Paula from Poland - Dx 2009 - RIP 31/08/2011

[Olga]

Crizotinib is only starting its way trough the different stages of the trials and it is not really known what it result might be in ASPS. 'K' had no new mets on it but one of the lung mets she already had, the met that she had an open heart surgery for, has grown while she was on that Crizotinib trial.

[Amanda]

Hello
Sence 'F' isnt reading the forums nor posting maybe we could post her e mail so Mania can talk to her about this drug also?
I dont have Fernetts e mail with me i am at work. Do either of you have it and can post it please for her...
I would like her to talk to 'F' before she makes this huge choice in medication!
Although the Ced trial is a great choice, I woud also want to see all options if i was faced with this decision and make my own choices with as much information as possible

[MANIA]

So, Paula will fly to the US right after the New Year and will have all the tests done to be accepted for Cediranib trial at NCI.
she needs to be active and get things done by herself so she asked me to stay kind of away. It was a bit hard, but I see she is very good in taking her of her own businness so I trust in her potential. I will stay in Poland, our mother will go with her to support her. Propably after 2 or 3 weeks I will come to support. I will keep You posted.

[Ivan]

So, Paula will fly to the US right after the New Year and will have all the tests done to be accepted for Cediranib trial at NCI.
she needs to be active and get things done by herself so she asked me to stay kind of away. It was a bit hard, but I see she is very good in taking her of her own businness so I trust in her potential. I will stay in Poland, our mother will go with her to support her. Propably after 2 or 3 weeks I will come to support. I will keep You posted.

Sounds like a good plan.

[Olga]

Paula was accepted in a Cediranib Phase 2 clinical Trial at NIH and started it, read about her experience on the cediranib forum here:
http://www.cureasps.org/forum/viewtopic.php?f=45&t=586

[MANIA]

Amanda, Ivan, Bonnie thanx.
Ansswering Your question Ivan:
the difference in growth of the lymph nodes is from 2.6cm to 3.1 and from 1.8 o 2.4
It means that Paulinas' progression is 25%.
The tumors in the lymphnodes are unresectable.
Our oncologist Dr Butrynsky proposed 2 options:
1.arq197 or crizotinib (clinical trial in DF)
2. wait for 3 months with no treatment and see how the Cancer makes it's move

We have to sleep with all of this before the decision. Paula is on her way back to Poland.
Hugs to all
m

[Ivan]

Mania, have you considered ablating some the biggest lymph nodes? I heard Dr. Littrup has done done something like that, even in difficult locations.

If Paula only has a few - I would definitely consider it. Also, Dr. Vogl in Frankfurt can do some crazy inventive stuff as far as ablations go, so you can contact him also. He also responds very quickly and can do it very soon if necessary.

Right now the size looks "right" for ablation, but you shouldn't allow them to grow bigger. From my experience, ablation is a low-pain, and low discomfort procedure.

What about the lung mets? I don't remember - have you ever sent the scans to Dr. Rolle?

[Bonni Hess]

Hello again dear Mania,
I know that you and Paula must feel very disheartened right now and that you must be very confused about what is the best direction to go, but I am grateful that Dr. Butrynski was able to provide some possible new treatment options for you to consider. Like Ivan, I too am wondering if Cryoablation might be a treatment option for the unresectable lymph node mets, and if it is, I would encourage you to explore the possibility of having them Cryoablated as soon as possible with Dr. Littrup or Dr. Vogl, but this would need to be pursued immediately because 3 Cm. is about the largest that Dr. Littrup feels is treatable with Cryo. I would personally be concerned about waiting three months with no treatment to see what happens with the disease since concerningly rebound and sometimes aggressive disease progression can occur when Cediranib is discontinued. Since Paula has unfortunately had only limited and short term success with Sutent and Cediranib which are both tyrosine kinase inhibitors, it seems that it might be a good idea to try another type of targeted drug such as a C-met inhibitor like Crizotinib or ARQ-197. However, during the required waiting period between discontinuing Cediranib and beginning a new systemic treatment, it would be a good time to pursue ablation of the lymph node mets if that is a possibility because she could then start the new treatment with a reduced tumor load which might enable the new treatment to be more effective and successful. Please know that my continued most caring thoughts are with both of you dear Mania, give Paula and yourself special hugs from me, and keep the Board updated as you are able.
With deepest caring, healing wishes for Paula, and continued Hope,
Bonni

[Arch]

Sorry to hear this Mania.
I'm wondering if the second anti-angiogenic agent doesn't work as good as the first(no matter the order in which they are tried).
We have seen people go on cediranib first and then move on to sutent and vice-versa, the first agent seems to work for longer than the second. Should the second agent be tried after a certain gap or should it be sandwitched between conventional chemo ? Lots of questions...no answers yet.

