keep well.

[D.ap]

Ivan

I am so sorry to hear of the news. We will be anxiously awaiting to hear of the results.
Write when its good for you.

Sincerely,

Debbie

[Amanda]

Ivan,
I am still trying to understand why this went to your brain.. *If it did* I am going to stay positive till you post other information...
You do not have a large spread going though ... You have seen great Oncs that i am sure are meticulous ... You are in fantastic shape...
Have you looked at the scan? You are really good at reading them...
Well, i am booking an open MRI an will start there. I am that claustrophobic
No matter what you caught this early an will rock this dam thing an go one as usual...
Please, post soon ...

[Olga]

Amanda, when brain mets are found late, it is hard to say what is their origin. They may have metastasized recently from one of the lung mets or were initially seeded from the primary and just stayed dormant for awhile. It is nor rare for ASPS patients to have brain mets found 5-10-15 or even 20 years after initial Dx and primary resection, this is why we are having these MRI. We are going to ask for a bone scan as well after we sort out the possible brain met situation.

[D.ap]

Ivan and Olga

My question to you both ..what is the next step now that the scan shows a lesion/lesions? Maybe a second opinion or further scans? Seeing a surgeon?

Having this devious disease has made us all slaves to it, however with time and understanding we will surely give it a good fight!
You guys are our rock !
We are here for you.

As Amanda has said to Ivan;

" No matter what you caught this early and will rock this dam thing and go on as usual... "

Right on, Amanda.

Debbie

[Bonni Hess]

Dear ASPS Community Friends,
As Olga has inidicated, because ASPS is a metastatic disease, ASPS mets can, and unfortunately sometimes do, show up in the brain as well as other widely disseminated areas of the body many years after the original diagnosis. This is why it is SO extremely important to be very pro-active in scheduling and having regular scans even if your disease appears to be stable and your oncologist naiively thinks that it is only necessary to follow your disease with chest CT scans. During the first couple years of Brittany's now almost 12 year ASPS battle, her oncologist was only following her with regular chest CT scans which seemed to indicate disease stability with very little if any lung met growth until a regularly scheduled six month chest CT inadvertently showed a liver met which would have most likely gone undiagnosed until it became symptomatic if the chest CT scan had not accidentally gone low enough to include the top part of Brittany's liver. DO NOT ASSUME THAT ALL DOCTORS KNOW THE BEST SCAN APPROACH TO MONITORING THIS LITTLE KNOWN DISEASE. DO NOT AGREE TO ONLY HAVE CHEST CT SCANS. DO NOT WAIT FOR A TUMOR TO BECOME SYMPTOMATIC!!! Managing ASPS and fighting this unpredictable and very challenging disease requires vigilance. Having complete scans including chest/abdominal/pelvic CT scans at least twice a year if the mets appear stable and every three months if there is increased met growth in size and/or number, and a brain MRI and full body bone scan at least once a year is essential to find and treat any new mets at the smallest most treatable size. If there is a prior history of brain mets, brain MRI's need to be done every three months as ASPS brain mets can develop and grow very rapidly. Ivan and Olga are to be commended for their very pro-active approach and vigilance which is an excellent example for everyone to follow.
With special caring thoughts and continued Hope,
Bonni

[Ivan]

We have a long weekend, so I won't be able to get in touch with the doctor's office until Tuesday. I called and left a message on Friday, but didn't really expect a response the same day.

I'm pretty concerned about the time scale of how everything gets done around here. It's fairly disorganized and often backed up in our socialized health care system. I hope to speak to the secretary, at least, to find out when I could actually see the doctor. I'm fairly sure that the only reason I am alive and doing well is because we've always followed the mantra "cut early cut often". ASPS can be deceptive in its apparent slowness, since it can take off at any moment.

[Bonni Hess]

Dear Ivan,
I'm sorry for the delay in your being able to talk with the doctor due to the Canadian Victoria Day holiday as I know how very stressful the waiting can be, but Hopefully you will be able to talk with someone in the doctor's office on Tuesday and successfully schedule a consultation appointment as soon as possible. If you find that the delay in getting an appointment is unacceptably long, I would be glad to share the name and contact information for Brittany's excellent and highly regarded neurosurgeon at the University of Washington in Seattle since he has experience with ASPS brain mets and might be worth at least seeing to discuss possible treatment options if your suspected lesion is determined to be an ASPS met.
Your and your mother's pro-active "cut early cut often" approach to fighting your disease has certainly seemed to be successful in preventing rapid and widely disseminated disease progression. You are absolutely correct that "ASPS can be deceptive in its apparent slowness, since it can take off at any moment." which is something that everyone who is battling ASPS needs to be aware of. This important shared information is certainly not meant to frighten people, but rather to try to help prevent dangerous and sometimes fatal mistakes from being made by both patients and doctors who sometimes take a naiive 'wait and see" approach.
My continued most caring thoughts and very best wishes are with you Ivan along with greatest Hope that the "suspected nodule" is a benign lesion rather than an ASPS met.
I Hope that you and your dear mother are able to somehow enjoy a nice Victoria Day holiday. Take care and keep the Board updated as you are able.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni