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Those with sarcomatoid features

MattInVa
MattInVa Member Posts: 50

I wanted to know if others are willing to share there stories of treatment results, specifically stage 4 grade 4 with high necrosis and sarcomatoid features.

I went to Johns hopkins today and the info I recieved depressed me a good bit. I had some missunderstanding of how the treatments worked.

They suggest HDIL2, of course coming off votrient first for a month (I have only been on it 6 weeks). I understand it has a low sucess rate and especially when it comes to RCC with more aggressive features.

He also said PD1 will be available shortly and a new clinical trial I would most likely be eligible for.

It all seems like a try and see if it works, if not try something else.

 

Thanks,

Matt

 

Comments

  • dhs1963
    dhs1963 Member Posts: 513
    we should have had coffee yesterday...

    I was up there for my semi-annual scans and meeting with Dr. Hammers.  

    There are Stage IV sarcomitoid success stories.  I am a lucky one.  About three years ago, I was sarcomitoid at Grade 4 Stage Iv, but stage IV because of a solitary met that was treated surgically.  I was given an 80% chance of recurrance within 3 years.  Today, three years later, I am cancer free.  Dr. Hammers was telling me PD1 will be approved any day.  It has been appropved for other cancers.  

    Good look.  (also in Va)

  • Richgels1
    Richgels1 Member Posts: 26
    Votrient

    Hi Matt,

    I am stage IV grade IV 20% sarcomatoid features. I have recurrance with a tumor on my right bronchial tube. I was placed on Votrient. After 3 months my tumor showed no size change and after 6 months am NED. Six weeks doesn't sound like a long enough time to see if it works for you but I'm guessing they are taking you off it because you are a good candidate for the HDIL2. My doctor says he has had good success with Votrient not only with myself but others. I'm on the 200mg dosage level and am dealing with the side affects pretty well. If it's the HDIL2 that you have heard has a low success rate I can agree with you. The best thing about it though is that it is possible you would not have to be on meds afterwards if you respond. No meds is your best chance at feeling pretty normal again. Check out this story for more info and a success story.  

     http://www.cancercompass.com/message-board/message/all,75130,0.htm

    Good luck I hope you do well.

    Scott

  • MattInVa
    MattInVa Member Posts: 50
    Richgels1 said:

    Votrient

    Hi Matt,

    I am stage IV grade IV 20% sarcomatoid features. I have recurrance with a tumor on my right bronchial tube. I was placed on Votrient. After 3 months my tumor showed no size change and after 6 months am NED. Six weeks doesn't sound like a long enough time to see if it works for you but I'm guessing they are taking you off it because you are a good candidate for the HDIL2. My doctor says he has had good success with Votrient not only with myself but others. I'm on the 200mg dosage level and am dealing with the side affects pretty well. If it's the HDIL2 that you have heard has a low success rate I can agree with you. The best thing about it though is that it is possible you would not have to be on meds afterwards if you respond. No meds is your best chance at feeling pretty normal again. Check out this story for more info and a success story.  

     http://www.cancercompass.com/message-board/message/all,75130,0.htm

    Good luck I hope you do well.

    Scott

    Thanks For sharing.

    Thanks for sharing,

    Would have been good to see you at Hopkins. I had to leave early as my appointment was 8am. LOL. 

     

    I have been handling 800mg daily and my first scan is next week. My side effects have been mild enough. Mostly mild Nausea in the AM and I have a horrible time riding in a car (Driving im fine) First real thing I noticed was my beard turned blonde then my eyebrows and my hair is growing out blonde at the roots. My liver enzymes have been fine and a little itchy on occasion. My BP has been steady around 108-115.

     

    I am very nervous about my first scan.