Had 1st Yervoy Infusion on Wednesday
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Had 1st Yervoy Infusion on Wednesday

› Forums › General Melanoma Community › Had 1st Yervoy Infusion on Wednesday

  • Post
    • August 19, 2016 at 10:15 pm
    dmturner
    Participant

    Hi All:

    I had posted a couple weeks ago that I was going to go the immunotherapy route instead of the CLND of the right groin.  Okay maybe on the fence on what to do.  Well no turning back now.  Did the first treatment on Wednesday.  Did not know it would be 4 hours long, I guess I assumed it was 2 hours.  So far no side effects.  Went to work the next day.  I work in retail and on my feet for 8 hours.  I still have swelling of my right foot/let, I am thinking from the SLNB.  That is one of the reason I did not want to the CLND cause I am prone to swelling.

    My oncologist still brought up the CLND that morning.  He does understand my decision.  I told him if I was diagnosed a year ago then that would of course been the decision.

    I will keep you all posted on side effects.  Next infusion is Sept. 7th.

    Be Brave!

    Donna, TX

Viewing 8 reply threads
  • Replies
      • August 19, 2016 at 10:25 pm
      Jon M
      Participant

      Hi Donna,

      Im getting ready to decided what to do as far as if i want to do a CLND or start immunotherapy route. I just had my wide excsion done along with a skin graft and SLNB 2 weeks ago and got my results yesterday that the did spread to the SN. Im really unsure of anything at this point i dont know what i want to do. I go back on Moday to meet with the doctor to get my options.

       

       

      • August 19, 2016 at 10:25 pm
      Jon M
      Participant

      Hi Donna,

      Im getting ready to decided what to do as far as if i want to do a CLND or start immunotherapy route. I just had my wide excsion done along with a skin graft and SLNB 2 weeks ago and got my results yesterday that the did spread to the SN. Im really unsure of anything at this point i dont know what i want to do. I go back on Moday to meet with the doctor to get my options.

       

       

      • August 19, 2016 at 10:25 pm
      Jon M
      Participant

      Hi Donna,

      Im getting ready to decided what to do as far as if i want to do a CLND or start immunotherapy route. I just had my wide excsion done along with a skin graft and SLNB 2 weeks ago and got my results yesterday that the did spread to the SN. Im really unsure of anything at this point i dont know what i want to do. I go back on Moday to meet with the doctor to get my options.

       

       

      • August 19, 2016 at 11:32 pm
      jennunicorn
      Participant

      Hope it goes smoothly with little side effects for you! I have gotten used to the long infusion days, but it is a bit misleading when you hear the infusion only takes 90 minutes. But, like for me, I wake up bright and early for the 45 minute drive to the hospital, get blood drawn, see my onc an hour after the blood draw so she has those results first, then after I see her I usually have 30 minutes before I check into the infusion clinic, then once inside the infusion clinic the long wait for the drug to be made and brought upstairs, usually 45-60 minutes, THEN the infusion starts for 90 minutes, then another 15 or so for the flush and THEN I can finally go home! It takes quite a bit out of me, and certainly not something we get informed much about before we start this thing. I get my second maintenance dose on Monday, so my long day is coming up 🙂

      All the best,

      • August 19, 2016 at 11:32 pm
      jennunicorn
      Participant

      Hope it goes smoothly with little side effects for you! I have gotten used to the long infusion days, but it is a bit misleading when you hear the infusion only takes 90 minutes. But, like for me, I wake up bright and early for the 45 minute drive to the hospital, get blood drawn, see my onc an hour after the blood draw so she has those results first, then after I see her I usually have 30 minutes before I check into the infusion clinic, then once inside the infusion clinic the long wait for the drug to be made and brought upstairs, usually 45-60 minutes, THEN the infusion starts for 90 minutes, then another 15 or so for the flush and THEN I can finally go home! It takes quite a bit out of me, and certainly not something we get informed much about before we start this thing. I get my second maintenance dose on Monday, so my long day is coming up 🙂

      All the best,

        • August 19, 2016 at 11:42 pm
        dmturner
        Participant

        Thanks, Jenn!!  My husband did not know about the maintenance doses, till this past Wednesday.  Oops.  Insurance, of course, starts over again 1st of the year. 

