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

Those who lost their battle with ASPS :(
Olga
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Re: Paula from Poland - Dx 2009

Post by Olga »

Mania, I am sorry to hear that. It looks like Dr.Vogl does not have any better options for Paula then to try to keep these tumors from the faster growth and he was having the difficult time to telling you that. I am always perplexed when the respected and advanced docs have apparent difficulty to say "I do not know what to do".
The tumors are infiltrating and big so he probably hoped that they would shrink as he keeps embolizing their feeding blood vessels. I have to say that I do not really care about the customer service skills of the docs as long as they have an ability and a willingness to help. As for an advice - he probably does not have any and it is not his area of expertise - he treats these mets locally and not systemic. He can not do anything for the multiple small mets.
Did you consult the oncologists from Europe I gave you before re. any new suitable clinical trials.
We had a case of success with the gemcitabine continuously when unresectable tumors regressed. As far as I know we do not have any positive/negative info about other people trying it as well. Gemcitabine with taxotere combo (GemTax) is the second line chemo treatment for sarcomas but we had few people that did bad on GemTax and 1 person that did good on Gemcitabine only (read success stories) and I would try it if there are no other options.

What about dasatinib. In case you missed it. There are some people with ASPS that are stable on it. Look for the clinical trial with it in Europe. It is approved for other diseases but I do not know how to support it being prescribed off label to an ASPS patient by the oncologist - you need a published article or a testimony of an oncologist treating other ASPS patient currently but as I understand other people get it on a clinical trials in US.

Re. other local treatment options in attempt to buy a time. This big infiltrating tumor is casing a lot of problems and Incomplete cryo might be an option to reduce it (might be used when other ablative techniques not close to the vital structures) only Dr.Littrup can tell that - send him the last CT on a CD and tell that Dr.Vogl has already done few chemo embolisations. May be there are other advanced cryo doc in Europe, I do not know. I am not sure Paula will be able to fly if this tumor keeps progressing.
Also consult the cyberknife treatment center in Munich if they can do something about this tumor. It is an advanced radiosurgery and radiation therapy unit:
http://www.cyber-knife.net/en.html
May be you have one in Poland already.
Olga
MANIA
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Re: Paula from Poland - Dx 2009

Post by MANIA »

We are back in POland. I could see that yesterdays dr Vogle procedure helped Paula, she started breathing better right after few hours, and had a good sleep at night. Caughing remains.
Olga, thank You for Your reaction. I admire Your knowledge, and I'm very gratefull You choose to share it with us.
Yes, Paula got all the contacts You gave me, and she wrote to these doctors, while searching for clinical trial. I think it's good thing to contact them again. She said only Prof Judson replied he couldn't help at that moment.

I forewared all the info to Paula. She needs a good partner (meaning oncologist) to make next decisions. We are working on contacting some doctors in Poland as well.
Cyber knife is in one place in Poland. I read it's not so effective though.
Thank You for being with us again. I will keep You posted.
love
Ivan
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Re: Paula from Poland - Dx 2009

Post by Ivan »

Mania - has there been any shrinkage at all from the chemo embolization that can be measured quantitatively? Do I understand correctly that he wants to ablate, but can't unless the tumors shrink?

I am very sorry that Dr. Vogl doesn't appear as nice as some of the other doctors you've seen. Perhaps, it's the fact that Paula's situation is difficult right now, and the language barrier that is making the patient-doctor interaction harder :( I am sure he is trying as hard as he can to help Paula.
MANIA
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Re: Paula from Poland - Dx 2009

Post by MANIA »

Ivan, thank You for writing. I have to say I admire Your spirit, and how You are dealing with Your own ASPS. I will try to answer Your question when we get to see the rapport. Dr Vogle didn't explain exactly how Paula is benefiting from his procedures, he was saying what he is willing to do and how he thinks it should go. Also he explained that each time he treats different area, which he thinks is most urgent to be treated. There is a lot of things I do not understand about what he is doing, but he is not willing to explain them in detail unfortunately, maybe he just thinks our case is not worth it.

