So Paula is at NIH
first day on Cediranib
Here is report after CT scans of the beginning of the trial:
Multiple bilateral lung nodules, the largest a lobulated 2.8x1.5cm right upper lobe mass. Mild mosaic attenuation pattern in the right upper lobe, possibly relating to vascular compression by right hilar mass. No pleural effusions. Mediastinal and bilateral hilar adenopathy, some necrotic, and measuring up to about 3cm. No axillary adenopathy. Multiple esophageal or periesophageal nodules.
Mild prominence of the proximal right ureter to the level of abnormal right common iliac soft tissue (fibrosis?) No left hydronephrosis. Enhancing 1.2cm right common iliac adenopathy - containing left adnexal mass compatible with a dermoid. Status post recection of right iliac wing. Small fluid collection at the postpoerative site. Otherwise, no abdominal or pelvic adenopathy. Tyny amoun of pelvic ascites that may be physiologic.
3cm calcification or exostosis anterior to proximal right femur at the level of the lesser trochanter. The adjacent femorl cortex appears intact but this does no exclude that the lesion could be arising from the femur. Bones otherwise unremarkable."
Will keep You posted with more results.
Paula is pleased that she will be able to move back to Poland after 2months of the trial.
She holds on to the good sides of all of this.
I'm having this nervuos clutch in my heart cause of the knowledge that disease is spreading in Paulas' body.
I truly hate it.
Sad news.
Love to all of You
Paula on Cediranib Phase 2 clinical Trial at NIH
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula
Dear Mania,
Thank you for the thoughtful update. I am so sorry that the NIH CT scan report seems to indicate that Paula's disease has progressed, but I am very happy that she has now begun the Cediranib Trial and am very Hopeful that the Cediranib will stabilize her disease progression preventing the growth of any new mets, and that it will shrink and kill the exisiting tumors. I Hope too that she will be able to tolerate the medication well with minimal negative side effects. Please give her and yourself special hugs from me, know that I am holding both of you very close in my heart and most caring thoughts, take care, stay strong, let Hope lead you and Paula through each day, and keep the Board updated as you are able.
With deepest caring, healing wishes for dear Paula, and continued Hope,
Bonni
Thank you for the thoughtful update. I am so sorry that the NIH CT scan report seems to indicate that Paula's disease has progressed, but I am very happy that she has now begun the Cediranib Trial and am very Hopeful that the Cediranib will stabilize her disease progression preventing the growth of any new mets, and that it will shrink and kill the exisiting tumors. I Hope too that she will be able to tolerate the medication well with minimal negative side effects. Please give her and yourself special hugs from me, know that I am holding both of you very close in my heart and most caring thoughts, take care, stay strong, let Hope lead you and Paula through each day, and keep the Board updated as you are able.
With deepest caring, healing wishes for dear Paula, and continued Hope,
Bonni
Re: Paula
So it's been almost 2 weeks since Paulina stared Cediranib. She was happier before, that's for sure.
Tests CT, PET and MRI done at the beginning of treatment showed very discouraging facts:
The worst of them is that there are many tumors around Paula's windpipe and they are surrounding it and pushing other structures.
There are still few nodules in the lungs (which compared to the windpipe tumors are nothing)
There is something happening in the lymphnode in postoperative area (pelvis) which is also according to oncologist not such a big matter of concern at the moment.
We hope very much that abnormal surrounding in the chest it's going to get smaller with Cediranib (I'm praying it will disappear) since it's too tough to cut out.
If it doesn't shrink or if the Cediranib won't work - I simply don't know what is next option.
Maybe some of You reading this forum could suggest something else than cuttingout or treatment.
Maybe freezing it is an option (was that kryoablation?)
I'm so poor in knowledge.
Oncologist said there are other medications like C MET inhibitor or other kinase inhibitor.( I'm sorry maybe I'm mixing something up) We have to get into this. Since I really don't know exactly what they are, plus it's all in foreign language.....
Anyway I need some optimism shot
I just can't stand the thought that taking next poisoning medications and watching tumor spreading is all we can do....
oh boy...
In terms of how she feels on Cediranib.
She got 70 % weaker than she normaly was at the beginning. Very sleepy
- very big pain in the areas: chest (the biggest pain), head
- weird caough - very dry (disseapired after 10 days)
- no apetite
Next scans are at the beginnig of march, and we'll see then.
Paula is very very brave. She's in the states alone (I wish I could be there all the time, but having kids of my own, and work kind of makes it impossible) There are new american friends though who are just wonderfull...but she's not at home, you know....
