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Oral chemo VOTRIENT


#61

Have you looked into cyberknife for the liver mets? I don’t know if it can be done while you have other mets but I read it can provide good control of the liver mets…


#62

A promising update for all Votrient users:

I had a PET scan last month that came back with wonderful news! The tumours and infected lymph nodes in my pelvis are completely gone/healed!! And the tumour in my lung has shrunk dramatically. I am on the chemo for at LEAST another 3 months. Radiation has become an option as has surgery. I admit I have not read this thread for a while or before I typed this message... please sound off if you are having good luck too!


#63

I am so HAPPY for you!!! What wonderful news!!! My son is doing very well on Votrient as well. His biggest concern is his skin and the burns he gets regardless of sunscreen. I am keeping you in my prayers. Yaaaayyyyyy!


#64

I too am having sun sensitivity... I am just avoiding the sun :) Kinda hard and annoying since I live in Florida. Thankfully it's too hot for me to breath well to care about being at the beach at all.

You and your son are in my thoughts! HURRAH!!


#65

Congratulations Pandoras on the great news! Do they intend to try surgery after the 3 months?


#66

That’s awesome news for both of you Elodie and pandoras. I’m so thankful. We have another month to go before scans on the Nexavar but hubby says it’s so much easier to swallow these days so maybe the tumor behind his trachea has gotten smaller (fingers crossed, prayers said). Still keeping y’all in my prayers and in my heart.


#67

Hi My dad started Votrient yday but had lots of rashes. He has also had skin irritations and a lot of shivering late at night. Is this common and could he continue Votrient along with some other medication to control these side effects?

Regards
Madhu


#68

After such great success with the votrient, it has stopped working. Dana Farber working on a new plan. We are keeping our spirits high. I hope everyone has a wonderful holiday weekend.


#69

Ellen, I hate to hear that, but in view of recent events in our lives I can’t say I’m surprised. My hubby’s back in the hospital, took him in Saturday evening with massive difficulty breathing. Scans show he has some new tumors, some existing tumors have grown and some are stable. The ones that grew are putting a lot of pressure on his pulmonary arteries as well as severly limiting the amount of air intake. I will continue to lift your family up in prayer. Keep us posted please?


#70

Ellen

My oncologist suggested this drug as an option for me. I have had synovial sarcoma now 3 times. The first time i went into remission for almost 13 years. I thought i was done with this the first time. The second time it went to my lymph nodes. Now i have a tumor on my arm. My oncologist advised that this drug is normally given to patients with sarcoma in the kidneys (or something to that effect). Let me know how your son has responded to this med and if he has/had any side effects.

Thank you!


#71

Hi Liz. My son had great results with the Votrient. It worked like a miracle for about 8 months and then slowed down. They took him off of it in September until November to give his body a rest and to see if it will regain it’s ability to shrink the nodules in his lungs. The side effects-slow healing ability, nausea and vomiting and white hair. I recommend giving it a try…it could be your miracle.


#72

Thanks Ellen. I think I am going to try this drug. God willing it will help! Also hoping my insurance doesn't give me a hard time as I have read through out this discussion that many people have had issues. Hope your son is doing well. God bless.

Liz

Ellen said:

Hi Liz. My son had great results with the Votrient. It worked like a miracle for about 8 months and then slowed down. They took him off of it in September until November to give his body a rest and to see if it will regain it's ability to shrink the nodules in his lungs. The side effects-slow healing ability, nausea and vomiting and white hair. I recommend giving it a try...it could be your miracle.

#73

The sarcoma has overtaken his lungs. My God, why?


#74

I am so so sorry Ellen....Hang in there



Ellen said:

The sarcoma has overtaken his lungs. My God, why?


#75

Ellen I'm so sorry. I know exactly what you're going through. I have no words of wisdom to offer, just a sympathetic ear. I'll keep you and yours in my prayers.

Ellen said:

The sarcoma has overtaken his lungs. My God, why?


#76

Damn disease! Keep strong Ellen! Your son needs your comfort... Is the oncologist offering any back-up plan?


#77

Hi Helen.
The votrient not worked on my son [Pantelis], and unfortunately the we lost on 27 November. He went and left us with agonizing pain and compressive.Den can describe feelings there are no words ....
I hope your son is well.


#78

Thank you everyone for your thoughts and prayers. We are a strong family and we will push ahead. James is an incredible person and is very strong in spirit.


#79

My heart is heavy for you. I am so sorry.

sofia said:

Hi Helen.
The votrient not worked on my son [Pantelis], and unfortunately the we lost on 27 November. He went and left us with agonizing pain and compressive.Den can describe feelings there are no words ....
I hope your son is well.


#80

Yestarday my Doctor told me that Panopazib has ben approved for Soft Tise Sarcoma very recently. Earlier it was
being given for kidney cancer. As per him it has shown good result for Sarcoma during trials and has little side effects. I have recieved six chemo and it is next option for me. Best wishes for your son.