        Besides not knowing the length of time, my oncologist was running over 1 1/2 hours late.  So, we were thinking we would be home a bit after 12 but was home after 4:30.  Dang Dallas traffic.

        Best, D

        • August 19, 2016 at 11:42 pm
        dmturner
        Participant

        Thanks, Jenn!!  My husband did not know about the maintenance doses, till this past Wednesday.  Oops.  Insurance, of course, starts over again 1st of the year. 

        Besides not knowing the length of time, my oncologist was running over 1 1/2 hours late.  So, we were thinking we would be home a bit after 12 but was home after 4:30.  Dang Dallas traffic.

        Best, D

        • August 19, 2016 at 11:50 pm
        jennunicorn
        Participant

        Ah, yes, always great when the docs are running late! 

        Not everyone does the maintenance doses. My oncologist said that not many people make it through all of the 4 main doses, due to serious side effects popping up that makes them have to stop treatment. So, there's probably not too many like me that have gotten this far. And I think some people would rather stop with the main 4 even if it went fairly well. Probably just a personal choice at that point…. my thinking is if it's going well for me then why stop earlier than I need to. Get as much of it in me to make sure I don't deal with this stuff again! 

         

        • August 19, 2016 at 11:50 pm
        jennunicorn
        Participant

        Ah, yes, always great when the docs are running late! 

        Not everyone does the maintenance doses. My oncologist said that not many people make it through all of the 4 main doses, due to serious side effects popping up that makes them have to stop treatment. So, there's probably not too many like me that have gotten this far. And I think some people would rather stop with the main 4 even if it went fairly well. Probably just a personal choice at that point…. my thinking is if it's going well for me then why stop earlier than I need to. Get as much of it in me to make sure I don't deal with this stuff again! 

         

        • August 19, 2016 at 11:50 pm
        jennunicorn
        Participant

        Ah, yes, always great when the docs are running late! 

        Not everyone does the maintenance doses. My oncologist said that not many people make it through all of the 4 main doses, due to serious side effects popping up that makes them have to stop treatment. So, there's probably not too many like me that have gotten this far. And I think some people would rather stop with the main 4 even if it went fairly well. Probably just a personal choice at that point…. my thinking is if it's going well for me then why stop earlier than I need to. Get as much of it in me to make sure I don't deal with this stuff again! 

         

        • August 19, 2016 at 11:42 pm
        dmturner
        Participant

        Thanks, Jenn!!  My husband did not know about the maintenance doses, till this past Wednesday.  Oops.  Insurance, of course, starts over again 1st of the year. 

        Besides not knowing the length of time, my oncologist was running over 1 1/2 hours late.  So, we were thinking we would be home a bit after 12 but was home after 4:30.  Dang Dallas traffic.

        Best, D

      • August 19, 2016 at 11:32 pm
      jennunicorn
      Participant

      Hope it goes smoothly with little side effects for you! I have gotten used to the long infusion days, but it is a bit misleading when you hear the infusion only takes 90 minutes. But, like for me, I wake up bright and early for the 45 minute drive to the hospital, get blood drawn, see my onc an hour after the blood draw so she has those results first, then after I see her I usually have 30 minutes before I check into the infusion clinic, then once inside the infusion clinic the long wait for the drug to be made and brought upstairs, usually 45-60 minutes, THEN the infusion starts for 90 minutes, then another 15 or so for the flush and THEN I can finally go home! It takes quite a bit out of me, and certainly not something we get informed much about before we start this thing. I get my second maintenance dose on Monday, so my long day is coming up 🙂

      All the best,

      • August 22, 2016 at 10:34 pm
      slh4448
      Participant

      Hi Donna,

      I came across your post. I'm starting Yervoy 10mg this Thursday. May I ask what dose you are on? I really only ask because you mentioned insurance in one of your posts.

      I just wanted to share that my oncologist has told me that I will be able to get Yervoy 10mg free from BMS. My doctor's office will file any appeal if necessary but he has told me that he has several patients getting the drug for free. Might have to pay for administration cost, etc., but the drug is being offered free by BMS especially for the 10mg dose.