Today she flew from Boston to Bethesda to have her blood tests done and other exams in Bethesda.
I will write more soon.
Love to all of You
Tests CT, PET and MRI done at the beginning of treatment showed very discouraging facts:
The worst of them is that there are many tumors around Paula's windpipe and they are surrounding it and pushing other structures.
There are still few nodules in the lungs (which compared to the windpipe tumors are nothing)
There is something happening in the lymphnode in postoperative area (pelvis) which is also according to oncologist not such a big matter of concern at the moment.
We hope very much that abnormal surrounding in the chest it's going to get smaller with Cediranib (I'm praying it will disappear) since it's too tough to cut out.
If it doesn't shrink or if the Cediranib won't work - I simply don't know what is next option.
Maybe some of You reading this forum could suggest something else than cuttingout or treatment.
Maybe freezing it is an option (was that kryoablation?)
I'm so poor in knowledge.
Oncologist said there are other medications like C MET inhibitor or other kinase inhibitor.( I'm sorry maybe I'm mixing something up) We have to get into this. Since I really don't know exactly what they are, plus it's all in foreign language.....
Anyway I need some optimism shot
I just can't stand the thought that taking next poisoning medications and watching tumor spreading is all we can do....oh boy...
In terms of how she feels on Cediranib.
She got 70 % weaker than she normaly was at the beginning. Very sleepy
- very big pain in the areas: chest (the biggest pain), head
- weird caough - very dry (disseapired after 10 days)
- no apetite
Next scans are at the beginnig of march, and we'll see then.
Paula is very very brave. She's in the states alone (I wish I could be there all the time, but having kids of my own, and work kind of makes it impossible) There are new american friends though who are just wonderfull...but she's not at home, you know....
Today she flew from Boston to Bethesda to have her blood tests done and other exams in Bethesda.
I will write more soon.
Love to all of You
Re: Paula
Thanks for an update. It is very sad to hear that Mania's disease has spread but I hope the trial drug will shrink these mets that make Paula's breathing difficult. I also hope that the symptoms she had are connected with the cediranib working...There are other options that I would try if it is failed (probably gemcitabine alone continuously as we had very positive example of it working in a very advanced ASPS setting and the drug is approved and avail. everywhere) and would establish to contact with Dr.Vogl from Frankfurt for sure to have someone able to ablate these mets if needed close by, not in US (where it is also few times more expensive). But for now it is better to wait for the next scan and hope for the best.
Olga
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula
Dear Mania,
It was so kind of you to write to update on Paula's current situation and her Cediranib side effects thus far. I am so deeply sorry that the initial diagnostic Trial scans show new metastasis of unresectable tumors to Paula's wind pipe ( esophagus?) and the surrounding area, but I am very Hopeful that the Cediranib will be very effective and successful in shrinking and killing the tumors as it thankfully did for Brittany's unresectable pancreatic, spleen, small bowel intusuception, and duodenum tumors which are incredibly no longer visible. Unfortunately,the side effects that Paula has experienced are very common and usually ongoing with the medication, but Hopefully they will be tolerable and not too debilitating for her. The severe fatigue may be the result of hypothyroidism which is a common side effect of Cediranib, and which can be easily treated with thyroid medication to normalize her thyroid levels. The lack of appetite and nausea are also common side effects which can be helped by the use of medical marijuana or marinol to help alleviate the nausea, stimulate the appetite to prevent severe weight loss, and reduce stress and anxiety. Perhaps this is something which she can discuss with her oncologist. I am so sorry that Paula is alone and so far from Home which must be very difficult for her and for you, but I am grateful that she has been able to meet some good friends, and that she has your continued dedicated and very loving support which I know must be very comforting and strengthening to her. I agree with Olga that there are still other treatment options if the Cediranib is heartbreakingly for some reason unsuccessful in stabilizing Paula's disease progression, but for now there is much reason for great Hope that the Cediranib will be effective. My continued most special thoughts and very best wishes will be with her, and I will be holding very tight to Hope that her March scans will show significant tumor shrinkage and stabilization of her disease with no new tumors. In the meantime, pelase take good care of yourself dear Mania and know how deeply grateful I am for your faithful updates.