What we are looking at right now is TEMLA - Transcervical extended mediastinal lymphadenectomy is a new procedure for bilateral excision of all nodal stations of the mediastinum, except for the pulmonary ligament nodes and the most distal left lower paratracheal nodes.
Here is the link http://mmcts.ctsnetjournals.org/cgi/con ... 005.001693

The doctor who is performing it in Poland is dr Marcin Zielinski. Paula already talked with him, and he should take a look at her scans tomorrow and call her right back. Who knows maybe it can help. I will post what is going on.
greeting and healing whishes
Ivan
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Re: Paula from Poland - Dx 2009

Post by Ivan »

OK, but how does Dr. Vogl know that it's doing anything at all if it's not reflected on the scans? That's the big question for me.

Looks very interesting. Is that where all of Paula's biggest nodules are?
MANIA
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Re: Paula from Poland - Dx 2009

Post by MANIA »

I'm writing to update a little bit.
Paulina wanted to fly to Boston this week to see her oncologist there and feel safe in good hands and decide what steps to take next. She has been of any drugs since april, (went through 3 chemoembolization procedures whithin these 3 months).
She had difficulties with breathing since some time and chest pain on the side which got much worse since 3 last weeks.
She was unable to fly though cause she got much worse.
She had an xray of lungs yesterday and stays currently in the hospital
and it was stated that the cause of the breathing problems and pain was a lot of liquid in the left lung. (it was really a big relief that it's not some evil tumor) Has anyone reading/posting here had similar expirience?
Doctors here want to fix it farmacologicaly cause they are a bit afraid of touching the lungs to pull out the liquid in usual way (drainage is the name of the procedure?)
She feels much better in hospital and believes strongly that in one week she will be able to fly to Boston.

We think that breathing problems and liquid in the left lung are side effects of chemoembolization. Since it was not clear to us how Paula benefited from these procedures, no clear plan and side effects she made decision to stop it.
TEMLA procedure is impossible to perform due to advanced tumor changes in Paula's lungs :(
Still hoping to come up with something. Counting on Dana Farber people to help.

I send thousands of good thoughts, thankyous for reading and advising, and healing whishes to all of you.
Olga
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Re: Paula from Poland - Dx 2009

Post by Olga »

Mania, I am very sorry to hear about these developments. There are some random comments on your post:

1. I do not know about any way to fix the pleural effusion by the drugs, it needs to be drained and I really see no problem in doing it unless they see no space to put in a catheter? The drainage brings an immediate relief, they do not have to pull the liquid from the lung but rather they insert the small tube and the liquid goes out, it is easy. Is she on the oxygen now all the time? If she is, this is the only reason she feels better but the liquid is still there.

2. From the CT scan description you posted earlier, I saw some signs that embolisation was in some sense successful in damaging the blood supply of the tumor - as I remember they said "Dehomogenisation" and I hoped that they meant the dehomogenisation of the tumor, not the lung. The tumor is really big and it causes a lot of problems but at least it doesn't grow?
I Anyways, I do not think that Dr.Vogl would agree to keep doing these chemoembolisations when there is a lot of fluid in the lung.
3. Paula will not be able to fly to Boston - the pleural effusion is an absolute contraindication to a flight as there is at least 20% difference in the pressure in the cabin during the flight and on the ground so any of the air leaks that often accompany the pleural effusion can expand and cause the lung collapse etc. If her Dr. from Boston has anything to say, he can do it over the phone.
4. We discussed the cyber Knife before and you said that by some reason you believed it is not effective. You might be mistaken it with the conventional reg. doze irradiation, most of our patients that had cyberknife or other radiosurgery treatments for their unresectable tumors, have seen at least some degree of success. You might want to consult re. possible treatment for the lymph nodes if the fluid is drained.
My best wishes to Paula and to you, be strong.
Olga
Amanda
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Re: Paula from Poland - Dx 2009

Post by Amanda »

Hello an i am so sorry this is such a ruff time!!!
Yes, i do know another ASPsaitent that had fluid in her lungs i will call her tomorrow and ask her how they removed it. It hurt her also alot an it is very scary! I will try and post back as early tomorrow as i can!

