Ivan rocking it since 2003

[Ivan]

My previous 2 ablations were done at around 2 cm, while this one was done at 1 cm. There is a VERY BIG difference. A 1 cm ablation is 99% asymptomatic - no pain, even on the deepest breath. A 2 cm ablation is still ok, but definitely more pain and discomfort. I would imagine that a 3 cm ablation would be progressively much more difficult.

I'm obviously taking it easy right now, but I feel 100% physically fit - not even a few percent are missing from lung capacity.

And, of course, the amount of healthy lung tissue being damaged is far less. I personally view ablations as a long term management strategy, so this is a very important point. I will make a concerted effort to ablate early in the future. In my case, that means looking at the scans myself very carefully.

[Amanda]

HAPPY BIRTHDAY! <3

[Olga]

Thanks Amanda, Ivan is fortunate to spend his BD in Mexico with his GF - enjoying the sun&surf plus no mom anywhere near:(

[Amanda]

OooOO Mr Ivan *Tsk tsk tsk* You left your mom at home! Better bring her back more then a shirt lol
I am glad he is traveling an now i will see cool pictures hehe

[jcs2007]

Thanks for posting the info about your recent cryo. glad it went well and you were able to enjoy your b-day.
This made me think about my involvement with the scans since I totally rely on the report and never view or compare.
I would not really know what to look for since some cell location in lungs may change with his breath intake?
Should I be more proactive?
thanks, cindy
Ps. my son is still on ARQ trail( almost 3 years now with stabiltiy but hoping for one day to hear NED)

[Ivan]

OooOO Mr Ivan *Tsk tsk tsk* You left your mom at home! Better bring her back more then a shirt lol
I am glad he is traveling an now i will see cool pictures hehe

Don't worry, they went on their better and longer trip right after I came back.

Thanks for posting the info about your recent cryo. glad it went well and you were able to enjoy your b-day.
This made me think about my involvement with the scans since I totally rely on the report and never view or compare.
I would not really know what to look for since some cell location in lungs may change with his breath intake?
Should I be more proactive?
thanks, cindy
Ps. my son is still on ARQ trail( almost 3 years now with stabiltiy but hoping for one day to hear NED)

I have a huge monitor where I can compare them side by side. I work with images a lot, and it's fairly easy for me.

I can't recommend it to everyone, but there is no question in my mind that me reading my scans has had positive results already. I could have done even better in the past, since both nodules I marked "suspicious" in the past I was right about. Should have ablated them earlier too.

[Bonni Hess]

Dear Cindy,
It is so good to hear from you, and especially good to hear the wonderful news that your son has now had almost three years of stability on ARQ-197! I Hope that he is tolerating the medication well, and feeling and doing good. It would be deeply appreciated if you could update his ARQ-197 thread (in the "ARQ-197" topic which is located under the "Other Clinical Trials" subject heading) with information about his ARQ-197 experience and results thus far for all of those who are following anecdotal patient experience with this drug and possibly considering treatment with it.
Regarding your question to Ivan regarding the need to be more pro-active in personally viewing and comparing your son's scans, I would definitely strongly encourage you to do so. Radiologists and radiology reports unfortunately can, and do, make mistakes as we tragically learned the hard way when two different radiology reports during a six month period inexcusably failed to recognize/discuss Brittany's very large, very visible, and rapidly growing spinal tumor! Ever since Brittany was diagnosed in 2001 we have always insisted on personally viewing and reviewing Brittany's scans with her oncologist, but there was an interim oncologist handling her case after her excellent primary oncologist moved to Boston, and before a new oncologist had been hired. The interim oncologist was the head of a very busy sarcoma department, and when Brittany's radiologist reports stated that everything was stable, he told us that he was too busy to look at the scans with us and he insisted that there was no reason for us to do so since the report said that there were no new tumors or tumor growth. It was not until Brittany complained about a lump on her upper back and increasing spinal pain that the large spinal met was devastatingly diagnosed in an emergency MRI. In then reviewing the previous scans with the radiation oncologist and spinal neurosurgeon, the tumor was clearly visible and absolutely should not have been missed by the radiologist or by the interim oncologist (who we suspect just read the radiologist report and never even looked at the scans!) Had Brittany's spinal tumor been diagnosed when it should have been six months prior at a much smaller size, she would not have had to suffer two very dangerous spinal surgeries, failed spinal radiation, and four heartbreaking years of severe, chronic, debilitating spinal pain. Nothing can be done to change the outcome of the inexcusable negligence of the radiologist and the interim oncologist, but we will certainly never again not personally view and review Brittany's scans no matter how good the radiologist report may appear to be. It is better to be safe than sorry, and criically important to be pro-active in demanding a copy of the radiologist report as well as the scans, and vigilant in closely reading and reviewing them,as well as comparing them to previous scans.
Take care Cindy and keep in touch with the Board as you are able.
Sharing the great joy of your son's continued stable disease, and sending happy hugs, best wishes for continued treatment success and disease stability, special caring thoughts, and continued Hope,
Bonni

[Olga]

Cindy - is your son stable by the REGIST criteria (no growth more than 25% between the consecutive scans) or by the common oncology criteria (stable when you compare not only consecutive but also bigger interval scans i.e. at the beginning of the study and now 3 years ago). We really had a problem with them few years ago reporting stable when in reality there was a slow growth between almost each consecutive scans so we had a 10 mm growth in a year and a half without knowing it.