[Bonni Hess]

Dear Arch,
Based on the experiences of several patients on this Board including Paula, Sree, LCMA, and Matt who unfortunately eventually developed progression on one anti-angiogenic TKI and then switched to a different one and again developed progession, it would seem that your theory might be right, but yet Brittany's Clinical Trial oncologist Dr. Sawyer has told us that there is evidence and data to support the fact that switching from one anti-angiogenic TKI medication that has been initially successful but then developed resistance, to a different anti-angiogenic TKI medication can re-stabilize disease progression, and then it is sometimes possible to return to the initial anti-angiogenic TKI and have resumed stability. As you have said, there are lots of questions but no definitive answers yet, which again illustrates the critical need and importance for ASPS patients/family members to actively participate on this Board and share their anecdotal treatment information and results so that we can all learn and benefit from it because the anecdotal information shared on this Board is available long before published data is, and this time element can be critical in terms of making the best treatment decisions.
With special caring thoughts and continued Hope,
Bonni

[MANIA]

We contacted dr Vogl from Frankfurt, he has to see the CT scans to confirm his opinion, but after looking at some imaging we had and could send via email plus latest reports, he said it would be possible to cryoablate Paula's tumors in lymphnodes. He mentioned something else as a form of surgical treatment, I can't say right now what was it exactly. I will be back with more detailed info within next days, I was out of town talked with Paula only over the phone. Once I have more details I will share it here.

Our current situation is that Paula is almost sure she will go for Crizotinib clincal trial at Dana Farber next.
Crizotinib looks promising, ARQ also has it's advantages. So we have last days to get some info about differences and whats better for Paula. But questions arrise here - how to actually find which one will be better?

I think she hates the thought of surgery, but I started to realise just now (also by reading contents of this forum) that resecting whatever is possible is the best option to get rid of the tumor cells.

Paula is off Cediranib since one week and feeling verry fatigue and weak. First side effect of being of the drug was horrible headache, then sHe had vomiting days. Right now she starts to feel better, but heavy headaches are still present.
Will be back to You soon.
regards

[Ivan]

We contacted dr Vogl from Frankfurt, he has to see the CT scans to confirm his opinion, but after looking at some imaging we had and could send via email plus latest reports, he said it would be possible to cryoablate Paula's tumors in lymphnodes. He mentioned something else as a form of surgical treatment, I can't say right now what was it exactly. I will be back with more detailed info within next days, I was out of town talked with Paula only over the phone. Once I have more details I will share it here.

Our current situation is that Paula is almost sure she will go for Crizotinib clincal trial at Dana Farber next.
Crizotinib looks promising, ARQ also has it's advantages. So we have last days to get some info about differences and whats better for Paula. But questions arrise here - how to actually find which one will be better?

I think she hates the thought of surgery, but I started to realise just now (also by reading contents of this forum) that resecting whatever is possible is the best option to get rid of the tumor cells.

Paula is off Cediranib since one week and feeling verry fatigue and weak. First side effect of being of the drug was horrible headache, then sHe had vomiting days. Right now she starts to feel better, but heavy headaches are still present.
Will be back to You soon.
regards

You should tell her that ablation is not nearly that painful, and the recovery time is very quick. Honestly, I had an ablation less than 3 weeks ago and now I can run, bike, play volleyball - recovery time was quicker than the bad cold I had in February. Seriously.

If Dr. Vogl accepts her for ablation of the biggest nodules, I would go for it. After that's done, go on one of the trials.

You want to avoid the following scenario -

• 1) Dr. Vogl says it's OK to ablate now
  2) Paula goes straight to the trial instead
  3) The drug is not effective
  4) Dr. Vogl re-evaluates and the nodules are now too big for ablation

[Olga]

Mania - when Paula was evaluated for the clinical trial at NCI - did she have a brain MRI (or at least a CT scan)? These heavy headaches are worrisome.
The other argument for having ablation or resection now (if Dr.Rolle accepts her then she gets more mets resected then one ablated but he might not) is that she is currently already off the cediranib for a week and she needs to be off these TKI for awhile - we just discussed it with Jessie here http://www.cureasps.org/forum/viewtopic.php?f=4&t=590 and he said that NCI recommend 7 days). If she goes on a trial again, she is not allowed to have these when on it, there is an increase bleeding while on a TKI.
Why do you say that Crizotinib looks promising? Did Dr Butrynsky see any signs of its efficacy in other ASPS patients - do you know if he has any on that trial? Do you want to ask Dr.Vogl if they have any relevant trials (or the same) at the Frankfurt univ. clinics? It might be cheaper.

[MANIA]

Here is exactly what dr Vogle wrote us:
"i would consider local chemoembolisation and abaltaion as a treatment option using either microwave or laser"
THe CT scans will be at his office thursday the latest. So hopefully we know by the end of this week if crio is an option.