MANIA wrote:I'm writing to update a little bit.
Paulina wanted to fly to Boston this week to see her oncologist there and feel safe in good hands and decide what steps to take next. She has been of any drugs since april, (went through 3 chemoembolization procedures whithin these 3 months).
She had difficulties with breathing since some time and chest pain on the side which got much worse since 3 last weeks.
She was unable to fly though cause she got much worse.
She had an xray of lungs yesterday and stays currently in the hospital
and it was stated that the cause of the breathing problems and pain was a lot of liquid in the left lung. (it was really a big relief that it's not some evil tumor) Has anyone reading/posting here had similar expirience?
Doctors here want to fix it farmacologicaly cause they are a bit afraid of touching the lungs to pull out the liquid in usual way (drainage is the name of the procedure?)
She feels much better in hospital and believes strongly that in one week she will be able to fly to Boston.

We think that breathing problems and liquid in the left lung are side effects of chemoembolization. Since it was not clear to us how Paula benefited from these procedures, no clear plan and side effects she made decision to stop it.
TEMLA procedure is impossible to perform due to advanced tumor changes in Paula's lungs :(
Still hoping to come up with something. Counting on Dana Farber people to help.

I send thousands of good thoughts, thankyous for reading and advising, and healing whishes to all of you.
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
Feng zhou
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Re: Paula from Poland - Dx 2009

Post by Feng zhou »

dear Mania,
1, your Doctors tell you what the nature of pleural effusion is it? as far as I know, ASPS patients are prone to rupture of the tumor, and pleural effusion. In other cancer patients in a common cause of tumor invasion of the pleural, pleural effusion, rare in ASPS patients. the routine examination of leural effusion can identify of pleural hematocele or pleural effusion. Different nature, different treatment

2,More than moderate pleural effusion must be drawn in order to lift the oppression of the lungs. To place the closed thoracic drainage tube, a very simple operation.

3, you said "Doctors here want to fix it farmacologicaly", whether referring to "pleurodesis"?
"Pleurodesis" refers to the use of talc, bleomycin, IL-2 into the pleural cavity, such as the physical stimulation of the pleura, causing extensive pleurisy reaction, induced pleural fibrosis, granuloma formation, so dirty, the formation of parietal pleura fiber simply adhesions, pleurodesis, pleural cavity leading to permanent adhesion closed. Elimination of the pleural cavity to treat pleural effusion. This is commonly used in the uncontrollable malignant pleural effusion method. This approach will lead to significantly reduced lung function.
MANIA
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Re: Paula from Poland - Dx 2009

Post by MANIA »

CT raport translation:
CT scan of the chest toward the pulmonary examination technically difficult to perform because of atelectasis left lung and mediastinal displacement to the left.
The angio-CT study does not indicate filling defects in pulmonary trunk and right and left pleura assessment of their branching impossible because of too little contrast and many changes in the lungs. RIght lung moved and modeled by mediastinal nodal masses.
Total atelectasis of the left lung with presence of a small amount of fluid in the pleural cavity.
Numerous, disseminated various sizes (up to 17 mm) focal changes in the right lung-meta.
huge mass of nodes in the upper mediastinum and middle-m and in the recesses. They cause almost complete
closure of the left main bronchus and pressure or infiltration of the main trunks vessels.

Paulina is in the in a regular city hospital. No oncology, no lung hospital.In Poland due to breathing problems.
Doctors from the hospital where Paula stays said to the family they had no idea of ​​how to help her, they can not do anything better to help than morphine. We are asking for other opinions at the moment since the doctors who said it have absolutely no expirience with ASPS.

Paulina is very strongly fighting to get herself in shape to get to Boston She believes You can help.
It is her biggest hope for this moment.
We want to still ask for a second opinion of another doctor here in Poland.
She is not able to travel normally at the moment at all.
The local doctor here said that the trip may take place only at her own risk with morphine pump hooked up.


But Paula preferes to go to the best doctor she met - who is dr Butrysnki, instead of going to other not asps expirienced doctors here in Poland.
Paula does not want to be hospitalised in polish oncology hospital, (as You remeber In that hospital first attempt to cut the primary out failed ) Paula believes that doctors here will not be able to help her. She doesn't feel safe in their hands.

I want to do everything to help Paulina.
Paulina feels ok but when break in the morphine is too long she feels worse.
Morphine relaxes her.