With warm hugs, deepest caring, healing wishes for Paula, and continued Hope,
Bonni
It was so kind of you to write to update on Paula's current situation and her Cediranib side effects thus far. I am so deeply sorry that the initial diagnostic Trial scans show new metastasis of unresectable tumors to Paula's wind pipe ( esophagus?) and the surrounding area, but I am very Hopeful that the Cediranib will be very effective and successful in shrinking and killing the tumors as it thankfully did for Brittany's unresectable pancreatic, spleen, small bowel intusuception, and duodenum tumors which are incredibly no longer visible. Unfortunately,the side effects that Paula has experienced are very common and usually ongoing with the medication, but Hopefully they will be tolerable and not too debilitating for her. The severe fatigue may be the result of hypothyroidism which is a common side effect of Cediranib, and which can be easily treated with thyroid medication to normalize her thyroid levels. The lack of appetite and nausea are also common side effects which can be helped by the use of medical marijuana or marinol to help alleviate the nausea, stimulate the appetite to prevent severe weight loss, and reduce stress and anxiety. Perhaps this is something which she can discuss with her oncologist. I am so sorry that Paula is alone and so far from Home which must be very difficult for her and for you, but I am grateful that she has been able to meet some good friends, and that she has your continued dedicated and very loving support which I know must be very comforting and strengthening to her. I agree with Olga that there are still other treatment options if the Cediranib is heartbreakingly for some reason unsuccessful in stabilizing Paula's disease progression, but for now there is much reason for great Hope that the Cediranib will be effective. My continued most special thoughts and very best wishes will be with her, and I will be holding very tight to Hope that her March scans will show significant tumor shrinkage and stabilization of her disease with no new tumors. In the meantime, pelase take good care of yourself dear Mania and know how deeply grateful I am for your faithful updates.
With warm hugs, deepest caring, healing wishes for Paula, and continued Hope,
Bonni
Re: Paula on Cediranib Phase 2 clinical Trial at NIH
hello
i'm sorry for being late with an update
here is Paula's update from first checkup after 2 motnhs of cediranib
"Comparison with the study of Janary 3 :
Decrease In size of lung nodules
Decreased In size of portions of hilar and mediastinal adenopathy
Decrease In size and enhancement of paraesophageal nodulesIncrease In size but decreased enhancement of right common iliac node
From about 1.3 to about 1.8cm
Evidence of resection of right iliac wing with decrease In size of small fluid collection AT operative site
Impression: decrease In size of thoracic nodules/adenopathy Since Janary 3, 2011 no evidence of enlarging mass/adenopathy exept for iliac node (wiht decrease enhacement suggesting the possibility of developing necrosis)"
Overall it's good resulsts, and Cediranib is working. We are all relieved. Paula is tolerating it very very well. She is back in POland and going to fly to Bethesda every month, keepinig buisy with her studies.
Bonnie, thank You for Your good thoughts, I feel You are always there.
All the best to all
m
i'm sorry for being late with an update
here is Paula's update from first checkup after 2 motnhs of cediranib
"Comparison with the study of Janary 3 :
Decrease In size of lung nodules
Decreased In size of portions of hilar and mediastinal adenopathy
Decrease In size and enhancement of paraesophageal nodulesIncrease In size but decreased enhancement of right common iliac node
From about 1.3 to about 1.8cm
Evidence of resection of right iliac wing with decrease In size of small fluid collection AT operative site
Impression: decrease In size of thoracic nodules/adenopathy Since Janary 3, 2011 no evidence of enlarging mass/adenopathy exept for iliac node (wiht decrease enhacement suggesting the possibility of developing necrosis)"
Overall it's good resulsts, and Cediranib is working. We are all relieved. Paula is tolerating it very very well. She is back in POland and going to fly to Bethesda every month, keepinig buisy with her studies.
Bonnie, thank You for Your good thoughts, I feel You are always there.
All the best to all
m
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula on Cediranib Phase 2 clinical Trial at NIH
Dear Mania,
Thank you for your thoughtful update with the wonderful and very encouraging news about Paula's good scan results! I am so happy and grateful that she is having a positive response to the Cediranib, that she is tolerating it well, and that she is able to be home in Poland close to family and friends and pursuing her studies between her monthly Clinical Trial visits to Bethesda. My continued most caring thoughts and very best wishes are with her and your family, and I will be holding very tight to Hope for more good news of continued stable disease and tumor shrinkage from her four month status scans in May. Please give Paula and yourself special hugs from me, enjoy a most beautiful and happy Springtime, and keep in touch with the Board as you are able.
Sharing Paula's good scan results with special joy, deepest caring, and continued Hope,
Bonni
Thank you for your thoughtful update with the wonderful and very encouraging news about Paula's good scan results!
