God bless you .
An update! Please I would like to hear your responses...
So as I last stated I started with an ifosfamide rechallange the first of September. After 2 cycles there was a check up wit CT. It only showed stabilization and no shrinkage of the tumors.. to make things worse they unexpectetly found by pure coincedence a tumor of 5! cm in my abdomen. I started votrient later that week. After 2 weeks a check up just blood values and general acceptance of the medication.. . All went well so we decided to leave to Namibia. Around 20 november I started bleeding in my lungs (dfar away from any medical help so very scary). But to make things short I was able to finish the vacation as the bleeding was not too severe allthough very scary. Obviously I stopped votrient. I landed back in Belgium the 2nd of december. that was a Wednesday, got a scna that Friday and a consult on Monday. Bad news came a all tumors had grown under the votrient... . Apart from that the consult was very bad , not humane at all. So he first told me that the tumors grew and then he repeated the list of all products that I had. Start writing that on a paper from a pc screen. Then he said there was nothign left (which we all knew)(even not the epizyme study as they were still setting it up and they obviously have been very lazy since there was no progress made sinc eoctober). and then ended the consult. So I started myself about the problems I have I had really bad couching attacks so he sended me to radiology to see if they could radiate to keep the symptons under controle. It took untill Friday untill I had an appointment... Being sure radiation was possible I came back home empty handed... no radition was possible but she did made an appointment with an other docter that Monday for a bronchoscopy(14/12). He was going to check if he could remove a part of the tumor from the inside as it was blocking my airway of the left lung. That Thursday I had the small surgery which was succesfull. Now a part of my left lung in functional again...
However, the last days pain in both my lungs and abdomen is increasing... very terrifying. I was just so suprised there was not even a study i could participate in... . If i wanted to take something i could still take cycloifosfamide in low doses.... Did some of you get that? HE said zero chance of working (and it is the motherdrug of ifosfamide so i kinda went along with the story)...
It looks like you tried everything that is approved already :-( Is eribulin already approved in Europe? It's in the process to get approved in the US but response for synovial sarcoma is kind of low:
Is your state too weak to try ifosfamide again?
Kaiowas said:
An update! Please I would like to hear your responses...
So as I last stated I started with an ifosfamide rechallange the first of September. After 2 cycles there was a check up wit CT. It only showed stabilization and no shrinkage of the tumors.. to make things worse they unexpectetly found by pure coincedence a tumor of 5! cm in my abdomen. I started votrient later that week. After 2 weeks a check up just blood values and general acceptance of the medication.. . All went well so we decided to leave to Namibia. Around 20 november I started bleeding in my lungs (dfar away from any medical help so very scary). But to make things short I was able to finish the vacation as the bleeding was not too severe allthough very scary. Obviously I stopped votrient. I landed back in Belgium the 2nd of december. that was a Wednesday, got a scna that Friday and a consult on Monday. Bad news came a all tumors had grown under the votrient... . Apart from that the consult was very bad , not humane at all. So he first told me that the tumors grew and then he repeated the list of all products that I had. Start writing that on a paper from a pc screen. Then he said there was nothign left (which we all knew)(even not the epizyme study as they were still setting it up and they obviously have been very lazy since there was no progress made sinc eoctober). and then ended the consult. So I started myself about the problems I have I had really bad couching attacks so he sended me to radiology to see if they could radiate to keep the symptons under controle. It took untill Friday untill I had an appointment... Being sure radiation was possible I came back home empty handed... no radition was possible but she did made an appointment with an other docter that Monday for a bronchoscopy(14/12). He was going to check if he could remove a part of the tumor from the inside as it was blocking my airway of the left lung. That Thursday I had the small surgery which was succesfull. Now a part of my left lung in functional again...
However, the last days pain in both my lungs and abdomen is increasing... very terrifying. I was just so suprised there was not even a study i could participate in... . If i wanted to take something i could still take cycloifosfamide in low doses.... Did some of you get that? HE said zero chance of working (and it is the motherdrug of ifosfamide so i kinda went along with the story)...
The ifosfamide made the situation stable in my lungs, however in my abdomen (allthough no real scan was preformed) it showed signs of growth... so that's why they stopped. I'm still in good condition....
haven't heard of eribulin... any idea of side effects?
According to the results of the eribulin phase 2 study, "The most common grade 3-4 adverse events were neutropenia (66 [52%] of 127 patients evaluable for safety), leucopenia (44 [35%]), anaemia (nine [7%]), fatigue (nine [7%]), febrile neutropenia (eight [6%]), abnormal alanine aminotransferase concentrations (six [5%]), mucositis (four [3%]), and sensory neuropathy (four [3%])."
eribulin was refused... I still hope they start the tazemetostat trial in time... they are so slow :s
I've seen a lot of articles about initiation of the tazemetostat phase 2 study these last few days. I hope it means they are about ready to start. Happy new year! I wish you get on the study and it works for you. Good luck!!!
Small update:
after flu and a lung infection the last two weeks I'm doing relatively OK. The 25µg morfine patches take most of the pain away so.. Apart from bad sleeping, low energy and hyperventilation I’m ok J
So next week on Monday (15/2/2015) I’ll have a meating with my oncologist. First I was just waiting for the Tazometostat trail (epizyme). But Monday I called and I heard that there are 2 studies available. So this makes me wonder what that 2nd study is and if I should do it.. . Please correct me if I’m wrong or just give your opinion about it but these are my thoughts… the epizyme product Tazometostat is a pill I take at home and doesn’t seem to have strong side effects.