Olga, we didn't' speak to dr Rolle this time but with dr Vogl, we contacted him, thanx to suggestion that Ivan made. If You suggest we contact dr Rolle for some reason please make it more clear. Also referring to Your post - I might mix something up, but remember that Paula doesn't go for TKI now, cause she already had Sutent and Cediranib treatment. Dr Butrynski suggested we go for C-met inhibitors now, not for TKI. THat's why even when she starts a trial for Criz or ARQ I think it is possible to have a short few days brake for crio. OFcourse we will try to do it before starting the trial. And I will ask dr. Vogl for optional trials for sure.

By the way, how it happened that dr Vogle came up in this forum? Did anyone have an surgical experience with him?

Ivan, You are so right. WHen only dr VOgl confirms for 100% the possibility to do crio, Paula will go for it. Right now she doesn't want to detail/plan it, cause she hates to end up disappointed due to lack of possibility of crio in her case. The lymphnodes are in a very tricky area that's why he have to keep in mind 'unresectable' word.

Olga, You are right the headaches are superworrying. Paula had brain scans in 2009. I know it was too long without checking the brain, she knows it for sure as well. I read so many times here that it is important to have them annually at least. My guess is that she was afraid to look what is in the brain and since the concern was somewhere else she didn't rush for Brain MRI. Now she has to have one. It is very difficult for supporting person like myself to tell her 'just go and do it' so I didn't. It is very hard to force an adult person something and to prove there is more than can be done that she is already doing.I mean it is an issue in our case, and I don't mean to stress her more than she already is. So I just truly hope that the headaches are the effect of getting of the Cediranib.

Regarding Crizotinib , I based my statement that it looked promissing on 'K''s history with it. It is a very good issue to check if there are other dr Butrynsky's ASPS patients on it. Thank You Olga for being so aware.
What would You choose Olga if You had to between ARQ and Criz?
How would You check what is best for You/your closest person?

THank You all for posting and giving Your opinions, it is the best source of information we have at the moment.
I hope You all keep smiling no matter what

[Olga]

Mania - there are so many questions that need to be answered in order to clarify the situation for you guys. So just in a random order.
1. Dr.Vogl is not a surgeon. He is a wide word known interventional radiologist, the head of the multiple international committees that develops standards for that industry and one of the most experienced people in the area, and with the interventional therapies the experience is one of the most important factors. He does more types of ablations and procedures then anyone else as he has all the new tools in his possession, the list is here:
http://radiologie-uni-frankfurt.de/cont ... x_eng.html
I found out about him 6 year ago when we first contacted Dr.Rolle and Dr.Vogl's name come up in the same context that he received the second prize for implementing of the technical advances in the practical medicine (Dr.Rolle received the first prize then for his laser surgery tool). If you go to the Pubmed.gov and do a search by "Vogl ablation" you can see his activity in this field and multiple studies he performs.
Dr.Vogl does diff. types of ablations and this is not the cryo that he offers now but some other ones (cryo is only one type of the ablation using cold). When you get something ablated, it is for only 1-2 mets at once (versus the surgery when you get to remove all the visible mets).
2. Dr.Rolle is a thoracic surgeon. His specialty is multiple lung mets and he can remove more then anyone at once without lost of the big pieces of the lungs as he uses the laser as his tool and it allows him not to cut the wedges but to cicrle around and cut the mets precisely. He has done 4 of the Ivan's lung surgeries. Dr.Rolle is in Coswig by Dresden. People travel there because his technology is unique and although some other surgeons use it in the other countries, Dr.Rolle is its developer and he can do wonders with it. It is a very complex tool to use. Dr.Rolle removes hundreds of the lung mets when they are tiny, but it is a big surgery.
3. I can not say ARQ versus Crizotinib. I do not see any real advantage in K case from Crizotinib as she had her heart metastasis developing and growing while on it and was taken off the trial which is not exactly the sign of its efficacy, also her bigger lung mets were growing all time alone on it but very slowly - less then the limit for the REGIST criteria to be taken off trial - it happens in ASPS. Some stability in other mets is the frequent event in ASPS with no treatment (we see that in Ivan's case all the time). With ARQ there are documented cases of the stability but we also saw many cases when it did not work. There is a report from the clinical trial for ARQ somewhere you can read it.
With the critical situation in some of the Paula's mets I think it is important to get rid of them first. I told that she is better to be off a treatment for the surgery as sometimes they do not allow the surgery when on a trial (if these mets are the targeted nodules that are getting measured) and in most cases there are contraindications, I used TKI as an example and totally forgot that ARQ and Crizotinib are not TKI, you need to check if there are surgical contraindications for these.