What next – Second opinions? – Melanoma Research Foundation

This topic has 24 replies, 4 voices, and was last updated 13 years, 6 months ago by o2bcheri.

Post

- November 3, 2011 at 7:59 pm
- Quote
cwu
Participant
Hi all,

Hi all,

My father just finished his third dose of Yervoy and his onc is not optimistic it will work and told us there are limited options if it doesnt . He said we should also start looking into hospice care. We are in shock, disbelief, and having difficult time accepting this. I am trying to get a second opinion from another facility and was wondering if you all have any advice on facility, melanoma doctor, contact info, and any tips. I am still on the fence about whether I should tell his doctor that we are trying to get a second opinion because I dont want to do anything that may compromise dad's care. The problem is dad cannot travel since his leg is swollen and lesions break and bleed so I was hoping to get a doctor to do it via emails/phone calls if I can send them medical records and pictures. I am willing to travel to meet the doctor but dad is not able to.

I am going to look at anti-pd1 trials too but want to see if you can advise me about getting second opinion.

Chau

Viewing 11 reply threads

Replies

- - November 3, 2011 at 8:27 pm
  - Quote
  jim Breitfeller
  Participant
  Chau,
  
  Don't throw in the towel yet. It is still early in the Yervoy treatment.
  
  http://1.bp.blogspot.com/-ZkKD3zog9FQ/Tp7AX7qd1cI/AAAAAAAAAjk/cjqReUDy9ks/s1600/Yervoy%2Bdosing%2Bassessment%2Bschedule%2B2011.jpg
  
  You need to give Yervoy time to activate the T-cells.
  
  Best regard
  
  Jimmy B
  - November 3, 2011 at 8:54 pm
    
    Quote
    cwu
    Participant
    
    Hi Jimmy B.,
    
    I dont know if you saw my post a few days ago but his ALC dropped. Week 0 was 1.58, week 4 was 1.98, and week 7 was 1.5. Trying to schedule to talk to the doctor again but I am so confused, upset, etc.
    
    Thanks, Chau
  - November 3, 2011 at 8:54 pm
    
    Quote
    cwu
    Participant
    
    Hi Jimmy B.,
    
    I dont know if you saw my post a few days ago but his ALC dropped. Week 0 was 1.58, week 4 was 1.98, and week 7 was 1.5. Trying to schedule to talk to the doctor again but I am so confused, upset, etc.
    
    Thanks, Chau
  - November 3, 2011 at 8:54 pm
    
    Quote
    cwu
    Participant
    
    Hi Jimmy B.,
    
    I dont know if you saw my post a few days ago but his ALC dropped. Week 0 was 1.58, week 4 was 1.98, and week 7 was 1.5. Trying to schedule to talk to the doctor again but I am so confused, upset, etc.
    
    Thanks, Chau
- - November 3, 2011 at 8:27 pm
  - Quote
  jim Breitfeller
  Participant
  Chau,
  
  Don't throw in the towel yet. It is still early in the Yervoy treatment.
  
  http://1.bp.blogspot.com/-ZkKD3zog9FQ/Tp7AX7qd1cI/AAAAAAAAAjk/cjqReUDy9ks/s1600/Yervoy%2Bdosing%2Bassessment%2Bschedule%2B2011.jpg
  
  You need to give Yervoy time to activate the T-cells.
  
  Best regard
  
  Jimmy B
- - November 3, 2011 at 8:27 pm
  - Quote
  jim Breitfeller
  Participant
  Chau,
  
  Don't throw in the towel yet. It is still early in the Yervoy treatment.
  
  http://1.bp.blogspot.com/-ZkKD3zog9FQ/Tp7AX7qd1cI/AAAAAAAAAjk/cjqReUDy9ks/s1600/Yervoy%2Bdosing%2Bassessment%2Bschedule%2B2011.jpg
  
  You need to give Yervoy time to activate the T-cells.
  
  Best regard
  
  Jimmy B
- - November 3, 2011 at 8:42 pm
  - Quote
  MichaelFL
  Participant
  Have they checked his ALC (absolute lympocyte count)? If so, has it gone up at all during treatment?
  - November 3, 2011 at 8:50 pm
    
    Quote
    cwu
    Participant
    
    This is one of the reasons why I am so confused and upset. His ALC was 1.58 at week 0, 1.98 at week 4, and 1.5 at week 7. So it dropped at week 7. Is there no hope if it drops?I am trying to see if I can talk to his onco again and to understand the prognosis because i dont understand.
    
    Chau
  - November 3, 2011 at 8:59 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Chau,
    
    Can you oncologist check for IL-2 in the blood? The Tregs may be consuming all IL-2 and starving the T-cells to death.
    
