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PLEASE need BRAF or IPI Experiences (the good,bad, ugly)!

Forums General Melanoma Community PLEASE need BRAF or IPI Experiences (the good,bad, ugly)!

  • Post
    killmel
    Participant

    Hi,

     

    I am a newbie here and not sure if I am posting correctly to get some info from MPIPers who are taking or have taken PLX Braf or GSK Braf or IPI compassionate use 

    I am  stage 3 unresectable with a few tumors in my leg. First dx 2006. So far, just have had surgeries.

    My onc gave me 2 options.

    1. Braf inhibitor (Onc says average durable long term response 6-8months) or 

    2. IPI compassionate use (Onc says could have severe autoimune side effects, response rate average 20%.)

    Hi,

     

    I am a newbie here and not sure if I am posting correctly to get some info from MPIPers who are taking or have taken PLX Braf or GSK Braf or IPI compassionate use 

    I am  stage 3 unresectable with a few tumors in my leg. First dx 2006. So far, just have had surgeries.

    My onc gave me 2 options.

    1. Braf inhibitor (Onc says average durable long term response 6-8months) or 

    2. IPI compassionate use (Onc says could have severe autoimune side effects, response rate average 20%.)

    My onc did mention trials combining Braf & MEK drug willbe coming available. Anyone in a BRAF/MEK combo drug trial?

    So here I sit, weighing benefits ve risks of Braf vs IPI. I sincerely would appreciate any feedback.

    Thank you so much for taking the time to post a reply.

    Wendy

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  • Replies
      lhaley
      Participant

      Wendy,

      You've said that you've just had surgeries so far. In that case you are not eligible for the ipi compassionate care. You've had to have something systemic and failed.  I'm not sure about the B-raf drugs.

      I'm in the same decision mode but have to wait 3 months till my next scans to see if lung nodule grows.  Personally in my thoughts right now, I'm planing on holding off with the B-raf till they have some combo's out there. Also want to see if maybe I can have a complete response using something else that will last longer. 

      Best wishes,

      Linda

      Stage IV since 06

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      lhaley
      Participant

      Wendy,

      You've said that you've just had surgeries so far. In that case you are not eligible for the ipi compassionate care. You've had to have something systemic and failed.  I'm not sure about the B-raf drugs.

      I'm in the same decision mode but have to wait 3 months till my next scans to see if lung nodule grows.  Personally in my thoughts right now, I'm planing on holding off with the B-raf till they have some combo's out there. Also want to see if maybe I can have a complete response using something else that will last longer. 

      Best wishes,

      Linda

      Stage IV since 06

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        killmel
        Participant

        Linda,

         

        Thank you for the reply. I forgot to mention that I did take Temodar /chemo pill & had a recurren while on the drug so I did fail the chemotheraphy. I do qualify for Braf & IPI

        I totally agree with you about long term response but I am afraid of the automuine side effects that could result from taking IPI.

        I would love to hear from others who have taken IPI and what their side effects were.

        Wendy

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        killmel
        Participant

        Linda,

         

        Thank you for the reply. I forgot to mention that I did take Temodar /chemo pill & had a recurren while on the drug so I did fail the chemotheraphy. I do qualify for Braf & IPI

        I totally agree with you about long term response but I am afraid of the automuine side effects that could result from taking IPI.

        I would love to hear from others who have taken IPI and what their side effects were.

        Wendy

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      killmel
      Participant

      Sorry, I forgot tomention that I did take Temodar and had a recuurence while on the drug so I did fail a chemo treatment. Thanks Wendy

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      killmel
      Participant

      Sorry, I forgot tomention that I did take Temodar and had a recuurence while on the drug so I did fail a chemo treatment. Thanks Wendy

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      stillhopeful
      Participant

      The choice to me is clear:  I would pick ipi because you have a chance for a durable response which is very rare for BRAF.  You might also search for Anti PD-1 trials.  It is similar to ipi but has fewer side effects.  Initial results are very promising.

      I was on the compassionate use trial, and was a responder.  Actually an over-responder.  I developed colitis and had to go on high-dose steroids which negated much of the ipi benefit.  Because I did have some response, I would have qualified for a second round of ipi, but given the colitis that will not happen.  By the way, the colitis is gone now.

      I don't think you have to worry about what happened to me.  It is very rare at the compassionate use dosage of 3mg.  If I had to do it over again, the only thing I would do differently is I would have looked for anti PD-1 trials before I went on the ipi.  Right now, ipi users are disqualified from anti PD-1 trials.  Perhaps that will change when ipi is approved, but that is only a guess on my part.