The 2nd thing can be chemo with heavy side effects so I refuse this. But if the 2nd choice is an immune therapy… that is also something interesting.. It doesn’t have a lot of side effect (but that’s my impression maybe I’m wrong) , can be very promising but seems to have a low success rate so far… .
I can’t count on my oncologist to tell me honestly the side effects so that’s why I want your opinion although there is still a lot of speculation…
You can find the preliminary results of tazometostat phase 1 study for lymphoma patients here:
http://www.epizyme.com/wp-content/uploads/2015/12/Tazemetostat-ASH2015.pdf
The safety profile doesn't look too bad. Most commonly reported side effect seems to be asthenia (loss of strength and energy).
The other study may be doxorubicin + olaratumab and indeed you can expect harsh side effects from that one :-(
Kaiowas said:
Small update:
after flu and a lung infection the last two weeks I'm doing relatively OK. The 25µg morfine patches take most of the pain away so.. Apart from bad sleeping, low energy and hyperventilation I’m ok J
So next week on Monday (15/2/2015) I’ll have a meating with my oncologist. First I was just waiting for the Tazometostat trail (epizyme). But Monday I called and I heard that there are 2 studies available. So this makes me wonder what that 2nd study is and if I should do it.. . Please correct me if I’m wrong or just give your opinion about it but these are my thoughts… the epizyme product Tazometostat is a pill I take at home and doesn’t seem to have strong side effects.
The 2nd thing can be chemo with heavy side effects so I refuse this. But if the 2nd choice is an immune therapy… that is also something interesting.. It doesn’t have a lot of side effect (but that’s my impression maybe I’m wrong) , can be very promising but seems to have a low success rate so far… .
I can’t count on my oncologist to tell me honestly the side effects so that’s why I want your opinion although there is still a lot of speculation…
I allready had a doxorubicin teatment so I doubt that he will propose that. Anyway if that is the choice then it's easy to choose :). Indeed the safety profile of the tazometostat doens't look to bad. There are 4 sarcomas in that study. But I can't see if had an effect on the 4 sarcoma's. (And it's not specified wich sarcoma's it are)
The study does have 4 synovial sarcoma but they only show the results for lymphoma patients (may be because they were enrolled earlier?).
Kaiowas said:
I allready had a doxorubicin teatment so I doubt that he will propose that. Anyway if that is the choice then it's easy to choose :). Indeed the safety profile of the tazometostat doens't look to bad. There are 4 sarcomas in that study. But I can't see if had an effect on the 4 sarcoma's. (And it's not specified wich sarcoma's it are)
yeah i hope the sarcoma patients had the same percentages... would they otherwise start to test in sarcoma patients?
Saw my 'doctor/oncologist' on Monday...
So I signed the papers for the Epizyme study (Tazometostat). Was going to recieve a call... Tuesday no call. Wednesday finally a call... inclusion test will be 29th of february. I have to wait another 2 weeks before they even start because it suits them better. They refused to start earlier. Atm I am very very frustrated with this ...
PS: the second study (which he refused to explain as I had to take part in the epizyme study) was a phase one immunology study from Novartis. Any idea which study this can be?
Hopefully it works and the frustration is worth it...Novartis trial is probably this one:
https://clinicaltrials.gov/ct2/show/NCT02460224
It combines 2 monoclonal antibodies: an anti-pd1 with an anti-LAG3. No idea if it would be worth trying at this point...
Kaiowas said:
Saw my 'doctor/oncologist' on Monday...
So I signed the papers for the Epizyme study (Tazometostat). Was going to recieve a call... Tuesday no call. Wednesday finally a call... inclusion test will be 29th of february. I have to wait another 2 weeks before they even start because it suits them better. They refused to start earlier. Atm I am very very frustrated with this ...
PS: the second study (which he refused to explain as I had to take part in the epizyme study) was a phase one immunology study from Novartis. Any idea which study this can be?
Earlier this week I got a phone call. The hospital, they had a phase 1 I don’t know if it works or if will get a high enough dose to make it work… . It’s an MPS1 kinase inhibitor. No idea if it could work so this has put me into a situation.
I was positive about it and I told my wife. But she collapsed (mentally) later that evening… accusing me of a lot of things maybe the stress of this study was the trigger. But she was allready longer on edge, unable to relax this whole situation is ofc pretty insane to go through. I have however no idea what I could do to help her. Every day I a bit a struggle to find energy, pump myself up to make the most of the day…
Should I refuse the study? To keep things easier? I know my brains tell me not to do the study… tumors are so big that I am incurable. And will I gain as much time as I will lose now in the hospital. Its4 days a week except week4. But my heart can’t let go of life … and this offers some hope. She thinks I should refuse but she accepts it if I would do it. The last thing I want it to complicate her life even more or make her unhappy…
This is a tough situation. Your wife’s reaction sounds like caregiver burnout and she probably didn’t think about all the implications… If you do not do the trial and then pass away, will she have another breakdown and feel responsible for not supporting you all the way? She probably needs more support, either from other family members, people in the same situation or a therapist. It’s never easy to be a caregiver 
It’s indeed a burnout. And I do not blame her for that. I just think we don’t have the right solution right now. She’s back to work fulltime…
Anybody else around who can help out so she doesn’t have to carry all the burden on her shoulders? Are there services built in the healthcare system in Belgium to help with everyday needs when a patient is unable to handle them? Something you may want to ask your healthcare provider…