    If you father can tolerate the HD IL-2 treatment, this may be a way to break the tolerance.
  - November 3, 2011 at 9:11 pm
    
    Quote
    cwu
    Participant
    
    Jimmy B.,
    
    Do they need to do special bloodwork to check for IL-2 or is that normally done when they do bloodwork prior to Yervoy infusion? How does IL-2 show up on blood test results? I will ask his doctor when I speak to him. I dont know that dad is willing to get more treatment, it is likely he will not. As for IL-2, I dont know too much about it but it seems to be very toxic. His oncologist doesnt think he can tolerate chemo (decarbazine).
    
    Thanks Jimmy B.
    
    Chau
  - November 3, 2011 at 9:11 pm
    
    Quote
    cwu
    Participant
    
    Jimmy B.,
    
    Do they need to do special bloodwork to check for IL-2 or is that normally done when they do bloodwork prior to Yervoy infusion? How does IL-2 show up on blood test results? I will ask his doctor when I speak to him. I dont know that dad is willing to get more treatment, it is likely he will not. As for IL-2, I dont know too much about it but it seems to be very toxic. His oncologist doesnt think he can tolerate chemo (decarbazine).
    
    Thanks Jimmy B.
    
    Chau
  - November 3, 2011 at 9:11 pm
    
    Quote
    cwu
    Participant
    
    Jimmy B.,
    
    Do they need to do special bloodwork to check for IL-2 or is that normally done when they do bloodwork prior to Yervoy infusion? How does IL-2 show up on blood test results? I will ask his doctor when I speak to him. I dont know that dad is willing to get more treatment, it is likely he will not. As for IL-2, I dont know too much about it but it seems to be very toxic. His oncologist doesnt think he can tolerate chemo (decarbazine).
    
    Thanks Jimmy B.
    
    Chau
  - November 3, 2011 at 8:59 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Chau,
    
    Can you oncologist check for IL-2 in the blood? The Tregs may be consuming all IL-2 and starving the T-cells to death.
    
    If you father can tolerate the HD IL-2 treatment, this may be a way to break the tolerance.
  - November 3, 2011 at 8:59 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Chau,
    
    Can you oncologist check for IL-2 in the blood? The Tregs may be consuming all IL-2 and starving the T-cells to death.
    
    If you father can tolerate the HD IL-2 treatment, this may be a way to break the tolerance.
  - November 3, 2011 at 8:50 pm
    
    Quote
    cwu
    Participant
    
    This is one of the reasons why I am so confused and upset. His ALC was 1.58 at week 0, 1.98 at week 4, and 1.5 at week 7. So it dropped at week 7. Is there no hope if it drops?I am trying to see if I can talk to his onco again and to understand the prognosis because i dont understand.
    
    Chau
  - November 3, 2011 at 8:50 pm
    
    Quote
    cwu
    Participant
    
    This is one of the reasons why I am so confused and upset. His ALC was 1.58 at week 0, 1.98 at week 4, and 1.5 at week 7. So it dropped at week 7. Is there no hope if it drops?I am trying to see if I can talk to his onco again and to understand the prognosis because i dont understand.
    
    Chau
- - November 3, 2011 at 8:42 pm
  - Quote
  MichaelFL
  Participant
  Have they checked his ALC (absolute lympocyte count)? If so, has it gone up at all during treatment?
- - November 3, 2011 at 8:42 pm
  - Quote
  MichaelFL
  Participant
  Have they checked his ALC (absolute lympocyte count)? If so, has it gone up at all during treatment?
- - November 3, 2011 at 10:06 pm
  - Quote
  o2bcheri
  Participant
  neoplas.org something different… at this point.. or at any point. i have more faith in something new and different..
  
  hospice is the end of the road…
  
  good luck… prayers with you…
- - November 3, 2011 at 10:06 pm
  - Quote
  o2bcheri
  Participant
  neoplas.org something different… at this point.. or at any point. i have more faith in something new and different..
  
  hospice is the end of the road…
  
  good luck… prayers with you…
- - November 3, 2011 at 10:06 pm
  - Quote
  o2bcheri
  Participant
  neoplas.org something different… at this point.. or at any point. i have more faith in something new and different..
  
  hospice is the end of the road…
  
  good luck… prayers with you…
- - November 3, 2011 at 10:06 pm
  - Quote
  o2bcheri
  Participant
  neoplas.org something different… at this point.. or at any point. i have more faith in something new and different..
  
  hospice is the end of the road…
  
  good luck… prayers with you…
- - November 3, 2011 at 10:06 pm
  - Quote
  o2bcheri
  Participant
  neoplas.org something different… at this point.. or at any point. i have more faith in something new and different..
  
  hospice is the end of the road…
  
  good luck… prayers with you…
- - November 3, 2011 at 10:06 pm
  - Quote
  o2bcheri
  Participant
  neoplas.org something different… at this point.. or at any point. i have more faith in something new and different..
  
  hospice is the end of the road…
  
  good luck… prayers with you…

Viewing 11 reply threads

You must be logged in to reply to this topic.

What next – Second opinions?

About the MRF Patient Forum

Popular Topics

What next – Second opinions?

About the MRF Patient Forum

Popular Topics

Topic Tags