      I don't regret going on the ipi trial even though the colitis was no fun!  I am BRAF negative, so I don't have the choice you face.  However, I am looking into trials that can lead to a durable response first.  My next step is adoptive cell transfer therapy (ACT), which is rougher than getting colitis I hear.  However, there is a chance of a durable response, so I'm game.

      Good luck with your decision!

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      stillhopeful
      Participant

      The choice to me is clear:  I would pick ipi because you have a chance for a durable response which is very rare for BRAF.  You might also search for Anti PD-1 trials.  It is similar to ipi but has fewer side effects.  Initial results are very promising.

      I was on the compassionate use trial, and was a responder.  Actually an over-responder.  I developed colitis and had to go on high-dose steroids which negated much of the ipi benefit.  Because I did have some response, I would have qualified for a second round of ipi, but given the colitis that will not happen.  By the way, the colitis is gone now.

      I don't think you have to worry about what happened to me.  It is very rare at the compassionate use dosage of 3mg.  If I had to do it over again, the only thing I would do differently is I would have looked for anti PD-1 trials before I went on the ipi.  Right now, ipi users are disqualified from anti PD-1 trials.  Perhaps that will change when ipi is approved, but that is only a guess on my part.

      I don't regret going on the ipi trial even though the colitis was no fun!  I am BRAF negative, so I don't have the choice you face.  However, I am looking into trials that can lead to a durable response first.  My next step is adoptive cell transfer therapy (ACT), which is rougher than getting colitis I hear.  However, there is a chance of a durable response, so I'm game.

      Good luck with your decision!

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      killmel
      Participant

      Stllhopeful..thank you for sharing your experience.

      I agree with you on the PD-1 trials. I found some MDX1106 trials but the trials were on the east coast & I live on the west coast. The trials require an IV every 2 weeks,& logicistically & financially I can not go back to the easet coast every 2 weeks. It is very frustrating.

       My onc warned me about some of the severe side effects  which could be permanent like (adrenal gland issues & burned out thyroid, etc.). He wanted to be sure that I knew the risks since he has had to treat patients with autoimmune side effects on 3 mg dose. I guess the fear of these side effects is paralizing me to go forward with IPI. But I believe that you are right that IPI is a better choice in the long term.

      While you were on IPI did any of your tumors shrink or go away & remain stable??? Do you know anyone that perhaps has posted that has been a complete responder & remain NED on 3mg without getting the autoimmune type side effects. My onc told me rash & diarrhea is the most common side effect which I can deal with. What are coilitis systems?

      Thanks again for posting

      Wendy

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      killmel
      Participant

      Stllhopeful..thank you for sharing your experience.

      I agree with you on the PD-1 trials. I found some MDX1106 trials but the trials were on the east coast & I live on the west coast. The trials require an IV every 2 weeks,& logicistically & financially I can not go back to the easet coast every 2 weeks. It is very frustrating.

       My onc warned me about some of the severe side effects  which could be permanent like (adrenal gland issues & burned out thyroid, etc.). He wanted to be sure that I knew the risks since he has had to treat patients with autoimmune side effects on 3 mg dose. I guess the fear of these side effects is paralizing me to go forward with IPI. But I believe that you are right that IPI is a better choice in the long term.

      While you were on IPI did any of your tumors shrink or go away & remain stable??? Do you know anyone that perhaps has posted that has been a complete responder & remain NED on 3mg without getting the autoimmune type side effects. My onc told me rash & diarrhea is the most common side effect which I can deal with. What are coilitis systems?

      Thanks again for posting

      Wendy

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        stillhopeful
        Participant

        The colitis I had was long-term diarrhea that would not go away with the normal course of steroids.  Because it could not be controlled, I could not get the 4th dose of ipi. I had to take very high levels of steroids and 2 infusions of Infliximab plus a colonoscopy to be certain the colon was OK.  Eventually it went away.

        I have 2 measurable tumors on lymph nodes.  One appears to be dead (necrosis).  The other probably grew, but there is some slight chance that it was inflamed from being under attack when the last CT scan was done.  So it seems that the ipi did something despite the very high level steroids over a long period of time, and the fact that I did not get the 4th dose.  

        If you go on the ipi trial, you need to be in touch with your trial nurse and/or doctor.  I was given the guidelines of contacting them if I had diarrhea more than 3 times a day, or felt exhausted for several days (this could be a sign of gland distress).  I think I also had to contact them if my temperature reached a certain high level.  I don't have my notes in front of me.  It's important to be completely honest about what is happening to you so that they can respond quickly.

