Mania - thank you for an update.
Is Dr.Vogl going to have the second step of this treatment - an ablation of the nodule after a week or 2? Did he say anything about it? how was her overall impression from Dr.Vogl and hospital overall?
if you guys are looking into resection - why don't you consult Dr.Rolle, he is the best choice for resection using laser and he is in Dresden, it is safer then needing to fly overseas back home after the surgery is done. After the surgery there is a chance for an airleak and lung collapse during the flight so she would need to stay for at least 2 weeks after the surgery. Have you seen an answer from Feng Zhou - who is a doctor from China and the parent of the boy with ASPS, they send the scans to Dr.Rolle (and he did not take this boy for now) but at least they did consult him. If you consult him, I suggest to tell him upfront that you are trying to get these resected and will be looking for other surgeons in China if Dr.Rolle won't take Paula - it may persuade him that in Paula's interests it is better for him to do it using laser then for other surgeon to perform an attempt to do that having no laser in hands. Laser assisted resection saves a lot of lung tissue and this is the best type of the lung surgery one can have.
This is the article to read to broaden the understanding of the subject:
http://journals.lww.com/jto/Fulltext/20 ... omy.6.aspx
She can do a self referral to Dr.Rolle but Dr.Vogl can formally refer her too.
Paula from Poland - Dx 2009 - RIP 31/08/2011
Re: Paula from Poland - Dx 2009
Hi Mania
I'm glad to hear Paula tolerated it fairly well.
Can you describe the embolization procedure itself? Is it intravenous? Was there anesthesia?
Finally, how many nodules were embolized and are going to be ablated?
Edit: fixed names
I'm glad to hear Paula tolerated it fairly well.
Can you describe the embolization procedure itself? Is it intravenous? Was there anesthesia?
Finally, how many nodules were embolized and are going to be ablated?
Edit: fixed names
Re: Paula from Poland - Dx 2009
I wasn't there with Paula so I didn't see the procedure. But I write what I know from her telling me: dr Vogle starts through the vein in thigh, and on monitor he watches how the chemo is going where he planned it to go. That's basically it. THen Paula had to wait still for 3 hours. After these 3 hours they performed CT scan.
To answer Olga's and Iwan's other question:
Dr Vogle treats all of the nodules as a whole
and his treatment plan for Paula is 3 to 4 procedures
he is planning to embolize her 1 or 2 more times
and then make ablation with microwave or some other heat
He didn't seem to need to count nodules exactly. Because when she asked 'how many tumors he sees" he answered 'couple of tumors' So I can't answer that exactly.
They used local anesthesia.
Paula has a haematoma in her thigh, and that's the only side effect visible now. The scar is very small, only one stich.
Her impression from Dr Vogl's hospital was ok. She says she feels safer now. SHe sends You hugs.
Olga, CT scans are on they way to dr Rolle. Paula sent them today, I didn't know she did it that's why I didn't write. We want to use many pararel options, and then choose the best one. Yes I saw the post of that chinese doctor, which is weird to me and confused me. BUt I don't want to judge here. We love dr Rolle although we did speak to him once. I will give Paula Your suggestion Olga. Thank You.
Iwan, Paula is ASPS patient, I'm Mania her sister
if You have some questions which I didn't answer go ahead, I'll pass them on to Paula.
To answer Olga's and Iwan's other question:
Dr Vogle treats all of the nodules as a whole
and his treatment plan for Paula is 3 to 4 procedures
he is planning to embolize her 1 or 2 more times
and then make ablation with microwave or some other heat
He didn't seem to need to count nodules exactly. Because when she asked 'how many tumors he sees" he answered 'couple of tumors' So I can't answer that exactly.
They used local anesthesia.
Paula has a haematoma in her thigh, and that's the only side effect visible now. The scar is very small, only one stich.
Her impression from Dr Vogl's hospital was ok. She says she feels safer now. SHe sends You hugs.
Olga, CT scans are on they way to dr Rolle. Paula sent them today, I didn't know she did it that's why I didn't write. We want to use many pararel options, and then choose the best one. Yes I saw the post of that chinese doctor, which is weird to me and confused me. BUt I don't want to judge here. We love dr Rolle although we did speak to him once. I will give Paula Your suggestion Olga. Thank You.
Iwan, Paula is ASPS patient, I'm Mania her sister
if You have some questions which I didn't answer go ahead, I'll pass them on to Paula.
Re: Paula from Poland - Dx 2009
Mania - thank you for the response. So much very useful first hand info about these new treatment options! To clarify a little - Dr.Vogl can not treat all nodules as a whole as his procedures are essentially local treatments - he just picked the ones that he considered to be the most dangerous in the short term and embolised their feeding blood vessels, so he really does not need to count the smaller ones as his goal is to target the bigger ones that he is going to work with. It is really fascinating that they enter the vein in the thigh and go all the the lung trough the veins.
He does local ablations for the tumors in all possible locations so generally he is a very good option for the quick fix situations - even though he only deals with a few mets it buys the patient a time to look for other treatment options - especially if there are few mets that are progressing faster for example after getting off some drug with the resistance developed.
I was smiling about your reaction on the Feng Zhou post - it is very difficult to learn Engl for the people with the first language from the Asian group and since you didn't know that it is the post from the parent of another ASPS patient that should be looking weird..They do not post on the board but they are in contact with some of us directly and are currently very busy dealing with their son's numerous problems and I wish them the best and appreciate this inside info about this hospital.
He does local ablations for the tumors in all possible locations so generally he is a very good option for the quick fix situations - even though he only deals with a few mets it buys the patient a time to look for other treatment options - especially if there are few mets that are progressing faster for example after getting off some drug with the resistance developed.
I was smiling about your reaction on the Feng Zhou post - it is very difficult to learn Engl for the people with the first language from the Asian group and since you didn't know that it is the post from the parent of another ASPS patient that should be looking weird..They do not post on the board but they are in contact with some of us directly and are currently very busy dealing with their son's numerous problems and I wish them the best and appreciate this inside info about this hospital.
Olga
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula from Poland - Dx 2009
Dear Mania,
I am so very appreciative of your thoughtful updates and the valued shared information regarding Paula's chemoembolization procedure. I am so grateful that the procedure went well, and that Paula is now feeling better after suffering two days of negative side effects. You said that Dr. Vogl is planning to do another 1-2 emboliizations before ablating the tumors, and I am wondering what kind of a time frame is involved between embolizations, and then again between the last embolization and the ablation?
I am so sorry and perplexed about Dr. Butrynski's lack of response to your attempts to communicate and consult with him regarding Dr. Vogl's treatment chemoembolization/thermal ablation treatment plan for Paula. Based on our very positive experience with Dr. Butrynski when he was treating Brittany, his being non-responsive seems very out of character for him as we found him to be extremely dedicated and always responsive to our phone calls and e-mails. I am wondering if he is perhaps out of the office traveling or not feeling well, although I would assume that his receptionist or nurse would tell you if that is the situation. Perhaps you can contact Dr. Butrynski's two other patients/family members from this Board (Jessie, and Wendy who is Matt's mother), and send them a private message to find out if they have been in contact with Dr. Butrynski recently.
My best wishes and most postive thoughts are with Paula for a very successful response to, and good recovery from, her chemoembolization procedure(s). I will be anxiously awaiting your next update, and continuing to hold both of you very close in my heart and thoughts.
Reaching out across the miles with special hugs, deepest caring, healing wishes for Paula, and continued Hope,
Bonni
I am so very appreciative of your thoughtful updates and the valued shared information regarding Paula's chemoembolization procedure. I am so grateful that the procedure went well, and that Paula is now feeling better after suffering two days of negative side effects. You said that Dr. Vogl is planning to do another 1-2 emboliizations before ablating the tumors, and I am wondering what kind of a time frame is involved between embolizations, and then again between the last embolization and the ablation?
I am so sorry and perplexed about Dr. Butrynski's lack of response to your attempts to communicate and consult with him regarding Dr. Vogl's treatment chemoembolization/thermal ablation treatment plan for Paula. Based on our very positive experience with Dr. Butrynski when he was treating Brittany, his being non-responsive seems very out of character for him as we found him to be extremely dedicated and always responsive to our phone calls and e-mails. I am wondering if he is perhaps out of the office traveling or not feeling well, although I would assume that his receptionist or nurse would tell you if that is the situation. Perhaps you can contact Dr. Butrynski's two other patients/family members from this Board (Jessie, and Wendy who is Matt's mother), and send them a private message to find out if they have been in contact with Dr. Butrynski recently.
My best wishes and most postive thoughts are with Paula for a very successful response to, and good recovery from, her chemoembolization procedure(s). I will be anxiously awaiting your next update, and continuing to hold both of you very close in my heart and thoughts.
Reaching out across the miles with special hugs, deepest caring, healing wishes for Paula, and continued Hope,
Bonni
Re: Paula from Poland - Dx 2009
Dr. Butrynski's lack of response continues, I feel very disapointed. Paula feels left out, it sucks. We are looking for another best doctor closer. If anyone reading this knows how to contact prof Judson from Marsden clinic in London please be so kind and share it with us.
Bonnie, the time frame between embolizations is 4 weeks.
First news from China is what we already know, but confirmed and worrying:
"the place of the tumor is very difficult to give treatment - very close to the big ateria, and to the heart - but the main problem is that the tumor is around both tracheal to the lung"
No China then.
I am preparing to hear another 'no possibility' from another doctors. It's heartbreaking.
Paula's friend wrote beautyfull letter to her I leave You with a quote:
"We don't know the mystery of why you have this challenge and you are meeting it with courage and sincerity."
Bonnie, the time frame between embolizations is 4 weeks.
First news from China is what we already know, but confirmed and worrying:
"the place of the tumor is very difficult to give treatment - very close to the big ateria, and to the heart - but the main problem is that the tumor is around both tracheal to the lung"
No China then.
I am preparing to hear another 'no possibility' from another doctors. It's heartbreaking.
Paula's friend wrote beautyfull letter to her I leave You with a quote:
"We don't know the mystery of why you have this challenge and you are meeting it with courage and sincerity."
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula from Poland - Dx 2009
Dear Mania,
I continue to be very sorry and perplexed by Dr. Butrynski's inexplicable lack of response to you and Paula, and my heart breaks for the concerning and discouraging response that you received from China. I am confused about Dr. Vogl's treatment plans, but I thought that you had indicated that he said that he WILL be able to ablate the concerning lymph node and lung mets following the chemoembolization procedures. If Dr. Vogl is able/planning to do the procedure, then I guess that I am unsure about why you are searching for another doctor/facility to treat Paula's dangerously located lymph node and lung mets, so could you please clarify that for me when your time allows?
Dr. Ian Judson's phone number in England is (020) 8722 4303 and his e-mail address is ian.judson@icr.ac.uk We contacted him in the past regarding his previous and now closed Phase 1 Cediranib Clinical Trial, and he was very prompt, kind, and helpful in his response to us. You can find his picture and more information about him on the Internet just by doing a search of his name.
Thank you for sharing the beautiful quote from Paula's friend which is so very true for dear Paula and all of the ASPS patients who are battling this insidious disease with so much strength and courage.
Please take care dear Mania, hold very tight to Hope. and keep the Board updated as you are able.
Heart to heart with special caring thoughts, healing wishes for Paula,and continued Hope,
Bonni
I continue to be very sorry and perplexed by Dr. Butrynski's inexplicable lack of response to you and Paula, and my heart breaks for the concerning and discouraging response that you received from China. I am confused about Dr. Vogl's treatment plans, but I thought that you had indicated that he said that he WILL be able to ablate the concerning lymph node and lung mets following the chemoembolization procedures. If Dr. Vogl is able/planning to do the procedure, then I guess that I am unsure about why you are searching for another doctor/facility to treat Paula's dangerously located lymph node and lung mets, so could you please clarify that for me when your time allows?
Dr. Ian Judson's phone number in England is (020) 8722 4303 and his e-mail address is ian.judson@icr.ac.uk We contacted him in the past regarding his previous and now closed Phase 1 Cediranib Clinical Trial, and he was very prompt, kind, and helpful in his response to us. You can find his picture and more information about him on the Internet just by doing a search of his name.
Thank you for sharing the beautiful quote from Paula's friend which is so very true for dear Paula and all of the ASPS patients who are battling this insidious disease with so much strength and courage.
Please take care dear Mania, hold very tight to Hope. and keep the Board updated as you are able.
Heart to heart with special caring thoughts, healing wishes for Paula,and continued Hope,
Bonni
Re: Paula from Poland - Dx 2009
It is probably some kind of ethical problem for Dr.Butrynski as he is asked to recommend or rule out a treatment that he knows very little about and there are very few published articles to provide for/or against arguments. There are very few docs in the world that perform TPCE and even less that have a substantial experience to expect it to be effective or not in ASPS. But I would expect him to say just that - that he can not comment on this treatment.
The plan that Dr.Vogl has looks to be to perform one or few more embolizations and to see if the tumor shrinks well enough to get off the tracheal tubes and blood vessels. Then it can be ablated or resected. He probably does not know that before he sees the CT scan after few weeks following the embolization. I am wondering if Paula let Dr.Rolle know about this procedure done and if the scan she sent to him is done before or after the procedure. It would look bigger now immediately after the procedure and should start to shrink later.
The other good option to consult re. systemic treatment options or clinical trials in Europe is:
Andrea Ferrari, MD, Pediatric Oncology Unit, Fondazione Istituto di Ricovero e Cura a Carattere Scientifico Istituto Nazionale
Tumori, Via G. Venezian 1, 20133 Milano, Italy;
e-mail: andrea.ferrari@istitutotumori.mi.it.
She speaks Engl. very well and she was the chair of the EORTC Soft Tissue and Bone Sarcoma Group in the past. The chairs are usually the most experienced sarcoma oncologists in Europe (Ian Judson served as its chair as well in the past).
The current Chairman of this group is:
Peter Hohenberger
Division of Surgical Oncology and Thoracic Surgery,
Department of Surgery, University Hospital Mannheim, University of Heidelberg
Theodor Kutzer Ufer, D-68135 Mannheim, Germany
tel.: +49-6 21-3 83-26 09 / 22 26
fax: +49-6 21-3 83-21 66
E-mail: hohenberger@sarkome.de
You can consult him as well.
The plan that Dr.Vogl has looks to be to perform one or few more embolizations and to see if the tumor shrinks well enough to get off the tracheal tubes and blood vessels. Then it can be ablated or resected. He probably does not know that before he sees the CT scan after few weeks following the embolization. I am wondering if Paula let Dr.Rolle know about this procedure done and if the scan she sent to him is done before or after the procedure. It would look bigger now immediately after the procedure and should start to shrink later.
The other good option to consult re. systemic treatment options or clinical trials in Europe is:
Andrea Ferrari, MD, Pediatric Oncology Unit, Fondazione Istituto di Ricovero e Cura a Carattere Scientifico Istituto Nazionale
Tumori, Via G. Venezian 1, 20133 Milano, Italy;
e-mail: andrea.ferrari@istitutotumori.mi.it.
She speaks Engl. very well and she was the chair of the EORTC Soft Tissue and Bone Sarcoma Group in the past. The chairs are usually the most experienced sarcoma oncologists in Europe (Ian Judson served as its chair as well in the past).
The current Chairman of this group is:
Peter Hohenberger
Division of Surgical Oncology and Thoracic Surgery,
Department of Surgery, University Hospital Mannheim, University of Heidelberg
Theodor Kutzer Ufer, D-68135 Mannheim, Germany
tel.: +49-6 21-3 83-26 09 / 22 26
fax: +49-6 21-3 83-21 66
E-mail: hohenberger@sarkome.de
You can consult him as well.
Olga
Re: Paula from Poland - Dx 2009
Olga
thank You for contacts this is very valuable.
We got an answer from dr Rolle
" I am sorry to give the statement that the bilateral metastases
are now inoperable because they have confluated, show lymphatic vessel
infiltration and have also infiltrated the hilum of the lungs
bilaterally. I think you will continue with chemoembolisation.