[jcs2007]

Thanks so much for the feedback regarding scans. It is good to hear from others going thru this same journey since this sarcoma is so different.
I will be more pro active and double check on what is meant by "stable." I am very thankful he is doing well. Peace to all in 2012.
cindy

[Ivan]

How is everyone doing?

I had my latest CT scan on 2 Apr 2012. I downloaded a free software to view the scans (http://www.microdicom.com/) in order to be able to compare them more consistently. The problem is that scans from different machines come with different versions of eFilm Lite, which renders the image differently and makes comparison inexact.

The cool thing about it is that it allows measuring nodules to fractions of a millimetre. When comparing two scans, it's just random noise. However, when looking at 6 of them over 4 years it's somewhat useful. Long story short, I found another nodule that is growing very slowly, and here are the measurements for it -

2008 - 6.8mm
2009 - 8.4mm
2010 - 8.7mm
2011 - 8.9mm
2011 - 9.5mm
2012 - 10.1mm

I already suspected it to be growing at the time of the last scan, but it wasn't completely clear. After all, in 2.5 years (2009 to 2011) it only changed ~1mm which is within the margin of error. I wasn't sure about the 2008 measurement, since this was before I had a thoracotomy on this lung. I harboured some hope that it was ablated in-place (which I guess Dr. Rolle wouldn't have done on this size of a met) and that's why it jumped in size. However, such hopes are easily squashed by new evidence of further, sustained, slow growth seen in the latest scan. Dr. Rolle must have missed this met during my last thoracotomy in 2009. My lungs were already a mess of scar tissue at that point, so I don't blame him.

I already emailed my ablation doctor (before even meeting with the oncologist to see the radiologist's report which will, no doubt, declare everything to be stable). He is awesome, responded to my email in 12 hours. Like last time, he agreed that this nodule is indeed growing and is a good candidate for ablation. I'm planning to have it done ASAP, just trying to work out a date.

There are 6 other nodules larger than 5mm in size, and the rest of them don't seem to be growing. There is one more nodule (other than the one that will be ablated now) which I consider somewhat suspicious, so I'll have to keep an eye on it in the future. So far, all nodules that I've considered suspicious in the past have panned out as mets (3/3). I hope to be wrong Overall, I am quite happy with the progression of my disease - especially since cryoablation has become available here.

I'd like to make another note about how awesome it is to ablate at small sizes. Just 6 months ago I had a 1 cm nodule ablated. On this scan, the ablation site is clear - it seems to have dissipated almost completely! 1.5 years ago I had a 2 cm nodule ablated, and that ugly 2 cm thing is still there, not showing signs of shrinking. The ablation site done by Dr. Littrup on another 2 cm nodule 3 years also shows significant scarring.

Did I mention that a 1 cm ablation hurts a lot less and is virtually painless? Be kind to your lungs, ablate nodules at smaller sizes when at all possible

[Bonni Hess]

Dear Ivan,
Thank you for the update and the important shared information. I am sorry that you have a lung met that is showing sustained growth, but I am very grateful that your vigilant following and comparisons of your past scans has allowed you to determine the growth now instead of waiting for it to be determined by the radiologist at some future point at which time it may have grown too large to successfully ablate! I am so grateful too that you now have local access to cryoablation and that you will be able to schedule an ablation soon. You have clearly illustrated the critical importance of being very pro-active in having regular scans and in personally viewing the scans and comparing the scan results over a period of time as opposed to just naiively accepting the conclusion of the radiolgist report which, we both know far too well, may not always be completely accurate and may indeed have important omissions or be misleading. My very best wishes are with you for a very successful Cryo procedure, and l will be anxiously awaiting your update on your Cryo experience and the results. Take care Ivan and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Ivan]

I'm having the ablation done on May 23 here in Vancouver.

[Bonni Hess]

My most positive thoughts and very best wishes will be with you especially on that day Ivan, and I'll be looking forward to your update following the ablation. In the meantime, take care and enjoy a beautiful and happy Springtime .
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[MarietjievdMerwe]

Dear Ivan,
Just saw that you will be having another ablation done? Good luck with the procedure and we know all will go well.
Regards.
Marietjie.

[Bonni Hess]

Dear Ivan,
I'm sending most positive thoughts and very best wishes for a very successful Cryo procedure and a speedy recovery.
With hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni