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Yervoy questions
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Yervoy questions

› Forums › General Melanoma Community › Yervoy questions

  • Post
    • January 14, 2012 at 4:39 pm
    bruski1959
    Participant

      We are considering Yervoy treatment for my wife Jackie who has metastatic melanoma. Started on finger last March, which was amputated in May with good margin. Then spread to axial lymph nodes on same arm, which were removed in August. 2 were macro, 5 were micro, 6 had no melanoma. PET scan in November showed recurrance in same axial lymph nodes, bright spots on liver, and potential places to occur in lungs. PET scan at Mayo last week shows axial lymph nodes brighter, spots on liver are brighter, and spots in lungs have started to light up too.

      We are considering Yervoy treatment for my wife Jackie who has metastatic melanoma. Started on finger last March, which was amputated in May with good margin. Then spread to axial lymph nodes on same arm, which were removed in August. 2 were macro, 5 were micro, 6 had no melanoma. PET scan in November showed recurrance in same axial lymph nodes, bright spots on liver, and potential places to occur in lungs. PET scan at Mayo last week shows axial lymph nodes brighter, spots on liver are brighter, and spots in lungs have started to light up too.

      We have done the paperwork for Yervoy co-pay assistance.

      Have contacted our insurance company United Health Care and the specialist pharmacy, and Yervoy is covered, but not sure what co-pay will be until the oncologist writes a prescription.

      First  question is the potential side affects sound pretty terrible, but oncologists we have spoken with have not seen the severe side affects, more the rashes, and treatment with prednisone helps alleviate the symptoms. Is this pretty much the experience of others who have taken Yervoy?

      Jackie's oncologist mentioned that he has seen more issues with the 3rd and 4th infusions than with the 1st and 2nd infusions. Is this the experience of others who have taken Yervoy?

      I have heard numbers like 20% co-pay, and I have heard between $60,000 and $120,000 for total cost of Yervoy treatment. The Yervoy co-pay program looks like you pay $50 per infusion, and they will pay maximum of $5000. Trying to figure out what actual out of pocket expenses are for this for planning purposes. What has been the experience of others with paying for Yervoy?

      Saw something about not being able to use health care reimbursement funds for Yervoy. We max out our health care reimbursement, and last year ran out in August, due to the several surgeries and hospitalizations. Is that really true you can't use health care reimbursement to help pay for Yervoy copay?

      Has anybody used Yervoy with GP10? If so, were results any better than those who use Yervoy by itself?

      The oncologists we have spoken to indicate that it is better to use Yervoy sooner than later, earlier on in the disease process, that it takes longer to start working, but it also lasts longer. Can anybody comment on this?

      Appreciate any advice or answers anybody can provide.

      Thanks,

      Bruce

    Viewing 5 reply threads
    • Replies
        • January 16, 2012 at 12:39 pm
        Pippa
        Participant

          Dear Bruce,

          First of all, I am sorry to hear about your wife's condition. 

          I had melanoma stage IV; tumors in my brain, lymph nodes, arm, leg and abdomen. After stereo tactical radiation therapy and 2 surgerys I started Yeroy on March 1st 2011. I have an ongoing complete response since June 2011. So although the response rates are low: keep believing in an positive outcome. 

          I didn't had a lot of side effects. Only a skin rash and being fatigue so now and then. All side effect are well treatable if you react immediatly. So make sure your doctor has experience with Yervoy and stay allert yourself. Call the hospital if you have any doubt.

          The clinical trials didn't show any benefit with GP10 (you can google the trial results). 

          Yervoy takes some time to start working and if you have any side effects, the body can handle it better if it is in good shape. So start as soon as possible would be my suggestion.

          I wish you and your wife all the best.

          Regards,

          Astrid

          • January 16, 2012 at 12:39 pm
          Pippa
          Participant

            Dear Bruce,

            First of all, I am sorry to hear about your wife's condition. 

            I had melanoma stage IV; tumors in my brain, lymph nodes, arm, leg and abdomen. After stereo tactical radiation therapy and 2 surgerys I started Yeroy on March 1st 2011. I have an ongoing complete response since June 2011. So although the response rates are low: keep believing in an positive outcome. 

            I didn't had a lot of side effects. Only a skin rash and being fatigue so now and then. All side effect are well treatable if you react immediatly. So make sure your doctor has experience with Yervoy and stay allert yourself. Call the hospital if you have any doubt.