I wish you the best, perhaps you can inform me about the further
course of your disease."
greetings to all of You
thank You for contacts this is very valuable.
We got an answer from dr Rolle
" I am sorry to give the statement that the bilateral metastases
are now inoperable because they have confluated, show lymphatic vessel
infiltration and have also infiltrated the hilum of the lungs
bilaterally. I think you will continue with chemoembolisation.
I wish you the best, perhaps you can inform me about the further
course of your disease."
greetings to all of You
Re: Paula from Poland - Dx 2009
Mania, I am so sorry to hear that.
There are 2 cases described by our patients when unresectable lung metastases were treated by the systemic chemotherapy. One case (Sarah case) is particularly interesting as there were very multiple lung metastases and the chemo drug that was used - gemcitabine continuously (Gemzar in US) is approved and very widely used in other cancers and is available everywhere incl. Poland. Read the case in the Success stories, may be it worth trying. The doctor that she had on that clinical trial is now world-renowned lung cancer specialist. She worked at the University of Kansas Cancer Center as a deputy director and now works at the UC Davis Cancer Center here:
http://www.ucdmc.ucdavis.edu/search/fac ... chlist=yes
if you want to ask her for a confirmation of the case or want to give this info to your local oncologist or when you ask an opinion from any of the sarcoma experts.
Or look for a new clinical trial.
There are 2 cases described by our patients when unresectable lung metastases were treated by the systemic chemotherapy. One case (Sarah case) is particularly interesting as there were very multiple lung metastases and the chemo drug that was used - gemcitabine continuously (Gemzar in US) is approved and very widely used in other cancers and is available everywhere incl. Poland. Read the case in the Success stories, may be it worth trying. The doctor that she had on that clinical trial is now world-renowned lung cancer specialist. She worked at the University of Kansas Cancer Center as a deputy director and now works at the UC Davis Cancer Center here:
http://www.ucdmc.ucdavis.edu/search/fac ... chlist=yes
if you want to ask her for a confirmation of the case or want to give this info to your local oncologist or when you ask an opinion from any of the sarcoma experts.
Or look for a new clinical trial.
Olga
Re: Paula from Poland - Dx 2009
Hello
I want to update Paula's current situation.
She continues with chemoembolization she hasn't been taken any drugs since cediranib , she had her scans on last tuesday (june 14th).
Tumors in lymphnodes are stable, mets in lungs showed slight growth, and what's more important brain is clear!
When I have an official report from dr Vogle I post it here for sure.
Dr. Vogle will continue with chemoembolization for 2 more times.
We were expecting much worth CT scans results, so the news made us very happy.
She has permanent cough, which we think is cause of lymphnodes tumors.
She thinks seriously to go for sorafenib treatment as her next step.
Dr Butrynsky answered finally.
I will be back with more when I get a report .
very big greetings
I want to update Paula's current situation.
She continues with chemoembolization she hasn't been taken any drugs since cediranib , she had her scans on last tuesday (june 14th).
Tumors in lymphnodes are stable, mets in lungs showed slight growth, and what's more important brain is clear!
When I have an official report from dr Vogle I post it here for sure.
Dr. Vogle will continue with chemoembolization for 2 more times.
We were expecting much worth CT scans results, so the news made us very happy.
She has permanent cough, which we think is cause of lymphnodes tumors.
She thinks seriously to go for sorafenib treatment as her next step.
Dr Butrynsky answered finally.
I will be back with more when I get a report .
very big greetings
Re: Paula from Poland - Dx 2009
Mania, thank you for an update. After any of the interventinal procedures - local percutaneous ablation, embolisation etc. when the tumor is not removed but damaged and left in place, it looks bigger on a follow up scans due to a local inflammation, it is seen even up to 6-12 months after it is dead so this is a technical problem to see if it is growing or is dying. I am sure that Dr.Vogl can sort it out by the scans. Has Paula asked him about to consult. with the local sarcoma oncologist from Frankfurt and if they have any clinical trials for sarcoma there that might be suitable? There are second generation TKI on trials now and they might be more active than sorafenib?