Please write me a few words, sincere. What do You suggest we do?
What would you do in my place?
With best regards and hope for the reply
Olga
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Re: Paula from Poland - Dx 2009

Post by Olga »

Mania, from the report it seems that there is only small amount of the fluid in the pleural cavity so the drainage is not needed and not going to change anything so they are correct in not doing it. The main problem is the mediastinal nodal mass that blocks her lungs. Look for the best local thoracic surgeon, go speak to him if her could agree to do an emergency debulking - partial resection with the goal of palliation, explain to him that ASPS is a slow growing sarcoma, if they refuse, call Dr.Rolle and talk to him one last time. With the masses of the size like this the radiosurgery is not likely feasible and is not going to provide an immediate relief.
Olga
Amanda
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Re: Paula from Poland - Dx 2009

Post by Amanda »

Hello,
Have you and J talked yet?
I am not sure where the tumors are in her lungs but if they are blocking in the tube maybe this is an option... http://www.cureasps.org/forum/viewtopic.php?f=43&t=656
J had this done and is LOTS better! Tell Paula i am sorry she is hurting an to gain streangth an eat and get to to the US ASAP and get to her Dr that she feels safe with! have you called her Dr here yet? If not call him and have her also talk to him! His voice is a safe place for her ... it helps me when i talk to my oncs so I hope it will with her.. Hug her tell her its another hill and she has climbed many and this is just one more and to stay strong and positive! Both of you are amasing wonderful strong woman! Little steps and soon she will i hope be strong enough to fly here. As for the pain it is very important that it be managed! Pain equales stress and stress is problems...
Mania rest also please i know it is hard but if you fall ill from all this she will feel very bad! Also she needs you.. Rest eat and water.. i hate it that we are all so far apart!
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
MANIA
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Re: Paula from Poland - Dx 2009

Post by MANIA »

Hi
Paula is feeling so... so. Still making jokes, but also in pain, and in breathing problems.
Talking morphhine 1.5 ml/h and oxygen. Not all the time.
Amanda J didn't answer. Thank You for your great words. what a spirit You have. This really helps You know :)

Huge thanks for replies.
Olga - You are 100% right. Thank You for the dr Rolle suggestion I will send him a cd with CT I think.

The local local thoracic surgeon which we saw today is weighing his options if he will try. He is willing to help, but also aware of very very very risky surgery.
First he will perform Bronchoscopy (I think to see how will the lung react for streamlining the bronchus)
and will make the decision if he will go on with surgery in few days.
We are waiting for a place for Paula in the hospital where thoracic surgeon is. (There is too many people to fit in this hospital)
Olga
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Re: Paula from Poland - Dx 2009

Post by Olga »

You need the best thoracic surgeon locally you can find, the experience with ASPS does not matter now. Even Dr.Rolle's laser assisted surgery has no advantage here as well, I am suggesting him just because he is a great thoracic surgeon overall and is familiar with the case and is a very compassionate person. But the surgeon close to home might be better now as I do not know how are you going to transport Paula even to Cowsig. Hard for her and there should be at least one good general thoracic surgeon locally as well.
Olga
Bonni Hess
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Re: Paula from Poland - Dx 2009

Post by Bonni Hess »

Dear Mania,
I am so sorry to have not responded sooner but I have been away from the computer busy with wedding preparations and events for our middle son's wedding which was this past weekend. I am so very sad and concerned about dear Paula's hospitalization and all of her breathing problems and pain from her lung mets. I am grateful that you have found a local thoracic surgeon who is willing to at least consider surgery to help reduce the amount of tumor blockage, and I will be anxiously awaiting your next update regarding his decision and also what Dr. Rolle's response is to your request for him to review Paula's most recent CT scans. I know that Paula and you must be very discouraged and frightened right now, but try to stay strong and hold tight to Hope that surgery will be possible to remove or at least reduce the size and number of the blocking tumors so that Paula can be able to breath much better and then move forward with a new systemic treatment to try to shrink and destroy the remaining mets. Please feel my arms reaching out to embrace and gently hug you and dear Paula, and know that I am continuing to hold both of you and your family very close in my heart and most caring thoughts.
Heart to heart with deepest caring, healing wishes, and continued Hope,
Bonni
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