Ivan rocking it since 2003

[Fictional]

With this cancer, it is wise to be skeptical. It has a long arm that reaches across the years.

A few months ago we were happily planning to leave the ARQ study because 'K''s lung nodules continued to grow slowly on the meds - so we thought it wasn't working much... but we resumed after the path result was back, and after the continuing drip-drip-drip of new lung nodules, it was great to see that they stopped.

We know at least 1 of 'K''s lung metastasis was negative for met...we did not test more than one. Vistica told us he searched in his ASPS samples and found 3 out of 3 metastases (1 jaw) was positive for met. We did not have all of 'K''s lung nodules tested for met., but we know her primary was very positive for met as well as cox2.

Her smallest lung nodules were negative for VEGF and PDGF - so it makes sense why they did not response to sutent - or maybe we are only seeing what continued to grow after a few courses of sutent.

We want to see the blocks ourselves from Germany. There are 6 on her left that are continuing to grow at about 1 mm per month - sounds similar to Ivan. Rolle wants to remove them we think in the near future, but we would like to continue on ARQ as long as possible to prevent new ones and the timing will be something to consider carefully. Our biotech friend as also told us more molecular profiling tests are available and we may see about sending some of the most recent lung nodule tissue to her, too.

We are worried Arqule will kick us out for good if we go to have another surgery - beside the evidence from ARQ is that partial responses occur only after more than 12 weeks on the medication, and many more begin to shrink after 20 weeks. We don't want to keep starting and stopping ARQ if the nodules are not posing imminent risks.

We know some people in our situation were able to get to cancer-free with just primary out and thoracotomies alone - but we consider 'K' at higher risk for recurrence / disseminated disease because of the size of her primary (5-6 cm). It is very tricky coordinating all these medical opinions of doctors located in different states and countries.

[Olga]

Just a short update on Ivan's status. He had his 4th surgery to remove lung metastases in Germany a week ago, we are currently there for another week. After the long deliverations and miscommunications between our oncologist and interventional radilogist in Vancouver and Dr.Rolle in Germany (it was initially planned to do an RFA for the one faster growing met and the plan was discussed) but the time was lost and the met has overgrown the size better suited for the RFA and became to close to the chest wall so its damage was a possible, the cryo was also discussed but with the Spring break unterference it took 4 weeks of the time to get a second opinion from Dr.Littrup. So we ended up by doing the next surgery in Germany loosing the less invasive options - the RFA due to the bad location close to the heart and the chest wall, the cryo due to unavailability (and we now know that it would not have been a complete ablation - more on it later), the VATS and minithoracotomy due to the massive adhesions after the previous surgery. Dr.Rolle resected this bigger met that was located on the outer edge of the lower lobe in the left lung between the pericardium and the chest wall and additionally 16 other mets that he could find. ASPS mets that are bigger then 15-20 mm are monsters.
Ivan feels very good, no complications this time probably because of the less extensive resection and good drainage this time, he started the training rehab classes on his 6 day after the surgery and very mobile. His pulmonary reserves before of the surgery was found excellent, the best they had on record at the hospital including all the staff, not patients. Dr.Rolle was very impressed and happy to see the proof that his technology does preserve people lungs.
We are thinking about the systemic treatment, as Ivan has some residual small mets in both lungs and it seems that the rare cases of the success that ASPS patients had with the systemic treatment were with the bigger mets resected and the smaller mets treated by some chemo - gemcitabine or vinblastine weekly, also a few conventional regimens as MAID or AIM. I am not sure if cediranib trial is a good option for the smaller mets as they have no blood vessels or do they emitt that signal anyways? I have plans to collect some additional info before we are able to decide as how to proceed, but the internet is very slow here. I would need to find out if there was a response in the smaller mets size on the cediranib trial by Pf.Judson or only in the bigger mets and whas size of the lung mets was when they responded to gemcitabine only and conventional chemo cases.
So overall we are good for now. I might be to slow with the registration of the new people though.

[Arch]

Hi Olga,

Thanks for giving us the update and glad to know that Ivan feels good after the surgery and is recovering fast. Its very encouraging to hear how redo thoractomies with Dr.Rolle's technology are helping Ivan and they seem to be pretty good at preserving the lungs.

We are also coming to Dr.Rolle in May, you would have left by then(would have been very happy to meet you and Ivan). We too are looking for some systemic treatment after the resections because we don't expect Sree's resections to be complete.

Prayers and best wishes.