Re. sorafenib - there are 3 tyrosine kinase inhibitors (TKIs) sorafenib, sunitinib, and pazopanib are approved by the US Food and Drug Administration for the treatment of advanced RCC and technically all of these can be tried in ASPS if there is a doctor willing to prescribe them off label. Paula already had sunitinib, so she can obviously try sorafenib and pazopanib.
This is the link to a review article from this year ASCO about targeted therapies:
Antiangiogenesis in Refractory Solid Tumors in Children: Dosing, Pharmacodynamic Biomarkers
http://chicago2011.asco.org/ASCODailyNews/9501.aspx
"Reduction in tumor mass using Response Evaluation Criteria in Solid Tumors (RECIST) occurred in one patient with hepatoblastoma and one with refractory alveolar soft part sarcoma."
the source article about Pazopanib is here:
http://abstract.asco.org/AbstView_102_83283.html
Re. sorafenib - there are 3 tyrosine kinase inhibitors (TKIs) sorafenib, sunitinib, and pazopanib are approved by the US Food and Drug Administration for the treatment of advanced RCC and technically all of these can be tried in ASPS if there is a doctor willing to prescribe them off label. Paula already had sunitinib, so she can obviously try sorafenib and pazopanib.
This is the link to a review article from this year ASCO about targeted therapies:
Antiangiogenesis in Refractory Solid Tumors in Children: Dosing, Pharmacodynamic Biomarkers
http://chicago2011.asco.org/ASCODailyNews/9501.aspx
"Reduction in tumor mass using Response Evaluation Criteria in Solid Tumors (RECIST) occurred in one patient with hepatoblastoma and one with refractory alveolar soft part sarcoma."
the source article about Pazopanib is here:
http://abstract.asco.org/AbstView_102_83283.html
Olga
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula from Poland - Dx 2009
Dear Mania,
It was very good to hear from you and I am so appreciative of your thoughtful update. I am so grateful that Paula's last week's scans were relatively good with no new tumors and stability of her mets with the exception of some possible slight growth of her lung mets. I Hope that she is tolerating the chemoembolization procedures well with no negative side effects, and that she is feeling good except for her chronic cough which will Hopefully resolve when the lymphnode mets are resolved. Is Sorafenib being recommended by Dr. Butrynski, Dr. Vogle, or other oncologists, and if Paula does pursue it as a systemic treatment, where will she be treated with it? You may or may not know that LCMA who previously updated on this Board underwent treatment with Sorafenib during this past year, but unfortunately she developed progression after six months and it was not very successful for her in terms of having any significant tumor shrinkage and a more sustained response. Of course, each patient is different and each patient may have a different response to the same drug as has happened with Cediranib, but I think that it would be advisable for you and Paula to try to obtain some research and anecdotal data substantiating the potential for a successful response for ASPS patients to Sorafenib as you continue to explore and discuss various systemic treatment options with the oncologists. I will be anxiously awaiting your next update, and continuing to hold Paula and you very close in my heart and my most caring thoughts. Take care.
With special hugs for both you and Paula, deepest caring, healing wishes for Paula, and continued Hope,
Bonni
It was very good to hear from you and I am so appreciative of your thoughtful update. I am so grateful that Paula's last week's scans were relatively good with no new tumors and stability of her mets with the exception of some possible slight growth of her lung mets. I Hope that she is tolerating the chemoembolization procedures well with no negative side effects, and that she is feeling good except for her chronic cough which will Hopefully resolve when the lymphnode mets are resolved. Is Sorafenib being recommended by Dr. Butrynski, Dr. Vogle, or other oncologists, and if Paula does pursue it as a systemic treatment, where will she be treated with it? You may or may not know that LCMA who previously updated on this Board underwent treatment with Sorafenib during this past year, but unfortunately she developed progression after six months and it was not very successful for her in terms of having any significant tumor shrinkage and a more sustained response. Of course, each patient is different and each patient may have a different response to the same drug as has happened with Cediranib, but I think that it would be advisable for you and Paula to try to obtain some research and anecdotal data substantiating the potential for a successful response for ASPS patients to Sorafenib as you continue to explore and discuss various systemic treatment options with the oncologists. I will be anxiously awaiting your next update, and continuing to hold Paula and you very close in my heart and my most caring thoughts. Take care.
