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

[Bonni Hess]

Dear Mania,
I am so grateful that Paula appears to have some treatment options for her concerning lymph node mets, and I agree with Olga and Ivan that pursuing treatment of the lymph node mets with an ablation with Dr. Vogl as soon as possible should be her first treatment priority. Following that, I think that it would be wise to at least explore possible laser resection of Paula's lung mets with Dr. Rolle before beginning a sysmtemic treatment so that Paula has the lowest possible tumor load which might enable the systemic treatment to be more effective. I share Olga's concerns about Paula's severe headaches and vomiting since these sympotms can be assosciated with brain mets. I don't remember any of the other former Cediranib patients reporting problems with severe headaches and vomiting following discontinuation of their Cediranib medication, but again they may have just failed to mention it. I think that it is extremely important that Paula report these symptoms to Dr. Kummar and Dr. Butrynski immediately to find out if this is a common side effect for patients discontinuing Cediranib. I also think that Paula should schedule a brain MRI immediately to rule out the possibility of brain mets especially given the known possibility of rapid disease progression and tumor growth following discontinuation of Cediranib. Regarding a systemic Trial with either Crizontonib or Arq-197, in view of Paula's relatively limited and short term response to anti-angiogenic medications, I think that trying a different approach like a C-met inhibitor may be a good idea, but I again agree with Olga that you should try to obtain as much researched and anecdotal infomation as possible about documented ASPS patients' responses to these medications before making this important treatment decision. As always, I continue to hold dear Paula and you very close in my heart and most caring thoughts, and to be deeply appreciative of your sharing with this Board.
With deepest caring, healing wishes for Paula, and continued Hope,
Bonni

[MANIA]

Hi,
Olga thank You for keeping things in order,
Bonnie thank You for Your comforting words.

We are still in a process of waiting to confirm ablation possiblities in Frankfurt.
Paula ask me to post here her big favour for Your suggestions how to search ARQ trial, or regular treatment (is it already in regular treatment procedure?)
THank You and we will be back with more info.
gretings to all of You

[MANIA]

Dr. Vogl confirmed possibility of ablation over the phone talk with Paula.

Unfortunately I didn't hear what he said. Paula did have a feeling there were some communication problems, so there is no big hurray here. he didn't want to talk to her so much, and didn't answer her questions regarding ablation she asked in her email to him, instead he replied he'd talk this over with Dr. Butrynski. Paula is waiting for Dr. Butrynski's opinion on all this Frankfurt ablation thing, unfortunately since one week he doesn't reply to her emails.

At the moment we are waiting for Dr. Butrynski and Dr. Vogl to contact each other and talk. Waiting is not what we love in this situation.

[Ivan]

Mania, I think that if Dr. Vogl said that he feels confident that he can ablate all the big nodules (how many?) you should pre-book a time for a procedure so that you are ready to go quickly when the decision is made.

[Olga]

I think he probably said that technically he is able to ablate these nodules but he wanted to discuss first with Dr.Butrynski if the ablation is the right thing to do in a planned scheme of the treatment overall and now the appt. with Dr.Vogl will not be booked until they talk? Mania - does it sound right?

[MANIA]

Exactly Olga, this is it. On monday we will email and call,
and I hope at the end of the day I will report the news here.
Have a good sunday.

[MANIA]

So, I have some more news but I wish I knew much more:

dr Vogle suggests chemoembolisation (which is Localised Chemotherapy" - minimal-invasive treatment of lung tumors)
and abaltaion as a treatment option using either mirkowave or laser.
I didn't understand it before.
From what I found on dr Vogle page
"Chemoembolization drug typically is composed of Mitomycin C as the chemotherapeutic agent and Lipidol and Spheres as the embolizing material. Additionally, other cytotoxic drugs could be be applied depending on tumor-response."

They are available right away, and we know how much it costs.
BUT we are remaining still with many unaswered questions:
what kind of chemo do they treat ASPS nodules with?
what about ASPS being resistant to chemo? does it make chemoembolisation a good option for Paula?



What is the best for Paula, again?
many cycles of chemoembolisation????
We can not get a hold of dr Butrysnki. We don't know his opinion on this. He didn't reply Paula's question concerning ablation. He just answered some others. what is it???
Now trying to synchronise doctors over the ocean is really difficult.aaaaaa!
how to do it????

love to all of You, I will be happy to read Your opinions.

[Ivan]

Mania,

Chemoembolization is very localized, and in (I would think) a much higher dose than systemic treatment. So, it's another local treatment. When I received an opinion from Dr. Vogl about my lung met I recently had cryoablated here in Vancouver, he also suggested embolization first. I ended up getting cryoablation here so I can't really say anything about it from a personal experience stand point - which is of limited value anyway.

Dr. Vogl is on the leading edge, not many people do this procedure as far as I know. He told us that he believes that it would reduce local recurrence rates, which is probably the main issue with ablations.

Again, the main thing here is the ablation. Chemoembolization probably can't make things worse, and (according to Dr. Vogl who is one of the leading authorities in the world on ablation) is supposed to make the ablation even more effective.

[MANIA]

Paula prebooked an apointment for this thursday to chemoembolization procedure. At the same time her leading oncologist is trying to reach dr Vogle to talk to him and give his perspective (which is crucial to Paula). It is difficult with their busy schedules and time difference.