[Beth]

Dear Olga,

I will try to get a copy of my son's ct scan tomorrow since we are going to NIH for labs, EKG, and consult with Endocrinology (it seems that the cediranib indeed may be affecting the thyroid but I will report on that when I know more). Since my son's cancer is quite advanced, I'm guessing that if there is any very small change of decrease in size of tumor, it will be the larger ones as you believe, but I will let you know what I find. My best regards for dear Ivan,

Beth

[Bonni Hess]

Dear Olga,
Thank you for the thoughtful update. I am so very grateful that the laser surgery was successful in resecting the large concerning chest wall/pericardium area met as well as 16 smaller ones, and that Ivan is recovering so well from the procedure. It is wonderful that Ivan is able to maintain his pulmonary reserves so well through his very active Lifestyle and dedicated exercise regimen which enables him to recover more rapidly. I Hope that his recovery continues to go well, and that you have a safe return trip from Germany. I will be anxiously awaiting your next update regarding your systemic treatment decision once you retrun home. In the meantime, please take care, give Ivan a gentle hug and healing wishes from me, and know that you are both in my continued special caring thoughts and prayers.
With special caring and continued Hope,
Bonni

[Ivan]

I am back home, and everything is awesome. This was the easiest surgery of them all, by far. You lucky bastards getting surgeries to remove <20 mets don't know how well you have it

[Brittany Hess]

I'm so happy that your surgery went well. You are very fortunate that you can afford to have that type of lung procedure. You are also very fortunate that you have not had to have brain surgeries or spine surgeries. I always got through all my surgeries like it was just a breeze...until I had my 2nd spine surgery which has affected me in a horrible way. Not everyone has the same exact type of procedure as you've had, so please don't make others feel bad...everyone's bodies are different and heal in different ways. I will say again, I am very happy that you're surgery went well, and I wish you continued good healing

[Ivan]

I'm so happy that your surgery went well. You are very fortunate that you can afford to have that type of lung procedure. You are also very fortunate that you have not had to have brain surgeries or spine surgeries. I always got through all my surgeries like it was just a breeze...until I had my 2nd spine surgery which has affected me in a horrible way. Not everyone has the same exact type of procedure as you've had, so please don't make others feel bad...everyone's bodies are different and heal in different ways. I will say again, I am very happy that you're surgery went well, and I wish you continued good healing

Britanny, I wasn't being completely serious. I know that I am pretty fortunate to avoid mets in other locations so far. I have a lot of respect for you in particular, considering what you've fought through.

The real surprise for me was indeed how much of a difference the number of resected mets makes. I did not expect that. I was kind of hoping that it would make some people feel better about having lung surgeries. I guess I was wrong.

[Olga]

We had a first after the last (5th overall, 4th laser assisted resection by Dr.Rolle) April 2009 lung surgery meeting with Ivan's oncologist Dr.Knowling from BCCA on Friday, July 3.
Ivan’s first after the last surgery scans were done in the end of June, 2009 (about 2.5 month after the surgery). He had all possible scans this time by my request - CT scan of the chest and abdomen with contrast, whole body bone scan, brain MRI.
The result is mixed. He is miraculously continuing to have no other metastases anywhere in the body - all scan except lungs are clear, no mets found anywhere else outside the lungs. I suspect that the aggressive resection of the lung mets most probably does something here - ether it prevents the secondary dissemination or the citoreduction helps the body to keep the other metastases dormant.
The report from the lungs CT is very confusing and I have sent Dr.Rolle the CD with this scan for his review - even our oncologist this time asked us to do so as the radiologist provided a very poor reading. The report provides very little details but it says that they see more small mets on both sides and about the interval growth with the appearance of the cavitating nodules in the left upper lobe - the one that was just operated on. It looks to be consistent with the typical appearance after the laser assisted resection - I mean that I hope these are not the fast growing nodules with the central necrosis but the necrosis after the laser assisted resection that is nodular in its appearance. They also used as a baseline the previous scan that happened to be done at the other scanner at the other Vancouver hospital on the bigger step between the slices so the smaller mets that were there might be missed by the previous one and appear as the new ones on that one. I would ask it to be reread and compared to the last one we had on the same scanner in January - but this though only occurred to me after we left and our oncologist happened to have her 3 weeks vacation starting the next working day after me met and she was more then happy to ask us to ask Dr.Rolle to reread the scan (I wonder when his patience would end and he demand them to do their job first, as I understand it takes a long time to reread the scan).
The plans for the systemic treatment were discussed on that meeting - she started from saying that she want to see the evidence of the progressive disease before we start as none of the options are very promising and the quality of life is at stake. We discussed:
- sunitinib (we answered that we see no evidence of durability of responses in ASPS and also being on it might preclude one from cediranib later if it starts at some point and it is unknown if it will contribute to the improved survival overall if resistance develops);
- R1507 is available at our clinics BCCA here and he can be enrolled;
- vinorelbine (vinca alkaloid) she had a partial response in ASPS patient of some duration, we hadn't ask for how long, she gave us a few pages to read re. side effects;
- gemcitabine (she wants to see anything official besides anecdotal unproven reports on the board like ours and Dr.Kelly the oncologist that treated Sarah does not respond to us and to her, I promised to try to establish the contact when Dr.Knowling is back from the vacation);
- interferon-alfa (Dr.Knowling thinks that there are to many side effects with the low efficacy but I think that it is a good option as it is low toxic for the body overall and I know about the case it seems to have worked to keep small mets from growing for a few years after the patient stopped the drug);
-cediranib if we can wait and when it will be hopefully reopen as a next stages trial (not available anywhere at the moment except pediatric trial in US in two locations).
No combination/metronomic therapies were discussed in dept as she does not want to look into anything that was not shown to have any good (better if it is published) result in ASPS before.
This is it for now, we are waiting for Dr.Rolle's impression of the CT scan.
In the meantime Ivan is very much enjoying by his summer, he recovered very well and is playing tennis and volleyball for a few hours every other day, does very long hikes in the mountains and reads Hemingway. The summer is very good this year in Vancouver.

