Seeking guidance reg treatment after nephrectomy

aditya_fighter
aditya_fighter Member Posts: 20
edited July 2012 in Kidney Cancer #1
Dear All

I had been reading posts on this discussion board since last 4-5 days and believe me, I have got connected with all of you. I am getting so much inspiration and strength, after reading all positive thoughts of yours.

Can somebody please tell me, whether MDX 1106 and Votrient are same or different drugs. How do you take MDX 1106. Is it oral or infused through IV line.

I am thinking of seeking the opinion of MD Anderson Cancer Institute in Houston, Texas regarding my further treatment. Whether Votrient is good enough for me or HD IL2 or MDX 1106 would be more suitable. The brief history of my case is as under

Name Aditya
Native India
Sex Male
Age 51 years
Weight 86 Kg (lost 9 Kg during the surgery etc)
Symtoms Acute cough for last 2 years

Diaganosis RCC, clear cell carcinoma on 21.5.12. Tumor size 16cmx11cmx10cm. Some pulmonary nodules/metastasis of very small size (uptake value 1.9 cms) detected in PET scan. No evidence of active desease anywhere else in the body.

Radical nephrectomy done on left kidney on 25.5.12. Cough totally vanished. Put on Votrient 800 mg OD since 10.6.12. No scan done after surgery. Next scan due in mid Sept 12. Good prognosis, no co-morbadities, general health is good.

I am in a confused state of mind, because in India, medical oncos are not adequately experienced with HD IL2 or MDX 1106 etc. I also understand that if I remain on Votrient for long, say 3 months or so, then I would not be able to take HD IL2, even if it is advised at a later date. Some of my relatives, who are doctors, are advising me to seek opinion from MD Anderson Institute.

Dear ones, can somebody guide me in this matter, as to, what should I do. I would also like to know about costs of these treatments as my insurance does not cover international treatment, so I would like to know whether I would be able to afford it or not.

I would be grateful for your help.

Aditya

Comments

  • KJones1969
    KJones1969 Member Posts: 158
    #2
    Votrient
    I don't know much about the MDX-1106 but am very familiar with Votrient. My husband is in his third month and seems to be tolerating it well with a few side effects. He goes back for his first scans in August to see if the Votrient is helping, I will keep you informed.

    A little history on my hubby, he had a radical nephroectomy in March and they found 5 spots on his lungs that hopefully the Votrient will help.

    I'll keep you all in my thoughts.
  • aditya_fighter
    aditya_fighter Member Posts: 20
    #3
    KJones1969 said:

    Votrient
    I don't know much about the MDX-1106 but am very familiar with Votrient. My husband is in his third month and seems to be tolerating it well with a few side effects. He goes back for his first scans in August to see if the Votrient is helping, I will keep you informed.

    A little history on my hubby, he had a radical nephroectomy in March and they found 5 spots on his lungs that hopefully the Votrient will help.

    I'll keep you all in my thoughts.

    Votrient
    Thanks a lot for your guidance and kind help.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #4
    aditya_fighter said:

    Votrient
    Thanks a lot for your guidance and kind help.

    MDX
    Aditya, I'm on the MDX-1106. In my case it is administered by IV every 3 weeks. Minimal to no side effects. It is an antibody that binds with the T-cells of ones immune system. This prevents the cancer from turning off or blocking the T-cells from identifying the cancer as an invader. Thus the T-cells then attack the cancer destroying it. At this point it is only available in a clinical trial. It is extremely promising. You may want to read my past posts. Good luck.
  • alice124
    alice124 Member Posts: 896 Member
    #5
    MDX1106 AND Votrient Trial
    Aditya,

    I may be the guilty party who confused you regarding these two treatments (Votrient/MDX) by my listing them with a slash rather than an AND. My apology for any confusion and for the delay in my responding to your posting. My job has kept me rather busy lately and I haven’t been able to stay as close to this Board as I otherwise would do.

    My husband is currently participating in the MDX1106 & Votrient trial. They are totally different treatments. MDX 1106 is received as an infusion and Votrient is an oral medication. And so far, it has resulted in a 31% reduction in tumors. His cough has disappeared and he’s feeling better.

