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Requesting info.. Hope someone can share!


#1

I was dx last week with stage 4 synovial sarcoma. It has gone to my lungs. I do not know if it is anywhere else. I think they think it is in the lymph, too. They said it is systemic. They have not made any further mention of more testing or surgery at this time. My next step per the appointment is beginning Votrient orally 4 x per day for a month with weekly bloodwork and a continuation of one more month if all goes well with toleration, etc. Then they will look at cts again. They will assess for shrinkage. I looked the med up on the FDA gov website. It said that the drug was approved for patients who have advanced disease AND who have been on other chemo which I have not. Also, it seemed from the studies that halted progression was achieved for a short period of time, but it does not mention tumor shrinkage in the exerpt. I would love to get my hands on the actual study. Also, what has been your experience with Votrient, if any? I welcome your input so much as an aid to learn all that I can and make my own informed decisions about my own body. It means so much to share with you here. Thank you for any replies and prayers! Debbie.

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#2

Check out Synovial Sarcoma Support Group om Facebook, a mother ,Jackie, is asking about the same drug for her son.

Writing to you from Norway, my son have SS in his shoulder. He dit not use Votrient.

Best of luck to you.


#3

http://hcp.gsk.co.uk/products/votrient-in-sarcoma/clinical-trials-and-papers/phase-ii-study.html

Hi Debbie,

This may give you some info on what you are looking for. I haven't had votrient/Pazopanib yet it will be my 3rd line chemo. I have SS mets to lungs too. Hope you are coping alright, if you want to talk or anything just let me know.

Best wishes

Karen xxx


#4

My advice to you is very hard to take but you have two options,Stop taking all drugs they don't work! You can enjoy the time the Lord gives you or you can be sick and tortured to the end. The second option is go to Mexico for treatment at Gerson clinic or other clinics that use laetrile and DMSO. Dr. Gilberto Alvarez Stella Maris Clinic. Tijuana Phone # 011-52-6646-343444. Hopefully you are a believer and know that this world is not all there is. God bless you and be with you.

Synovial Mom


#5

Debra,

I'm not familiar with Votrient being the first line of chemo. I was told when placed on the drug that it is usually recommended when you have mets that are stable and it is used to prevent them from spreading. I have been on Votrient for over a year now. So far, it has been successful even with all of the annoying side effects. The maximum dosage per day is 800mg...that's 4 pills bc they come in 200mg. per tablet, so I don't understand how you can take 4 x's a day. I would question that administration of the drug. Hopefully you are seeing a sarcoma specialist. That doesn't sound correct. Because of the side effects, I have had my dosage reduced twice, but it is still working. Praise God!

Before I was placed on Votrient, I was administered Ifosamide (Ifex) on a 14-day continuous cycle for 7 months. This is the drug that stabilized one of my tumors that finally became resistant to the Trabectedine (Yondelis trial) that I was on for 5 years. I have a total of 9 tumors through out my body including the lungs. My situation is very complex, but I have been able to survive through radiation, chemo and surgery and a strong belief in God. I have been doing this for 22 years. Don't give up! You fight by any means necessary to stay alive. There was a list being put together on this site for Drs. and hospitals who specialize in sarcomas. If you are in the US, there are several reknown physicians who have expertise and experience with SS. Hopefully you're able to search the site and find this list. .Ask as many questions necessary until you are satisfied.

Best of luck to you


#6

Debbie,

My daughter was on Votrient for a few months and generally tolerated it well. After a few months she began to have real problems with her good lung collapsing. This is one of the more common side effects of Votrient.

I'm so sorry that you are having to go thru this. My daughter was labeled stage III when she was first diagnosed, but they did mention they saw spots in her lungs on the ct that they weren't sure of. Looking back, it was likely the tumor and she was likely really stage IV but we'll never know for sure.

