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Oral chemo VOTRIENT


#21

That’s fantastic news, Ellen. Keep it coming!


#22

That is GREAT News I am so happy for you!


#23

Hi evryone,
I know your blog with Elodie.
I’m jérémry charbonnel i’m not very acctived on this blog but read regulary.
I have a big difficult english written.
I will started a treatment whit Panopazib rapidly i hope.
I’ll have 3 chemical therapy before and an ILP to save my right leg.
My first chemotherapy was made from Doxorfubicine and Ifosfamide before the surgeon removes the primary tumor.
Then complete remission for 11 months.
Discovery of pulmonary metastasis 3 in the left lung and 2 in the periferc lung (plévre)
So i first a first line of chemotherapy with Cisplatine and Etoposide.
No result for me the node progrssive stop after 3 cycle.
Second line of chemotherapie is withGemzar and Taxotere so the result is a non progressif for 6 month.
Now my doctor proposing to me 3 solutions :
Have a new chemiotherapy with Ifosfamide HD; chmiotherapy with Yondelis or trial a phase 1 of Pazopanib.
I meet the news service of the IGR hospital thusday so i think i had more information.
Thank to have readingme and sorry for my poor english
jerey


#24

Has the Rapamyacin had an effect yet???



Danny said:

My wife's last scans showed that the mets in her lungs remained stable, but unfortunately her primary tumor in her leg has recurred. She'll be continuing on the pazopanib for now, and we've added rapamycin- an mTOR inhibitor. It seems the pazopanib is doing something, but just not enough to get the tumors to start shrinking. Ellen and Alicia- so glad to hear that your son and husband have had encouraging results. Hope it continues!

#25

She’s having scans next week, we’ll know more then. The side effects haven’t been fun- nausea, fatigue and mouth sores being the main culprits. We’re managing and she has a great attitude about everything. But it’s been a lot harder on her than Pazopanib alone. How is your husband doing? Best of luck!


#26

We have scans in one month.....xrays showed some shrinkage, but a scan will give a clearer result.

Am looking at plan B just in case. Have you heard of the trials being done by steven A Rosenberg on Adoptive immunotherapy? Sounds very promising.

Hope your scans show something positive.

Alicia


Danny said:

She's having scans next week, we'll know more then. The side effects haven't been fun- nausea, fatigue and mouth sores being the main culprits. We're managing and she has a great attitude about everything. But it's been a lot harder on her than Pazopanib alone. How is your husband doing? Best of luck!

#27

Our oncologist tried to qualify my wife for the Rosenberg trial as soon as she was diagnosed, but unfortunately she doesn’t have the right HLA type for the trial. I’ve been in touch with his lab a few times since then, and so far they’re not able to expand the trial to include other HLA types. Very frustrating, but such is life!! Has your husband had HLA typing done? Have you been in touch with anybody at NIH?


#28

we live in Australia so i am just begining to research

out how we would go onto the trial if HLA type was the right type

Danny said:

Our oncologist tried to qualify my wife for the Rosenberg trial as soon as she was diagnosed, but unfortunately she doesn't have the right HLA type for the trial. I've been in touch with his lab a few times since then, and so far they're not able to expand the trial to include other HLA types. Very frustrating, but such is life!! Has your husband had HLA typing done? Have you been in touch with anybody at NIH?

#29

Folks, my husband was diagnosed with Synovial sarcoma in March 2000. To date he’s been on several different chemo drugs, was excluded from the vaccine trial at NIH and has participated in a phase I trial at MD Anderson in Houston, Tx. His doctors seem to think we’re running out of chemo drug options. His disease started in his left wrist/forearm area and has metasticized to his lungs and chest with lymph involvement. I’m very interested to hear news of these medications if you don’t mind sharing. I’d love to know how your loved ones are doing today and is the Pazopanib still in clinical trials?


#30

Hi Debbie… The Pazopanib is working REALLY well! I will post after his next scans…keep an eye open.


#31

Thank you Ellen, I’ll be in prayer for excellent results.


#32

We just got the results of CT scan…All Tumors have shrunk a bit and show significant necrosis. A Great Result after 3 months !!!


#33

MRI of leg and CAT of lungs…No cancer in the leg and the nodules in the lungs continue to shrink and some have even disappeared!!! So excited!


#34

That is awesome !!!! What a wonder drug! To think that the main sarcoma specialist in our country refused it to us is incredulous.....Lucky we changed Doctors and he fully supported us to try it.

So happy to hear your news xxx


#35

Keeping you and yours in our prayers. Stay strong and loving.

Alicia McFarlane said:

That is awesome !!!! What a wonder drug! To think that the main sarcoma specialist in our country refused it to us is incredulous.....Lucky we changed Doctors and he fully supported us to try it.

So happy to hear your news xxx


#36

Just started Votrient 5/9/11... Started at 800mg, but because of seriously frequent intestinal issues, we backed down to 600mg inside 3 days. Obviously have not been on long, but now reading these comments I have high hopes. I have mets in the lungs and possibly the lymph nodes in my groin. I still feel pretty good, except the last 3 days I have felt really blah.

Is anyone having complete lack of interest on this drug or is this something else?


#37

Ellen that’s wonderful news! My husband started Votrient April 28, 2011, had a major bleeding episode from his lungs on April 30th and we rushed him to the hospital. He spent a week in the hospital during which his doctor recommended we hold the Votrient. Today we saw the doctor for his check up and got the okay to resume the meds but at a lower dosage building up to 800mg so we’re asking for prayers, good thoughts and positive energy.


#38

Sending some positive energy from Australia xx Thinking of you and praying that the pazopanib does the job!!!



Debbie Nelson said:

Ellen that's wonderful news! My husband started Votrient April 28, 2011, had a major bleeding episode from his lungs on April 30th and we rushed him to the hospital. He spent a week in the hospital during which his doctor recommended we hold the Votrient. Today we saw the doctor for his check up and got the okay to resume the meds but at a lower dosage building up to 800mg so we're asking for prayers, good thoughts and positive energy.

#39

Thank you Alicia, we need all the prayers, positive energy and good thoughts we can get.

Alicia McFarlane said:

Sending some positive energy from Australia xx Thinking of you and praying that the pazopanib does the job!!!

Debbie Nelson said:
Ellen that's wonderful news! My husband started Votrient April 28, 2011, had a major bleeding episode from his lungs on April 30th and we rushed him to the hospital. He spent a week in the hospital during which his doctor recommended we hold the Votrient. Today we saw the doctor for his check up and got the okay to resume the meds but at a lower dosage building up to 800mg so we're asking for prayers, good thoughts and positive energy.

#40

Was wondering how you’re doing on the Votrient? We are having problems getting the insurance company to pay benefits. He’s taken the drug for one month now and our oncologist said he should be on it for 2 months before we know if it’s working.

pandoras_sarcoma said:

Just started Votrient 5/9/11... Started at 800mg, but because of seriously frequent intestinal issues, we backed down to 600mg inside 3 days. Obviously have not been on long, but now reading these comments I have high hopes. I have mets in the lungs and possibly the lymph nodes in my groin. I still feel pretty good, except the last 3 days I have felt really blah.

Is anyone having complete lack of interest on this drug or is this something else?