            The clinical trials didn't show any benefit with GP10 (you can google the trial results). 

            Yervoy takes some time to start working and if you have any side effects, the body can handle it better if it is in good shape. So start as soon as possible would be my suggestion.

            I wish you and your wife all the best.

            Regards,

            Astrid

            • January 16, 2012 at 12:39 pm
            Pippa
            Participant

              Dear Bruce,

              First of all, I am sorry to hear about your wife's condition. 

              I had melanoma stage IV; tumors in my brain, lymph nodes, arm, leg and abdomen. After stereo tactical radiation therapy and 2 surgerys I started Yeroy on March 1st 2011. I have an ongoing complete response since June 2011. So although the response rates are low: keep believing in an positive outcome. 

              I didn't had a lot of side effects. Only a skin rash and being fatigue so now and then. All side effect are well treatable if you react immediatly. So make sure your doctor has experience with Yervoy and stay allert yourself. Call the hospital if you have any doubt.

              The clinical trials didn't show any benefit with GP10 (you can google the trial results). 

              Yervoy takes some time to start working and if you have any side effects, the body can handle it better if it is in good shape. So start as soon as possible would be my suggestion.

              I wish you and your wife all the best.

              Regards,

              Astrid

              • January 20, 2012 at 10:30 pm
              TSchulz
              Participant

                Bruce, 

                My short answer to your question is I don't know what the true costs of Yervoy are but I did want to throw a suggestion your way. 

                If possible, you may want to find a clinical trial that includes ipi as a part of the trial.  I happen to be on a trial where ipi is a component of it and the manufacutre donated the drug to the trial.  Therefore, no cost to me or my insurance company – they should be thanking me 🙂

                About the side effects – I was really afraid of taking ipi given all the serious potential side effects.  I received my 4th dose last week and so far it has been fine.  I've had only a bit of minor/moderate itching to this point. 

                The best of luck to you both as you navigate this life changing event. 

                Troy

                  • January 23, 2012 at 3:26 pm
                  bruski1959
                  Participant

                    Hi Troy,

                    Thanks for your response. Checked out the other ipi trials and it looks like Jackie is not eligible due to the various exclusion criteria. Found out our health insurance coverage does cover Yervoy under medical coverage, subject to co-pay, annual deductible, and annual maxiumum out of pocket amounts, which we put money aside in health care reimbursement funds to cover this and all our other out of pocket health care expenses. Jackie is meeting with surgeon today about having a port installed for infusion and blood draws as her veins are terrible, and they no longer draw out of her left arm following lymph node removal surgery, which had okay veins. Likely the port will be installed this week, and the Yervoy paperwork was underway Friday between oncologist office and specialty pharmacy. We have a local cancer center where Jackie will have her infusions and it is connected to the hospital where she gets her blood draws.

                    Jackie's major concern is side effects. Seems that side effects when caught and treated early are manageable. She is already on a low dose of prednisone, and has previously tolerated higher dosage of predinose, so we feel pretty good about her bodies ability to deal with the predisone side affects.

                    Liver biopsy last week confirmed melanoma metastases. PET scan also showed lymph node recurrance, as well as a couple spots in her lungs have some FDG uptake, and the liver metastases too.

                    Hopefully Jackie will have the port installed this week, and get the first Yervoy infusion as well.  Will update with how she handles the treatment. What we hear is that most people handle 1st and 2nd infusions fairly well, and start to have more side effects with 3rd and 4th infusions.

                    Jackie has had a lifetime of battling chronic medical conditions, so this is the latest and I would say the most difficult battle she has faced. We're hoping and praying that Yervoy delivers results for her like so many that we have read about here.

                    Thanks,
                    Bruce

                    • January 23, 2012 at 3:26 pm
                    bruski1959
                    Participant

                      Hi Troy,

                      Thanks for your response. Checked out the other ipi trials and it looks like Jackie is not eligible due to the various exclusion criteria. Found out our health insurance coverage does cover Yervoy under medical coverage, subject to co-pay, annual deductible, and annual maxiumum out of pocket amounts, which we put money aside in health care reimbursement funds to cover this and all our other out of pocket health care expenses. Jackie is meeting with surgeon today about having a port installed for infusion and blood draws as her veins are terrible, and they no longer draw out of her left arm following lymph node removal surgery, which had okay veins. Likely the port will be installed this week, and the Yervoy paperwork was underway Friday between oncologist office and specialty pharmacy. We have a local cancer center where Jackie will have her infusions and it is connected to the hospital where she gets her blood draws.

