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

[Amanda]

Hi Mania,
After reading what you have said i agree 100% with Olga she needs to be worked on as soon as possible where she is.
Transporting her will be hard an it can also be very hard on her!
I dont think getting in a plane is a good idea at all! I have moved paitents an this will need more then a medic an I dont like the risk factor! If it is even possible...
It is a MUCH better idea what Olga said to do there for her own safty also in reference to transportating..
Speak with the surgen there tell him there are a few doctors here that will talk to him i will call mine if need be an i am sure doctor to doctor will help him decide what needs to be done!
I am praying that this is done fast so she is not having any problems and that her usual strength will get her healed enough get further treatments done in the US or where ever you two decide...

J looked and didnt see an e mail I will let her know you did mail her. She is also having some pain so maybe that is also why no reply yet. She does want to talk to you two

I would call Dr Rolle an talk to him and also send a CD no waiting please ... The feeling short of breath i have had and it just plain sucks ...

Sending *hugs to you both* Its so hard we are all so far apart in distance.. The good is we are all close in out hearts! In some forms i am there with you two and know i wish i was there to be there for you both! At least we have the forums to talk in to help and vent..

[Ivan]

Mania, keep trying, and don't feel discouraged. I hope you will find a workable solution soon!

[Amanda]

Thinking about you two and hoping all is going well.. post soon please so we know how every thing is going...

[MANIA]

Paula is now in Lung specialised hospital in Poland, not feeling down, still dreaming of going to the US and being taken care of by miraclemakers. On tuesday local doctors will perform bronchoscopy, we will see where will we go from there.

I consulted PDT procedure (which J _ Amanda's friend had) with polish doctors, and they said for Paula PDT is not an option since her biggest problems are medinastanal lymphnodes and PDT works for something that's inside lungs or airways.

Dr Rolle from germany was sorry to be not able to give us treatment option. He said the ASPS tumor was in general very difficult to treat, we have tried all modalities from surgery to chemotherapy and finally embolisation. He didn`t believe that Paula would have a benefit from a debulking operation because there were too much tumor masses on both lungs and the mediastinum.

Another doctor I consulted from Poland suggested radiotheraphy.

[Amanda]

Hi Mania,
Thank you for posting back you two have been on my mind alot! I am glad she is in a hospital for the lungs!
Have you two asked if and when she can come ot the US an is her doctor here in the US talking to the doctors there?
I know they remove the medinastanal lymphnodes in stage 1 an 2 cancer have they thought about doing some thing with them or can they?
Please, hug her and have mer hug you for me... Please, post back when you can even if it is because you just need to talk!

[MANIA]

Hello
Paula went through surgical intervention yesterday aiming to
reopen left lung (which had collapsed).
They managed to clear the airway to the left bronchus, so that the lung has started to work. Partially. The procedure will be repeated next week (scheduled Monday), but much depends on how Paula feels.
They went through her mounth (like bronchoscopy is made) It went all good, they burned tumors which were inside the airways with laser.
Surgeons were very carefull and afraid of severe bleeding, so with big caution they decided to stop at some point, and repeat same procedure in few days if Paula feels good. Paula is going back to herself, and feeling rather good. She is very happy that professor with great experience has taken care of her, his good intentions made her feel safe.
big hugs to all of You

[Olga]

Mania, thank you very much for keeping us up to date. The procedure of airways decompression using lower frequency laser in order to reduce the endobronchial tumors is often used in lung cancer but we have not heard about it used in ASPS because it is rare that we see the endobronchial invasion of ASPS lung mets in our patients. I hope that Paula gets better to be able to participate in a clinical trial or to have other systemic treatment, although the mediastinal lymph nodes are still untreated and they are very large. Did you have a chance to talk to that professor re. any treatment options for these nodules, anything to reduce them?
About the systemic treatment options. I am not sure if you have seen that we had a case with gemcitabine being used with success to treat metastatic ASPS in one of our patients, this drug is readily available in all countries and it is approved to treat diff. cancers. Its toxicity is different between the people but mostly it is easier then many other chemo drugs.