    I have no medical background, but I’m not sure why you would be unable to receive HDIL2 after being on Votrient for longer than 3 months. Perhaps this is something your doctor could explain to you. It may reflect a concern in your medical history.

    As far as cost for the HDIL2, it would be very expensive without insurance. John’s treatment required a five day hospital stay (intensive care setting) on two occasions and a total of 24 doses of HDIL2. We were fortunate to have excellent insurance that picked up most of the cost. But without insurance it would have cost us about $250,000.

    I hope this answers some of your questions and you continue to do well on the Votrient. Please let us know what you decide will be your next step.

    __________________________________
    Alice (caregiver for John)
    John – 63 Caucasian
    Diagnosed: 10/14/2011 Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
    Symptoms: weight loss followed by cough
    Surgeries: right nephrectomy - 11/1/2011

    Treatments to date:
    January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
     (discontinued after February 2012 as scan did not merit continuation)

    5/10/2012 – MDX1106 and Votrient trial
    6/20/2012 – first scan indicated 31% reduction in tumors
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #6
    Guidance
    Aditya, I am in the UK and can be of only very limited help but thought I'd start the ball rolling.

    MDX_1106 is very new and still in the trial stages of evaluation. It's in a different category from Votrient and there are members here (come in Alice) who are on trials involving both drugs and you might have been confused by seeing references to "MDX_1106/Votrient". (Alice's Husband John had also earlier been on HDIL2)

    With mergers of drug firms, MDX_1106 is now produced by Bristol Myers Squibb under the name BMS-936558, though it's still referred to by both of these designations.

    You will be able to get lots of help here and on KIDNEY-ONC, which is a more professionally informed email listserv.

    That said, your relatives' advice to contact MD Anderson in Texas for absolutely top-level opinions is wise and I recommend you follow it.

    Meantime, apart from waiting for replies, you could glean a lot of helpful information by doing word-searches here (in the search box at the top right of the screen on which the threads of this forum are listed) and in the Archives from the home page of KIDNEY-ONC.
  • aditya_fighter
    aditya_fighter Member Posts: 20
    #7
    alice124 said:

    MDX1106 AND Votrient Trial
    Aditya,

    I may be the guilty party who confused you regarding these two treatments (Votrient/MDX) by my listing them with a slash rather than an AND. My apology for any confusion and for the delay in my responding to your posting. My job has kept me rather busy lately and I haven’t been able to stay as close to this Board as I otherwise would do.

    My husband is currently participating in the MDX1106 & Votrient trial. They are totally different treatments. MDX 1106 is received as an infusion and Votrient is an oral medication. And so far, it has resulted in a 31% reduction in tumors. His cough has disappeared and he’s feeling better.

    I have no medical background, but I’m not sure why you would be unable to receive HDIL2 after being on Votrient for longer than 3 months. Perhaps this is something your doctor could explain to you. It may reflect a concern in your medical history.

    As far as cost for the HDIL2, it would be very expensive without insurance. John’s treatment required a five day hospital stay (intensive care setting) on two occasions and a total of 24 doses of HDIL2. We were fortunate to have excellent insurance that picked up most of the cost. But without insurance it would have cost us about $250,000.

    I hope this answers some of your questions and you continue to do well on the Votrient. Please let us know what you decide will be your next step.

    __________________________________
    Alice (caregiver for John)
    John – 63 Caucasian
    Diagnosed: 10/14/2011 Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
    Symptoms: weight loss followed by cough
    Surgeries: right nephrectomy - 11/1/2011

    Treatments to date:
    January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
     (discontinued after February 2012 as scan did not merit continuation)

    5/10/2012 – MDX1106 and Votrient trial
    6/20/2012 – first scan indicated 31% reduction in tumors

    MD Anderson Houston
    Thanks to all who have contributed to my newly grown wisdom in this matter.
    Alice, indeed you have rightly pointed out towards the source of my confusion. Nevertheless,I have got some clarity now. I have arranged for an appointment with physicians of MD Anderson Cancer Centre at Houston Texas, on 27th of Aug. I plan to travel and get an evaluation done by them, as to what line of treatment would be good for me. They have indicated, that they require a deposit of $ 26,200 for just evaluation. Can anybody throw some light on this, as it seems to be quite high. However, I am still in a fix and shall take a final call on this, within a day or two. Thanks to all and God bless. Aditya

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