Typically the first line of chemo is doxorubicin and ifosfamide. These are the strongest drugs out there as far as killing the cancer cells / shrinking the tumors. I'm not meaning to 2nd guess your doctors but you might want to at least ask why they aren't giving you that protocol first. Though I must warn you these drugs can make you quite sick. So the decision will also depend on how determined you are to fight this.

You can count on my prayers for you and your family. ImaFighter91 is a great example of someone who just continues to fight this. She was a real encouragement to me while my daughter was engaged in her fight. My daughter fought for over six years but she just had lost too much lung capacity and in the end the tumors grew out against her stomach too and she just couldn't eat enough to put on any weight.

Take it a day at a time. And if it gets really bad some days, just take it moment to moment. You've found a great place for support online. Hopefully you have great support around you as well. Ask any questions you want to, we'll try our best to answer them.


#7

Thank you so much for responding to me! I will try to talk with Jackie. God Bless! I will enjoy also talking with you in the future. Debbie.

Deninka said:

Check out Synovial Sarcoma Support Group om Facebook, a mother ,Jackie, is asking about the same drug for her son.

Writing to you from Norway, my son have SS in his shoulder. He dit not use Votrient.

Best of luck to you.


#8

Hi Debra,

Would you considder cannabis as part of your treatment....?

http://www.youtube.com/watch?v=B4xejnsLwKE

I would like te share my expierience with you if you like.


#9


Thank you for your advice. Having been in the healthcare field, I do know that traditional, modern medicine is lacking. Still, I do know that some meds of any or most kinds do work based on their pharmacology some of the time for some people. actually some drugs in our culture do even have a better success rate than that. I also do understand what you are saying about the drugs related to synovial sarcoma, but perhaps they do again work sometimes at least for a while for some. Chemo has got to be awful... way more terrible than I can currently imagine. I do love the Lord... he is the head of my life and He is very able. I do know unless there is a miracle, this disease is not going away for me. Still, I am not hopeless and I am also not optionless ever as long as I believe. Faith can move more than mountains. Death's sting on the other hand, is a wretched darkness, but there is perfect light at the other side of it for all believers in Christ. I am sorry for your loss, and I honestly will pray for healing of what I'm sure are very deep and understandable wounds. Debbie.
Synovialmom said:

My advice to you is very hard to take but you have two options,Stop taking all drugs they don't work! You can enjoy the time the Lord gives you or you can be sick and tortured to the end. The second option is go to Mexico for treatment at Gerson clinic or other clinics that use laetrile and DMSO. Dr. Gilberto Alvarez Stella Maris Clinic. Tijuana Phone # 011-52-6646-343444. Hopefully you are a believer and know that this world is not all there is. God bless you and be with you.

Synovial Mom


#10

I would be interested in hearing about your experience, but I am not interested in cannabis in an inhalation form as I have also severe emphysema. Debbie.

Max said:

Hi Debra,

Would you considder cannabis as part of your treatment....?

http://www.youtube.com/watch?v=B4xejnsLwKE

I would like te share my expierience with you if you like.


#11

Thank you so much for sharing with me. It means a lot! The collapsed lung business really does scare me. I do have severe emphysema.I am on o2 most of the time. And I also have heart disease with a hx of bypass. So many things to get in the way! My support system is great, and I am so glad that I have found friends in each of you. My faith is strong. Of course, I do not want to die. It must have been such a heartfelt, neverending pain to lose your daughter. I am sorry for your loss. Thank you again and I hope to talk with you also soon for more insight. Debbie.

Kayleigh'sDad said:

Debbie,

My daughter was on Votrient for a few months and generally tolerated it well. After a few months she began to have real problems with her good lung collapsing. This is one of the more common side effects of Votrient.

I'm so sorry that you are having to go thru this. My daughter was labeled stage III when she was first diagnosed, but they did mention they saw spots in her lungs on the ct that they weren't sure of. Looking back, it was likely the tumor and she was likely really stage IV but we'll never know for sure.