With special hugs for both you and Paula, deepest caring, healing wishes for Paula, and continued Hope,
Bonni
Re: Paula from Poland - Dx 2009
Hello
I'm assisting Paula during her third chemoembolisation in Franfkurt.
Tomorrow we are seeing dr Vogle, for last procedure of chemo, and in one month he is going to ablate the tumors.
Paula overall condition would be excellent accept her caughf. As we arrived in Franfkurt something new appeared which is chest pain on the right side, which tends to get stronger while P inhales. It's so hard to tell if this is the disease or chemoembolization side effects.
Here is translated rapport from imaging done in Frankfurt last month ( 1. MRI is before the chemoembolization procedure #2 2.CT is done after procedure, ):
1.
"MRT Thorax native (magnetic resonance tomography of the thorax, native, June 14th, 2011): Images from the previous study (May 12th, 2011) are available for comparison. Present magnetic resonance tomography: paratracheal lymph nodes measuring 10 mm in diameter. Flat tumour in the anterior mediastinum, infiltrating, present diameter 30 mm. Infiltration of the pulmonary trunk measuring 25x30 mm*. Infiltration of the large area, right-sided, parahilar infiltration. The hilar lymph nodes seem stabile. Moderate activity pattern in the area of mesenteric lymph nodes, infiltrating. The displacement of the surrounding structures. Dehomogenisation. Fortunately, no certain features of de novo lesions. Result: 1. High level of activity – mediastinum, hila, lungs.
2.
CT Thorax native (computed tomography of the thorax, native, June 14th, 2011): Findings: The current diagnostics methods using computed tomography revealed paratracheal lymph nodes measuring up to 10 mm in diameter, right-sided hilar lymph nodes. Flat, intrapulmonary tumour bilaterally infiltrating hilar area. Compression. Impaired pulmonary aeration, right-sided infiltration. High level of activity, hilar, bilaterally. Result: 1. Bilateral lung metastases."
Regarding other treatment, Paula wants to finish dr Vogle procedures first and then go for something. What will it be excactly she doesn't know at the moment, it is hard to decide. Dr Butrynsky suggested sorafenib after he understood that P would have to pay for trial of Crizotinib herself (which was his first choice).
We are sending a lot of summer sunbeams to all of You. Please stay with us in your thoughts.
I'm assisting Paula during her third chemoembolisation in Franfkurt.
Tomorrow we are seeing dr Vogle, for last procedure of chemo, and in one month he is going to ablate the tumors.
Paula overall condition would be excellent accept her caughf. As we arrived in Franfkurt something new appeared which is chest pain on the right side, which tends to get stronger while P inhales. It's so hard to tell if this is the disease or chemoembolization side effects.
Here is translated rapport from imaging done in Frankfurt last month ( 1. MRI is before the chemoembolization procedure #2 2.CT is done after procedure, ):
1.
"MRT Thorax native (magnetic resonance tomography of the thorax, native, June 14th, 2011): Images from the previous study (May 12th, 2011) are available for comparison. Present magnetic resonance tomography: paratracheal lymph nodes measuring 10 mm in diameter. Flat tumour in the anterior mediastinum, infiltrating, present diameter 30 mm. Infiltration of the pulmonary trunk measuring 25x30 mm*. Infiltration of the large area, right-sided, parahilar infiltration. The hilar lymph nodes seem stabile. Moderate activity pattern in the area of mesenteric lymph nodes, infiltrating. The displacement of the surrounding structures. Dehomogenisation. Fortunately, no certain features of de novo lesions. Result: 1. High level of activity – mediastinum, hila, lungs.
2.
CT Thorax native (computed tomography of the thorax, native, June 14th, 2011): Findings: The current diagnostics methods using computed tomography revealed paratracheal lymph nodes measuring up to 10 mm in diameter, right-sided hilar lymph nodes. Flat, intrapulmonary tumour bilaterally infiltrating hilar area. Compression. Impaired pulmonary aeration, right-sided infiltration. High level of activity, hilar, bilaterally. Result: 1. Bilateral lung metastases."