She has tumor in lungs and in lymphnodes around chest area, and lymphnodes are a matter of our concern.
We were told they are in very tricky place, totally unresectable and dangerous to touch surgicaly. that's why it is kind of crazy
that dr Vogl agreed to chemoembolise lymphnodes. I started to think that dr Vogl ment nodules in lungs when He called Paula and proposed chemoembolisation.
I was told here in Poland that chemoebolising lymphnodes seems impossible since but knowing dr Vogl's great expirience and innovative way of approach I still think (hope) it's possible He ment lymphnodes.
He confirmed over the short telephone talk he wants lymphnodes and lungs. SO I really don't understand too much, but since he wants to treat Paula I just think the best option is she sees him in person and clears things out. It's only 2 hour flight,

We are not doctors and sometimes things are not so clear to us. And to feel safe it's good to know beforhand what are we deciding for. At the moment it's still unclear, but Paula decided to go to Frankfurt and see dr Vogl in person. It's is too hard over the phone, since he is not very talkative guy

Besides, there are no other options which would be effective

So please send us some good thoughts
m

[Ivan]

I think your reasoning is correct.

Do you know how many Dr. Vogl says he can do? I.e. can he do all the big ones?

[MANIA]

He'll do his best- that's what I know.

[Ivan]

He'll do his best- that's what I know.

OK then make sure when you go to meet him you know -

1) How many big ones Paula has in total
2) Which ones of them are the most dangerous, if left untreated
3) Which ones he's planning to ablate, also ask if for some dangerous one an incomplete ablation is possible with the idea of re-treating it again later completely

Ideally you'd want him to to do ALL the big ones, but at the very least all the most dangerous ones which are close to some important structures. For example, I wouldn't really want to do, say 4/7 but the 3 that he couldn't doing being the dangerous.

[Olga]

About the embolisation - Dr.Vogl does the embolisation of the feeding blood vessels and not the tumors themselves. He goes trough the veins until he reaches close to the tumor (and he looks at the screen to see where he goes during the procedure) then he injects that drug to block the vessels and to get to the tumor. So it is doesn't matter where the tumors (mets) are - in the lungs, liver, lymph nodes - as long as their feeding blood vessels are accessible. As I understand, the embolisation increases the chances of the completeness of the following ablation (LITT, microwave - whichever he considers the best in that location), because there is usually a heat sink effect when he is trying to cook the tumor but if the blood vessels are open the blood cools off the areas of the tumor and they are not completely dead.
I think that Dr.Vogl sees the benefit of this procedure for Paula - that he could kill or at least block a few bigger ones that might represent an immediate danger in the close future if left untreated and then you guys can proceed with looking for the other treatments or clinical trials.
There is a very nice small inexpensive hotel close by the university hospital in Frankfurt - about 20 min walk or 5 min by taxi or 10 min by tram from there to the radiology - its called Everest and they have breakfast/internet at the hotel. It can be booked at the hrs. If she will need more lengthy stay, I would book an apartment in the Sachsenhausen area of Frankfurt (it is a good area close by with the nice small restaurants) at the www.all-inclusive-apartments.com some of them have free internet (I was going to book #12 there when we were going there). Unless she has a place to stay in Frankfurt.

[Bonni Hess]

Dear Mania,
My most positive thoughts have been with Paula and your family for a very good and successful outcome to Paula's yesterday's chemoembolization appointment with Dr. Vogl. I Hope that Dr. Vogl was able to do the procedure and to destroy the lymph node mets.
I Hope too that Paula tolerated the procedure well and is now resting and recovering from it. You haven't mentioned her severe post Cediranib headaches in your last few posts, so I am Hopeful that they have resolved and are no longer an issue for her. I will be anxiously awaiting your update when your time and the situation allow. In the meantime, please give dear Paula and yourself gentle hugs from me, and know that my most caring thoughts and very best wishes are with both of you.
Heart to heart with deepest caring, healing wishes for Paula, and continued Hope,
Bonni

[MANIA]

Hello hello
thank You for Your warm thoughts. Paula is doing very well. She was taken care of by our brother (her twinbrother) while in Frankfurt. Procedure went fine
"infusion with 8mg Zofran und 20mg Fortecortin the transarterial Chemoembolization was performed with the application of 9.84 mg Mitomycin C, 49,46mg Cisplatin and 1285,93 mg Gemzar"
very very quickly, and then she was feeling allright for next few hours.
Then 2 first days where kind of tough (wery weak and vommiting), right now she is back to her normal feeling

What we don't like is that dr Butrynsky is silent. Paula missed his support in making decision about chemoembolization, and he was just impossible to reach.
That sucked. She'd expect her leading oncologist to be there for decisions etc. Having him overseas is quite difficult.
What we also didn't like is that on CT performed after chemoembolization it was clear that nodules in lungs and in lymphnodes were bigger than on CT scan from 3 weeks ago.
But we move on.


Our current situation is:
1. we are looking at the options for ARQ in Europe
2. we are exploring the possibilities for treatment in Tianjin Cancer Hospital in China
(hoping for resection or some kind of treatment that takes out the cancer nodules from lymphnodes and lungs)
3. waiting for brain MRI schedule

Thank's for being for us here sharing Your suggestions. Hugs to all of You.