Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Ivan wrote:Lung CT is generally pretty good. There are nodules which slowly grew 5->7mm, 3->6mm, and 3->5mm over a course of 4 years. Neither of them are exhibiting a spectacular rate of growth, so likely no action will be taken between now and the next scan as they are too small to be ablated.

There is nothing larger in size. There are multiple other stable nodules 5-7mm in size, although I do suspect a few of these to be dormant mets. Overall, there are 50 nodules I keep an eye on, but many of them are likely scar tissue from previous laser ablations.

Next up is a brain MRI on Jan 31.I am requesting an abdominal MRI for Feb, hopefully this wish will be granted by my oncologist.

Hey Ivan,

Glad you're doing well. Is there a reason you're requesting an abdominal MRI versus a CT of abdomen/pelvis w/contrast? I assume the MRI gives a better picture?

Also, to clarify, after your Dr. Rolle surgeries, how many lung nodules do you think you have remaining that are not scar tissue?

To limit radiation exposure. Also it does give a better picture, apparently.

I've had 8 ablated since 2009 (my last laser assisted thoracotomy). 2 or 3 more here are definite slow growing mets to be ablated at some point in the future, probably next year. The rest - no idea, maybe 10 more? Just a guess, because the rest of the nodules are stable for 4 years or more.

Dear Ivan,
I am so grateful for the relative stability in your lung mets. The very small amount of only 2-3 mm. of increased growth during the past four years is certainly very minimal and Hopefully will remain so. Your personal vigilant following and monitoring of your lung mets is very commendable and demonstrates the critical importance and benefits of being pro-active and knowledgeable in this battle with this unpredictable disease.
My very best wishes and most positive thoughts will be with you for very good scan results from your brain MRI at the end of January, and I Hope that you will be successful in getting your abdominal MRI scheduled for February. In the meantime, have a wonderful, funfilled, relaxing, and joyous holiday season and a very healthy and happy start to the new year.
With warm hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

'Yes' for abdominal MRI in Feb.

Thanks, Bonni - I'm feeling great. This is the first scan in a ~1 year where nothing had to be done. That's nice for once.

I think it's definitely useful for me to read my own scans. I'm sure the radiologist will call it "stable" whereas I've already had the nodules referred to our location ablation team for consideration by my oncologist to get their opinion on the location, etc. Beats running around like crazy after a scan like a chicken with its head cut off

Thanks for your quick response and the updated and additional information Ivan That is very good news about your successful scheduling of the abdominal MRI in February . Well done on proactively forwarding the scan info to the ablation team for their opinion and recommendations on the scan results.
Warm hugs, happy holiday best wishes, special caring thoughts, and continued Hope,
Bonni

Yeah, the radiologist report said the scan is "stable". Going back to the one from 4 months ago, I would actually agree. However, going back to 3-4 years ago there's some obvious growth now. This is how this disease likes to sneak up on you.

I'd like to get the simple ablations done here in Vancouver for two reasons. One, we don't have to pay here. Two, we don't have to travel to Detroit and stay there for a week. Obviously, for anything complicated, Dr. Littrup is the man.

The encouraging thing about all the scans that I have carefully reviewed is that there are VERY few nodules which grew from a size that was too small to be seen at all. The vast majority which were ablated or have now been identified have already been visible since 4 years ago. This leaves a hope that in ~10 more ablations there will be very few things that will grow as long as the course of the disease remains the same.

When you say 'laser assisted thoracotomy' back in 09, are you referring to Dr. Rolle?

I'm considering Dr. Rolle again, so I'm planning on getting the necessary reports and CDs ready from my doc to send to him.

So glad to hear your status is stable.

Dear Ivan,
I continue to applaud your very pro-active and knowledgeable approach to fighting your disease, and share your Hope for sustained disease stability. Have a wonderful and most happy holiday season shared together with your dear family and friends.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

Jen, it's not stable. There's very small gradual growth. The radiologist didn't see it, but I saw it.Yes, Dr. Rolle. If that option is at all open for you, I would certainly do it.

If anything, here I am 11 years later after diagnosis. I had close to 200 mets killed. If they weren't, I would probably be dead by now.

Jen

Good evening

Hey the articles I referred you to earlier were resection oriented I realize. The point being, eliminatating as many of the tumor load as we can depending on our current health and finacial status should mean something to the health care community. We are paying our hard earned money to premiums and expect something in return.. life
Radiologist will state that our scans say stable in reference to our scans

We all know the following is true--

Ivan wrote:Jen, it's not stable. There's very small gradual growth. The radiologist didn't see it, but I saw it.Yes, Dr. Rolle. If that option is at all open for you, I would certainly do it.

If anything, here I am 11 years later after diagnosis. I had close to 200 mets killed. If they weren't, I would probably be dead by now.

God bless you Ivan for your candid statement

Ivan, sorry about that…I too am familiar with radiologists saying my scan is "stable" when it really is slowly growing. =/

If I am eligible for Dr. Rolle, do you feel it's better to get the procedure done sooner than later? (Hypothetically speaking), if I was to get the operation done by Dr. Rolle, I'm sure new nodules will appear later after the surgery… Not sure how long I want to wait to get the Dr. Rolle procedure done if I am eligible. Honestly, I'm also scared to even have the procedure done since it's so invasive and involves lots of cutting. =/

Best,
Jen

I would do it right away since you probably already have as much as can be removed at one time anyway.

Sure, it's a painful procedure. You do look like you were attacked by a shark after. The upside is that a complete recovery is possible. The other upside is that hopefully you don't have to die. I had 5 thoracotomies, and that's fine

The latest scans have been forwarded to Dr. Littrup to review after the holidays. Apparently, one of the mets which are slowly growing is in an awkward location. The other one is easy. This is based on what the local ablation doctors said after reviewing the scans and agreeing with me that there was a slight interval increase in met size.

Dear Ivan
Thank you for the update. I am sorry that there appears to be growth in an awkardly located lung met, but am grateful that you are proactively following it and having Dr. Littrup review the scans for his opinion on the possibility of ablating the met. I'll be anxiously awaiting your next update and in the meantime am sending my most positive thoughts and very best wishes for a very happy and healthy New Year.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

Ivan

I'm still an emotional mess after the loss of dad but saw this and had to say something!

Sending you hugs and i know you will kick this things lil butt... Can you have another open surgery? Or can Dr L do this?

Ill try and pop back more in a few days i am still in this turmoil

BTW i loved the post you gave me ty <3