Regarding other treatment, Paula wants to finish dr Vogle procedures first and then go for something. What will it be excactly she doesn't know at the moment, it is hard to decide. Dr Butrynsky suggested sorafenib after he understood that P would have to pay for trial of Crizotinib herself (which was his first choice).
We are sending a lot of summer sunbeams to all of You. Please stay with us in your thoughts.
Re: Paula from Poland - Dx 2009
So we spent all the day in the Clinic where Dr Vogle works in Frankfurt.
It looks that lymphnodes are still our biggest problem.
Today dr Vogle said he tried to 'shoot' tumors which are making biggest compression and are causing Paula's problems with breathing.
I didn't like his approach to the patient at all. His office looks proffesional, he has dyplomas all over his office, bigscreen monitor and so on. But he didn't make us feel safe at all. He was checking some papers at the time he was talking to us. Said he didn't know what Paula should do. He gave impression he is very buisy with something else. Paula asked him to precise numbers of mets in the lungs, he found it difficult and then he said something about hundreds of them. I think she luckily missed that. It is still ringing in my ears though.
Anyway he isn't going to microvawe lymphnodes (he said it today for the first time that lymphnodes he can not get) He thinks Paula should come here next month for next chemoembolisation, and then maby again and again. If something gets too big, or is compressing too much, he is going to chemoembolise it. It should not be the only way to treat the disease, but what else should be the treatment he didn't know. Ask in boston - he adivsed.
I asked how Paula benefits from his procedures? He answered the tumor is growing more slowly, but didn't take time to proove it.
He advised to take Fortecortin (dexamethason) in case of some heavy breathing problems.
According what I read (thanks to Olga and link she gave me some time ago) hempotysis, and respiratory problems Paula had during last 2 weeks might be side effects of the chemoembolization. I hope they will go away. Didn't get an answer about that from dr Vogle.
Sorry I complain so much about him, but really after knowing some great doctors from Boston I'm very disappointed the way he treats Paula, I whish for the 4 thousand Euros we pay each time we come He would care more.
So to make my bitter cry come to an end - We really are lost. Don't know what to do for the next step. Who to ask. Where to search. What I know we have to be quick. Please share Your opinions with us. Healing whishes to You great spirited people!
It looks that lymphnodes are still our biggest problem.
Today dr Vogle said he tried to 'shoot' tumors which are making biggest compression and are causing Paula's problems with breathing.
I didn't like his approach to the patient at all. His office looks proffesional, he has dyplomas all over his office, bigscreen monitor and so on. But he didn't make us feel safe at all. He was checking some papers at the time he was talking to us. Said he didn't know what Paula should do. He gave impression he is very buisy with something else. Paula asked him to precise numbers of mets in the lungs, he found it difficult and then he said something about hundreds of them. I think she luckily missed that. It is still ringing in my ears though.
Anyway he isn't going to microvawe lymphnodes (he said it today for the first time that lymphnodes he can not get) He thinks Paula should come here next month for next chemoembolisation, and then maby again and again. If something gets too big, or is compressing too much, he is going to chemoembolise it. It should not be the only way to treat the disease, but what else should be the treatment he didn't know. Ask in boston - he adivsed.
I asked how Paula benefits from his procedures? He answered the tumor is growing more slowly, but didn't take time to proove it.
He advised to take Fortecortin (dexamethason) in case of some heavy breathing problems.
According what I read (thanks to Olga and link she gave me some time ago) hempotysis, and respiratory problems Paula had during last 2 weeks might be side effects of the chemoembolization. I hope they will go away. Didn't get an answer about that from dr Vogle.
Sorry I complain so much about him, but really after knowing some great doctors from Boston I'm very disappointed the way he treats Paula, I whish for the 4 thousand Euros we pay each time we come He would care more.
So to make my bitter cry come to an end - We really are lost. Don't know what to do for the next step. Who to ask. Where to search. What I know we have to be quick. Please share Your opinions with us. Healing whishes to You great spirited people!