I am so happy and grateful that she is having a positive response to the Cediranib, that she is tolerating it well, and that she is able to be home in Poland close to family and friends and pursuing her studies between her monthly Clinical Trial visits to Bethesda. My continued most caring thoughts and very best wishes are with her and your family, and I will be holding very tight to Hope for more good news of continued stable disease and tumor shrinkage from her four month status scans in May. Please give Paula and yourself special hugs from me, enjoy a most beautiful and happy Springtime, and keep in touch with the Board as you are able.Sharing Paula's good scan results with special joy, deepest caring, and continued Hope,
Bonni
Re: Paula on Cediranib Phase 2 clinical Trial at NIH
Mania,
Thank you for sharing Paula's good news. I hope that the side affects are subsiding a bit. The side affects seem to change over time. Jordanne has been feeling better than ever the past month with only occasional diarhea and insomnia. She has been in the trial since January 2010 with a couple of 5-6 weeks breaks for surgeries.
Praying for continued success,
Dotty
(mom of Jordanne)
Thank you for sharing Paula's good news. I hope that the side affects are subsiding a bit. The side affects seem to change over time. Jordanne has been feeling better than ever the past month with only occasional diarhea and insomnia. She has been in the trial since January 2010 with a couple of 5-6 weeks breaks for surgeries.
Praying for continued success,
Dotty
(mom of Jordanne)
Re: Paula on Cediranib Phase 2 clinical Trial at NIH
As always we are very greatefull for your warm words.
Dotty, hello, nice to hear from You.
I sighed when You mentioned Insomnia, Paula has it sometimes as well. Sometimes she gets very sleepy during the day.
I tell You she is so so so great and brave! She is getting ready for her checkup trip to Bethesda around Easter, she also will consult the results with dr Butrynski afterwards.
Keep us in Your hearts.
All the best to You all.
m
Dotty, hello, nice to hear from You.
I sighed when You mentioned Insomnia, Paula has it sometimes as well. Sometimes she gets very sleepy during the day.
I tell You she is so so so great and brave! She is getting ready for her checkup trip to Bethesda around Easter, she also will consult the results with dr Butrynski afterwards.
Keep us in Your hearts.
All the best to You all.
m
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula on Cediranib Phase 2 clinical Trial at NIH
Dear Mania,
It was so good to hear from you. Brittany also suffers from insomnia during the night, and then she is very tired in the morning, but thankfully it does not seem to keep her from staying busy and being very active. My very best wishes and most positive thoughts will be with Paula for very good results from her upcoming scans towards the end of this month, and I will be anxiously awaiting your update. Please give Paula and yourself special hugs from me, and wish her safe travels to Bethesda from Poland.
With special caring thoughts, healing wishes for Paula, and continued Hope,
Bonni
It was so good to hear from you. Brittany also suffers from insomnia during the night, and then she is very tired in the morning, but thankfully it does not seem to keep her from staying busy and being very active. My very best wishes and most positive thoughts will be with Paula for very good results from her upcoming scans towards the end of this month, and I will be anxiously awaiting your update. Please give Paula and yourself special hugs from me, and wish her safe travels to Bethesda from Poland.
With special caring thoughts, healing wishes for Paula, and continued Hope,
Bonni
Re: Paula on Cediranib Phase 2 clinical Trial at NIH
well...disappointing news.
Todays' Petscan showed small progression in Paulas thoracic area and she was told by NIH doctor that she needs to go off the trial.
It is very fresh news, based only on Petscan,she is still before CT scan results.
I'm wondering if she should push things around NIH to have results consulted with dr Kummar (who is out of NIH this week). Or just accept things as they are, since NIH people know what they are doing.
I don't remember well, but maybe it happens so with Cediranib that it works not so strong everytime.
Or maybe I'm trying to deny the fact that Paula is developing resistanse to this drug.
Anyway the tumor is still smaller than in january, but since it's progressing they need to take her of the trial.
We feel disappointed. Paula has been only 4 months on Cediranib Trial, we were counting it was more succesfull.
But are greatefull it was possible anyhow.
Next step is visit in Boston with dr Butrynsky and creation of a new plan for Paula with him.
Hugging You all with postEaster greatings
Todays' Petscan showed small progression in Paulas thoracic area and she was told by NIH doctor that she needs to go off the trial.
It is very fresh news, based only on Petscan,she is still before CT scan results.
I'm wondering if she should push things around NIH to have results consulted with dr Kummar (who is out of NIH this week). Or just accept things as they are, since NIH people know what they are doing.
I don't remember well, but maybe it happens so with Cediranib that it works not so strong everytime.
Or maybe I'm trying to deny the fact that Paula is developing resistanse to this drug.