      In case you didn't know about this, I wanted to share my experience. Take care,

      Stacy

        • August 23, 2016 at 12:14 am
        jennunicorn
        Participant

        I am on the same program, it is awesome! I pay $130 for infusion and nothing for the drug, great deal!

        • August 23, 2016 at 12:14 am
        jennunicorn
        Participant

        I am on the same program, it is awesome! I pay $130 for infusion and nothing for the drug, great deal!

        • August 23, 2016 at 12:14 am
        jennunicorn
        Participant

        I am on the same program, it is awesome! I pay $130 for infusion and nothing for the drug, great deal!

        • August 23, 2016 at 10:22 am
        youngann
        Participant

        I'll be having my first infusion 8/24 and will be doing 3mg/mL. Until we meet our $12,000 out of pocket cost, our insurance will only cover 70%. Thank goodness BMS agreed to pay up to $25,000 towards the cost of the drug.

        • August 23, 2016 at 10:22 am
        youngann
        Participant

        I'll be having my first infusion 8/24 and will be doing 3mg/mL. Until we meet our $12,000 out of pocket cost, our insurance will only cover 70%. Thank goodness BMS agreed to pay up to $25,000 towards the cost of the drug.

        • August 23, 2016 at 10:22 am
        youngann
        Participant

        I'll be having my first infusion 8/24 and will be doing 3mg/mL. Until we meet our $12,000 out of pocket cost, our insurance will only cover 70%. Thank goodness BMS agreed to pay up to $25,000 towards the cost of the drug.

        • August 23, 2016 at 8:53 pm
        dmturner
        Participant

        10 mg.  What is BMS? 

        Thanks in advance!!

        -Donna

        • August 23, 2016 at 8:53 pm
        dmturner
        Participant

        10 mg.  What is BMS? 

        Thanks in advance!!

        -Donna

        • August 23, 2016 at 8:53 pm
        dmturner
        Participant

        10 mg.  What is BMS? 

        Thanks in advance!!

        -Donna

        • August 23, 2016 at 9:24 pm
        dmturner
        Participant

        Bristol Myers Squibb

        I think we make too much money.  Not much over for 2 person household.  I work in retail and my husband gets SS.

        • August 23, 2016 at 9:24 pm
        dmturner
        Participant

        Bristol Myers Squibb

        I think we make too much money.  Not much over for 2 person household.  I work in retail and my husband gets SS.

        • August 23, 2016 at 9:24 pm
        dmturner
        Participant

        Bristol Myers Squibb

        I think we make too much money.  Not much over for 2 person household.  I work in retail and my husband gets SS.

        • August 24, 2016 at 4:44 pm
        slh4448
        Participant

        I'm not sure about household income in relation to getting free drug. It's my understanding that it doesn't matter. 

        • August 24, 2016 at 4:44 pm
        slh4448
        Participant

        I'm not sure about household income in relation to getting free drug. It's my understanding that it doesn't matter. 

        • August 24, 2016 at 4:44 pm
        slh4448
        Participant

        I'm not sure about household income in relation to getting free drug. It's my understanding that it doesn't matter. 

      • August 22, 2016 at 10:34 pm
      slh4448
      Participant

      Hi Donna,

      I came across your post. I'm starting Yervoy 10mg this Thursday. May I ask what dose you are on? I really only ask because you mentioned insurance in one of your posts.

      I just wanted to share that my oncologist has told me that I will be able to get Yervoy 10mg free from BMS. My doctor's office will file any appeal if necessary but he has told me that he has several patients getting the drug for free. Might have to pay for administration cost, etc., but the drug is being offered free by BMS especially for the 10mg dose.

      In case you didn't know about this, I wanted to share my experience. Take care,

      Stacy

      • August 22, 2016 at 10:34 pm
      slh4448
      Participant

      Hi Donna,

      I came across your post. I'm starting Yervoy 10mg this Thursday. May I ask what dose you are on? I really only ask because you mentioned insurance in one of your posts.

      I just wanted to share that my oncologist has told me that I will be able to get Yervoy 10mg free from BMS. My doctor's office will file any appeal if necessary but he has told me that he has several patients getting the drug for free. Might have to pay for administration cost, etc., but the drug is being offered free by BMS especially for the 10mg dose.

      In case you didn't know about this, I wanted to share my experience. Take care,

      Stacy

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