Typically the first line of chemo is doxorubicin and ifosfamide. These are the strongest drugs out there as far as killing the cancer cells / shrinking the tumors. I'm not meaning to 2nd guess your doctors but you might want to at least ask why they aren't giving you that protocol first. Though I must warn you these drugs can make you quite sick. So the decision will also depend on how determined you are to fight this.

You can count on my prayers for you and your family. ImaFighter91 is a great example of someone who just continues to fight this. She was a real encouragement to me while my daughter was engaged in her fight. My daughter fought for over six years but she just had lost too much lung capacity and in the end the tumors grew out against her stomach too and she just couldn't eat enough to put on any weight.

Take it a day at a time. And if it gets really bad some days, just take it moment to moment. You've found a great place for support online. Hopefully you have great support around you as well. Ask any questions you want to, we'll try our best to answer them.


#12

You, my darling, are my hero on this cold and uncertain night here in PA in the USA! I will plan on talking with you more very soon! Debbie.

imaFighter91 said:

Debra,

I'm not familiar with Votrient being the first line of chemo. I was told when placed on the drug that it is usually recommended when you have mets that are stable and it is used to prevent them from spreading. I have been on Votrient for over a year now. So far, it has been successful even with all of the annoying side effects. The maximum dosage per day is 800mg...that's 4 pills bc they come in 200mg. per tablet, so I don't understand how you can take 4 x's a day. I would question that administration of the drug. Hopefully you are seeing a sarcoma specialist. That doesn't sound correct. Because of the side effects, I have had my dosage reduced twice, but it is still working. Praise God!

Before I was placed on Votrient, I was administered Ifosamide (Ifex) on a 14-day continuous cycle for 7 months. This is the drug that stabilized one of my tumors that finally became resistant to the Trabectedine (Yondelis trial) that I was on for 5 years. I have a total of 9 tumors through out my body including the lungs. My situation is very complex, but I have been able to survive through radiation, chemo and surgery and a strong belief in God. I have been doing this for 22 years. Don't give up! You fight by any means necessary to stay alive. There was a list being put together on this site for Drs. and hospitals who specialize in sarcomas. If you are in the US, there are several reknown physicians who have expertise and experience with SS. Hopefully you're able to search the site and find this list. .Ask as many questions necessary until you are satisfied.

Best of luck to you


#13

I'd be careful regarding cannabis. According to the following article, it decreases proliferation in some cancer lines while increasing proliferation in others:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3770515/

I can't find any study that tested its effect on synovial sarcoma. It would be nice to know if anybody has actually tried it and with what result.

Max said:

Hi Debra,

Would you considder cannabis as part of your treatment....?

http://www.youtube.com/watch?v=B4xejnsLwKE

I would like te share my expierience with you if you like.


#14

I know, there's still a lot to be learned about the side-affects...... When i was given ifo/doxo i knew about the side affects of it.I am taking cannabis as a tea for over three years now, had some side-affects in the beginning but with support from my oncologist and a expierienced cananabis user i reduced them.

I came to use cannabis because i'de lost more than a third of my bodyweight during chemo. I came to proceed the cannabis use because of its function to stop me growing any more cancercells.

I don't want the lung-mets.... so far so good. The dokters keep a close eye on me.

I don't have to take votrient, wich side affects are mutch worse.

Its a way of life ore thinking as you wish.

Thanks for sharing the artikel i found it most interesting.



Elodie Espesset said:

I'd be careful regarding cannabis. According to the following article, it decreases proliferation in some cancer lines while increasing proliferation in others:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3770515/

I can't find any study that tested its effect on synovial sarcoma. It would be nice to know if anybody has actually tried it and with what result.

Max said:

Hi Debra,

Would you considder cannabis as part of your treatment....?

http://www.youtube.com/watch?v=B4xejnsLwKE

I would like te share my expierience with you if you like.