Anyway the tumor is still smaller than in january, but since it's progressing they need to take her of the trial.
We feel disappointed. Paula has been only 4 months on Cediranib Trial, we were counting it was more succesfull.
But are greatefull it was possible anyhow.
Next step is visit in Boston with dr Butrynsky and creation of a new plan for Paula with him.
Hugging You all with postEaster greatings
Re: Paula on Cediranib Phase 2 clinical Trial at NIH
Hello Mania,
I am sorry that this is happening! If it was me i would wait for the main doctor to let you know what is happening and also the CT. Others may say different that are on this trial and i would fallow there felings over mine.. But, untill i was told by somone that really knows wait in the main doctor is there
easter hugs to you both!
I am sorry that this is happening! If it was me i would wait for the main doctor to let you know what is happening and also the CT. Others may say different that are on this trial and i would fallow there felings over mine.. But, untill i was told by somone that really knows wait in the main doctor is there
easter hugs to you both!
“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
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Paula on Cediranib Phase 2 clinical Trial at NIH
Sorry to hear about that 
Mania, can you be more specific regarding the growth? What does the radiologist's report actually say about the dimensions, etc?
Mania, can you be more specific regarding the growth? What does the radiologist's report actually say about the dimensions, etc?-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula on Cediranib Phase 2 clinical Trial at NIH
Dear Mania,
I am so very sorry that Paula's four month re-staging PET scan shows some increased growth in her thoracic area mets, and that she is therefore being taken off of the Trial. I don't understand how/why this decision is being made prior to receiving and reviewing the results of the CT scans and Paula meeting with Dr. Kummar to discuss the results and other possible treatment options if the CT scans do verify the preliminary findings of the PET scan. I personally think that if Paula's schedule allows, she should insist on reviewing all of the scan results with Dr. Kummar when Dr. Kummar returns, but perhaps in the interim she could travel to Boston to consult with Dr. Butrynski so that she is not wasting valuable time waiting for Dr. Kummar's return next week. Regarding your comment that "I don't remember well, but maybe it happens so with Cediranib that it works not so strong everytime.", based on the experiences of most of the ASPS Cediranib patients thus far it seems that the intial amount of tumor shrinkage caused by Cediranib seems to plateau after a few months for most of the patients, but I am not personally aware of any cases where some tumors began having increased growth, and then returned to having more shrinkage.
I know how very discouraging this news is for Paula, you, and your family, and I so deeply share your great disappointment and heartbreak, but Hopefully Dr. Butrynski and Dr. Kummar will have some other promising new treatment options to offer if it is definitely determined that Paula has developed resistance to the Cediranib. Please take care dear Mania, keep the Board updated as you are able with the CT scan results and the outcome of the consultation with both Dr. Butrynski and Dr. Kummar, and know that I am holding Paula and you very close in my heart and my most caring thoughts.
With special hugs, deepest caring, healing wishes for Paula, and continued Hope,
Bonni
I am so very sorry that Paula's four month re-staging PET scan shows some increased growth in her thoracic area mets, and that she is therefore being taken off of the Trial. I don't understand how/why this decision is being made prior to receiving and reviewing the results of the CT scans and Paula meeting with Dr. Kummar to discuss the results and other possible treatment options if the CT scans do verify the preliminary findings of the PET scan. I personally think that if Paula's schedule allows, she should insist on reviewing all of the scan results with Dr. Kummar when Dr. Kummar returns, but perhaps in the interim she could travel to Boston to consult with Dr. Butrynski so that she is not wasting valuable time waiting for Dr. Kummar's return next week. Regarding your comment that "I don't remember well, but maybe it happens so with Cediranib that it works not so strong everytime.", based on the experiences of most of the ASPS Cediranib patients thus far it seems that the intial amount of tumor shrinkage caused by Cediranib seems to plateau after a few months for most of the patients, but I am not personally aware of any cases where some tumors began having increased growth, and then returned to having more shrinkage.
I know how very discouraging this news is for Paula, you, and your family, and I so deeply share your great disappointment and heartbreak, but Hopefully Dr. Butrynski and Dr. Kummar will have some other promising new treatment options to offer if it is definitely determined that Paula has developed resistance to the Cediranib. Please take care dear Mania, keep the Board updated as you are able with the CT scan results and the outcome of the consultation with both Dr. Butrynski and Dr. Kummar, and know that I am holding Paula and you very close in my heart and my most caring thoughts.
With special hugs, deepest caring, healing wishes for Paula, and continued Hope,
Bonni