[Amanda]

Dear Olga,
I am sorry that this is happening why they couldnt get a good read makes this so frustrating! I am holding on to hope that the new read on the scan will make the situation more clear and that there will be no need for chemo. He is young and strong and positive this makes a very big difference. I feel from all i have read that chemo done at the wrong time or to quickly if it is not spreading can do more harm then good. I am also talking about treatments with my onc tomorrow and i am holding that i will not go on chemo unless i know 100% that this is spreading.
I hope that mone is dormant and will stay that way.
I will as allways keep you both in are prayers and I hope that when you post next it will be positive news!

In healing hopes and prayers

Amanda R

[Olga]

Some update - Dr.Rolle reviewed the scan done in June 2009, the first after the last lung surgery (Apr.2009) and compared it to the previous scans going back in tine - we sent all set of the scans in the last 3 or 4 years on the same disk (all they had in the radiology dep. of the cancer clinics where he is seen). He spent a lot of time going back and forth with his radiologist and verifying the locations where the resections were done by him in the last two surgeries. His verdict is - he saw no growth at all, all stable nodules for more then a year now, after the first lung/second round surgery except the one peripherally located met that was growing rapidly and that was the reason we had to go for the second lung/second round surgery (if you are still able to keep a track of his surgeries...). The stability for the residual small mets continued after the second lung/second round surgery. There are no nodules more then 10 mm anywhere and he recommend not to do anything at this given moment as we have no way to know if anything we try works. We also have no idea what are the nodules that are seen and were missed on the surgeries due to the extensive work required to go trough the debris - on the last surgery 2 of the bigger nodules and a few of the small nodules were found fibroid/scar tissue by the pathology. It was very flattering to hear:( so I hope that we bought some time to hang around and wait for the cure...

[Fictional]

Wow - sounds great! Wonderful to hear for you all.

[Amanda]

Olga,
I am very glad to hear the news!
I hope that there is a cure soon for all of us.

Amanda R

[Arch]

Olga,

Glad to hear your updates. This option seems safer than trying any trial drug especially when the disease is stable.
All the best to Ivan and hope you are having a wonderful summer.

Arch

[Olga]

Update! I have a great result to report. A week ago Ivan had his CT scan and today we met with his oncologist, Dr.Knowling to hear the result - he is stable!!! And even more - some of the nodules (that were noted as increased on the last and were later classified like post laser surgery artifacts by Dr.Rolle) are definitely shrinking and contracting to the scars or loosing their nodular shape getting flat so they are now proven post-laser scars that just remained round for awhile and looked bigger on the previous scans. There is a new radiologist at the BCCA that finally issues detailed readable reports, but of course the CD with the scan is going to be sent to Dr.Rolle as soon as it is burned. Even our oncologist now is saying that it is OK if they look bigger on a few scans after the surgery due to the inflammation and processes going on and off there that we even have no idea what is really happening there. Even on the non-operated lung there might be some benign change after the surgery on the other lung by different reasons - for example when the person is on the blood thinners and other meds. One time Ivan's scars on the non-just-operated side of the chest started to bleed after the was taking the blood thinners after the other side surgery - it might happen to the nodular scars that are inside of the lung too (my uneducated guess). So we are 6 month stable after the last surgery on the left lung, next CT scan in May 2010, Ivan feels great and is doing all types of trainings, competitive level of volleyball, bicycle, running - he started some new methods of training that suppose to increase the ability of your lung tissue to extract oxygen from the passing air and is saying that it is already plus 5 % - he might want to go into deeper details by himself, but the bottom line is - we know that we own his lung capacity to Dr.Rolle's lung saving laser assisted resection technique and accuracy, but Ivan is definitely doing his part to use this advantage, they are a good team.