[MANIA]

I know there are some people here waiting for update about Paula.
My beloved sister, great cancerwarior passed away. She died in the lunghospital. She fought a very very very long and awefull battle, especially during last 4 weeks.
Now in a deep sadness I'm writing You to give You my biggest respect and gratitude for being with us through our battle. Although she never wrote here herself, she always asked about forum, and told me what questions to ask from You.
We are devastated. It is extremely hard to share such a sad news, but I think you would want to now.
Paulina Pruska (July 25 1985 - August 31 2011) rest in peace, dearest beloved great sis.

[Olga]

Mania, I feared that this would be your next message after we have not heard from you for a while, given the very advanced disease in Paula's lungs...I am so sorry to hear that and there is only one consolation available now that is really true - she is now resting in piece without the pain she had to endure the last months. I hope that she had received a good palliative care at that lung hospital to easy her suffering. Thank you for being a great sister by Paulina's side in this journey, have a good life for both of you.

[Bonni Hess]

Dearest Mania,
It is with great shock, numbing grief, the most profound sorrow, and the endless tears that I just read your devastating update. I am deeply humbled by your having been able to somehow find the emotional and physical strength to write to share this immensely tragic news with all of us who have followed dear Paula's incredibly courageous ASPS battle through your faithful Board updates. Although I didn't have the opportunity and privilege to personally meet Paula and you, I feel that I have come to know both of you through your dedicated sharing. The depth of your sisterly commitment to, and love for each other has been so beautifully reflected and expressed in your writing. Surely dear Mania, all that love could do for your beloved Paula was done by you through your dedicated research, networking, pursuance of medical care and treatments, and constant support and encouragement. I know far too well having suffered the devastating loss of our beloved oldest son that there are no words that can take away the endless pain in your broken heart, but please know how deeply I share the immensity of your sorrow, and that my deepest sympathy, caring, and love are with you and your dear family. The eternal legacy of dear Paula's invincible courage, undeterred determination, and positive spirit will continue to inspire and lead all of us as we continue the very challenging battle with this insidious disease that has now so tragically taken her from this World, but can never take her from our special memories and our hearts.
Holding your precious angel Paula, you, and your dear family very close in my aching heart and most caring thoughts, and deeply sharing your profound sorrow and devastating loss with my deepest sympathy and love,
Bonni

[DottyW]

Dear Mania,
Thank you for bravely sharing the news of Paula's passing with the forum. We all feel like we know each other through the shared struggles of this evil disease.
How blessed Paula was to have such a loving siste!. I pray that God will wrap His loving arms around you and your family and friends as you grieve the loss of your strong, courageous sister. We all feel some of your grief although we cannot know the deep loss you will feel in the coming months. Paula fought a tough fight and gave it all she had. None of us are gauranteed tomorrow so we must love each other daily with all that we have. You showered her daily with your love by fighting this battle along side her and doing everything in your power to get her the best care possible.
God bless you for your faithfulness to your sister,
Dotty

[Amanda]

Dear paula rest no more pain only peace..
Mania *hug* I am so sad reading this news an fighting back tears! I know what you are feeling like having lost three that meant the world to me also to cancer! I hope that if and when you need to talk you post here in the thread I know she would want everyone to be there for you an I am if needed any time of the forumsaround ot talk to! Sadly when it gets as far as it had the pain and emotions are very hard and when it is realised that it will not be better this is peace. I know no one wants to say this but it is very true. Also for her i am sure it was very hard to see you an others hurt and i am sure she wanted you in the sun an having fun and laughing an not dealing with all of this .. Though your being there was her world I know right now tears are not what she wants for you even if it is hard to do so in time soon celibate her an no tears will be there in the room only happiness... I am proud of you an your heart and strength and love that you shed about Paula and to all of us dealing with this cancer you are special. Where ever your feet land may your heart and mind be content an may you receive the love that is special to a amassing person like you!
May what ever god you hold stand with you and hold you while this god is also holding Paula an teach you agan to smile..

Love to you and your whole family!