                      Jackie's major concern is side effects. Seems that side effects when caught and treated early are manageable. She is already on a low dose of prednisone, and has previously tolerated higher dosage of predinose, so we feel pretty good about her bodies ability to deal with the predisone side affects.

                      Liver biopsy last week confirmed melanoma metastases. PET scan also showed lymph node recurrance, as well as a couple spots in her lungs have some FDG uptake, and the liver metastases too.

                      Hopefully Jackie will have the port installed this week, and get the first Yervoy infusion as well.  Will update with how she handles the treatment. What we hear is that most people handle 1st and 2nd infusions fairly well, and start to have more side effects with 3rd and 4th infusions.

                      Jackie has had a lifetime of battling chronic medical conditions, so this is the latest and I would say the most difficult battle she has faced. We're hoping and praying that Yervoy delivers results for her like so many that we have read about here.

                      Thanks,
                      Bruce

                      • January 23, 2012 at 3:26 pm
                      bruski1959
                      Participant

                        Hi Troy,

                        Thanks for your response. Checked out the other ipi trials and it looks like Jackie is not eligible due to the various exclusion criteria. Found out our health insurance coverage does cover Yervoy under medical coverage, subject to co-pay, annual deductible, and annual maxiumum out of pocket amounts, which we put money aside in health care reimbursement funds to cover this and all our other out of pocket health care expenses. Jackie is meeting with surgeon today about having a port installed for infusion and blood draws as her veins are terrible, and they no longer draw out of her left arm following lymph node removal surgery, which had okay veins. Likely the port will be installed this week, and the Yervoy paperwork was underway Friday between oncologist office and specialty pharmacy. We have a local cancer center where Jackie will have her infusions and it is connected to the hospital where she gets her blood draws.

                        Jackie's major concern is side effects. Seems that side effects when caught and treated early are manageable. She is already on a low dose of prednisone, and has previously tolerated higher dosage of predinose, so we feel pretty good about her bodies ability to deal with the predisone side affects.

                        Liver biopsy last week confirmed melanoma metastases. PET scan also showed lymph node recurrance, as well as a couple spots in her lungs have some FDG uptake, and the liver metastases too.

                        Hopefully Jackie will have the port installed this week, and get the first Yervoy infusion as well.  Will update with how she handles the treatment. What we hear is that most people handle 1st and 2nd infusions fairly well, and start to have more side effects with 3rd and 4th infusions.

                        Jackie has had a lifetime of battling chronic medical conditions, so this is the latest and I would say the most difficult battle she has faced. We're hoping and praying that Yervoy delivers results for her like so many that we have read about here.

                        Thanks,
                        Bruce

                      • January 20, 2012 at 10:30 pm
                      TSchulz
                      Participant

                        Bruce, 

                        My short answer to your question is I don't know what the true costs of Yervoy are but I did want to throw a suggestion your way. 

                        If possible, you may want to find a clinical trial that includes ipi as a part of the trial.  I happen to be on a trial where ipi is a component of it and the manufacutre donated the drug to the trial.  Therefore, no cost to me or my insurance company – they should be thanking me 🙂

                        About the side effects – I was really afraid of taking ipi given all the serious potential side effects.  I received my 4th dose last week and so far it has been fine.  I've had only a bit of minor/moderate itching to this point. 

                        The best of luck to you both as you navigate this life changing event. 

                        Troy

                        • January 20, 2012 at 10:30 pm
                        TSchulz
                        Participant

                          Bruce, 

                          My short answer to your question is I don't know what the true costs of Yervoy are but I did want to throw a suggestion your way. 

                          If possible, you may want to find a clinical trial that includes ipi as a part of the trial.  I happen to be on a trial where ipi is a component of it and the manufacutre donated the drug to the trial.  Therefore, no cost to me or my insurance company – they should be thanking me 🙂

                          About the side effects – I was really afraid of taking ipi given all the serious potential side effects.  I received my 4th dose last week and so far it has been fine.  I've had only a bit of minor/moderate itching to this point. 

                          The best of luck to you both as you navigate this life changing event. 

                          Troy

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