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Help, run out of treatment options


#1

Hello,

I am really lost at this moment. Our doctor says that there are no more available treatments for my mother. That is terrible news for us and losses her hope after hearing this...

Could you share your experience and maybe other possibile treatments available for synovial sarcoma?

the treatment she had:

1. Ifo-doxo scheme and radiation --> the only one treatment helped to stop the tumor

2. Pazopanib --> not effective

3. high dose of Ifosfamide --> not effective

4.Dacarbazine + Gemcitabine --> not effective

5. Yondelis --> the ministry of health does not provide this medicine in Lithuania..

do you have any ideas?


#2

In terms of approved drug treatments, this is it. Everything else is at an experimental stage.

Is there anything that can be done with radiation, RFA, cryosurgery or surgery?

Since Lithuania is part of the European Union, could your mother have access to the following trial in France?

http://clinicaltrials.gov/show/NCT01469975

Here is a list of trials in Australia:

http://clinicaltrials.gov/ct2/results?term=%22solid+tumor%22+%22Australia%22&recr=Open&pg=1


#3

How is your mother? What is her diagnosis? Is there any metastisis to other areas? I am currently thinking about alternative medicine. Is this something you would consider? If so I can tell you more about it. Otherwise I can tell you how my experience goes when I get back in September.


#4

Hello,

Eribulin seems to work in some sarcomas too ( it's used generally in breast cancers).

I'm from France and my oncologist told me it could be a possibility for me (leiomyosarcoma).

Wish you good luck.

Anna


#5

Hello,
Sorry to hear of your mother’s present situation. Per your request I can only share with you my personal events. When I had synovial sarcoma for the third time over seven years, three pastors visited me at home and prayed for me while doing the Laying on of Hands. Then after my final operation tne cancer never came back into my body. I also had a strong faith and love to be with my family. I had a real strong desire to live for my family.


#6

Hello, Sara,

Thank you for your reply! The situation is very similar and it sad to get these kind of answers.. I asked the second opinion and most of the doctors replied that the last option is trebectedin...

Did the doctor let your brother go home without any treatment? Hos is your brother? Does he get stronger?

I will check NY-ESO-1!


Sara said:

Hello,

My brother had exactly the same treatment as your mother:
1) Ifos + Doxo = effective
2) Single dose Infos = effective for a while but stopped working
3) Gemcitabine and Dacarbazine - not effective
4) Pazobanib = worked for a very short time and now stopped working
5) Yondelis = have not tried as public health does not fund it, and we are thinking whether to try, but he is now very weak.

We are now thinking may be immunotherapy trials, I have heard that NY-ESO-1 , but people say its only available on the USA and we live in Australia.

Our doctor also has not provided any other options. HAs anyone got any ideas?


#7

Thank you Bob for sharing! We pray and we try stay strong as much as we can! we believe in faith and we are still fighting! you experience encourages to stay strong

Raleigh Bob -43 year survivor said:

Hello,
Sorry to hear of your mother's present situation. Per your request I can only share with you my personal events. When I had synovial sarcoma for the third time over seven years, three pastors visited me at home and prayed for me while doing the Laying on of Hands. Then after my final operation tne cancer never came back into my body. I also had a strong faith and love to be with my family. I had a real strong desire to live for my family.

#8

Hello, Anna,

Thank you for sharing, I will talk with our doctor about this option!

I hope Eribulin will work for you!!

annastomose said:

Hello,

Eribulin seems to work in some sarcomas too ( it's used generally in breast cancers).

I'm from France and my oncologist told me it could be a possibility for me (leiomyosarcoma).

Wish you good luck.

Anna


#9

Hello,

She has tumor in her left leg and metastasis in bones.

What kind of alternative medicine is that? let us know more about it!


MissMya said:

How is your mother? What is her diagnosis? Is there any metastisis to other areas? I am currently thinking about alternative medicine. Is this something you would consider? If so I can tell you more about it. Otherwise I can tell you how my experience goes when I get back in September.

#10


Hello, Elodie,

Thank you for sharing the trial! I contacted few trial before and still waiting for the reply if she could participate.

Also, I have consulted with our doctor about the trial in France, but he was skeptical about it...

Moreover, I will ask about RFA and cryosurgery, because we still haven't discuss that.

Elodie Espesset said:

In terms of approved drug treatments, this is it. Everything else is at an experimental stage.

Is there anything that can be done with radiation, RFA, cryosurgery or surgery?

Since Lithuania is part of the European Union, could your mother have access to the following trial in France?

http://clinicaltrials.gov/show/NCT01469975

Here is a list of trials in Australia:

http://clinicaltrials.gov/ct2/results?term=%22solid+tumor%22+%22Aus...


#11

For bone metastases, you may want to look into zometa and cabozantinib:

http://www.us.zometa.com/patient/bone-metastases.jsp?usertrack.filter_applied=true&NovaId=2935376952368526477

http://www.ncbi.nlm.nih.gov/pubmed/23292795

There is also LITT ablation:

http://www.ncbi.nlm.nih.gov/pubmed/21175405


#12

Please do not give up because the doctors told my husband so many times that he was going to die and he always bounded back, except this last time. He found doxirubicin especially helpful, which put him in remission. However, it can be extremely toxic to the heart and the side effects are brutal. Hopefully this helps.


#13

My mother uses zometa and tomorrow she has a scan. I hope zometa helps a lot not to grow for metastases in bones. I will update with the results.

Elodie Espesset said:

For bone metastases, you may want to look into zometa and cabozantinib:

http://www.us.zometa.com/patient/bone-metastases.jsp?usertrack.filt...

http://www.ncbi.nlm.nih.gov/pubmed/23292795

There is also LITT ablation:

http://www.ncbi.nlm.nih.gov/pubmed/21175405


#14

Sara,

Most important you are together with your family. Your brother will feel stronger and will be able to take trabectedin, which I believe will stop the grow.

Sara said:

Thanks Elodie, yes, my brother is on Zometa.
Will check out the others you mentioned.
The pain seems quite unbearable for him and we need to find a way to control it other than to give more and more morphine.


#15

Evan,

Yes, Doxorubicin worked for my mother too.
Which treatment did your husband have before doxo?

Evan said:

Please do not give up because the doctors told my husband so many times that he was going to die and he always bounded back, except this last time. He found doxirubicin especially helpful, which put him in remission. However, it can be extremely toxic to the heart and the side effects are brutal. Hopefully this helps.