        If you go to the Melanoma International Foundation discussion board, you will find a number of discussions on ipi.  Your oncologist should be able to supply you with the statistics.  Rash and diarrhea are the most common side effects, and these can usually be controlled with over-the -counter drugs or the regular dose of steroids.  It is unusual to have the kind of reaction I had on the 3mg dose.   Responders can have a durable response or stable disease without autoimmune disease.  On the 3 mg dose, I think durable response or stable disease is just under 30%.  Durable response is just under 10%.  People with stable disease can petition to get another round of ipi if there is new growth.  Ask your oncologist what % of the 3 mg people get a severe autoimmune response.  I think it is a very low percent.

        Good luck!

         

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        stillhopeful
        Participant

        The colitis I had was long-term diarrhea that would not go away with the normal course of steroids.  Because it could not be controlled, I could not get the 4th dose of ipi. I had to take very high levels of steroids and 2 infusions of Infliximab plus a colonoscopy to be certain the colon was OK.  Eventually it went away.

        I have 2 measurable tumors on lymph nodes.  One appears to be dead (necrosis).  The other probably grew, but there is some slight chance that it was inflamed from being under attack when the last CT scan was done.  So it seems that the ipi did something despite the very high level steroids over a long period of time, and the fact that I did not get the 4th dose.  

        If you go on the ipi trial, you need to be in touch with your trial nurse and/or doctor.  I was given the guidelines of contacting them if I had diarrhea more than 3 times a day, or felt exhausted for several days (this could be a sign of gland distress).  I think I also had to contact them if my temperature reached a certain high level.  I don't have my notes in front of me.  It's important to be completely honest about what is happening to you so that they can respond quickly.

        If you go to the Melanoma International Foundation discussion board, you will find a number of discussions on ipi.  Your oncologist should be able to supply you with the statistics.  Rash and diarrhea are the most common side effects, and these can usually be controlled with over-the -counter drugs or the regular dose of steroids.  It is unusual to have the kind of reaction I had on the 3mg dose.   Responders can have a durable response or stable disease without autoimmune disease.  On the 3 mg dose, I think durable response or stable disease is just under 30%.  Durable response is just under 10%.  People with stable disease can petition to get another round of ipi if there is new growth.  Ask your oncologist what % of the 3 mg people get a severe autoimmune response.  I think it is a very low percent.

        Good luck!

         

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        LynnLuc
        Participant

        I just finished the first trial ( 12 weeks) of MDX 1106 ( anti PD-1) + injections of 6 peptides last Wednesday. I have my scans on Tuesday and Wednesday I have my app't with Dr Weber and apheresis. As I am hoping  I will still be NED and plan to  do this trial for an additional 12 weeks-then on to boosters of Anti-PD-1  every 3 months for  at least2 years (or more actually…my onc said more than likely I would be kept on it if I remain NED)

        I am excited about this trial!

        As with IL-2 and interferon…this trial also took down my thyroid…HOWEVER…there are studies to show that it is a very good sign for a durable response!! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1977462/pdf/brjcancer00075-0123.pdf

        IT is also believed that my thyroid will recover since it was functioning normally before the trial..if this trial keeps me NED

        …and my thyroid does not recover I do not mind taking synthetic hormone replacement therapy…beats dying from stage 4 melanoma! While my TSH is .003  my T 4 is elevated as well as T 3…so something is still functioning within the thyroid…

        Good Luck with your treatment!! Both Ipi and PLX 4032 ( B raf)  are both good

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        LynnLuc
        Participant

        I just finished the first trial ( 12 weeks) of MDX 1106 ( anti PD-1) + injections of 6 peptides last Wednesday. I have my scans on Tuesday and Wednesday I have my app't with Dr Weber and apheresis. As I am hoping  I will still be NED and plan to  do this trial for an additional 12 weeks-then on to boosters of Anti-PD-1  every 3 months for  at least2 years (or more actually…my onc said more than likely I would be kept on it if I remain NED)

        I am excited about this trial!

        As with IL-2 and interferon…this trial also took down my thyroid…HOWEVER…there are studies to show that it is a very good sign for a durable response!! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1977462/pdf/brjcancer00075-0123.pdf

        IT is also believed that my thyroid will recover since it was functioning normally before the trial..if this trial keeps me NED

        …and my thyroid does not recover I do not mind taking synthetic hormone replacement therapy…beats dying from stage 4 melanoma! While my TSH is .003  my T 4 is elevated as well as T 3…so something is still functioning within the thyroid…

        Good Luck with your treatment!! Both Ipi and PLX 4032 ( B raf)  are both good

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      swissie
      Participant

      Hi Wendy,

      I am a participant of a double blind trial with 10 mg/kg of ipi. I've been on that trial since September 2009 and have had 8 rounds of ipi during that time. Although I am thinking about ending the trial at the moment, I do not regret participating this trial.

      I to had a colitis, for me it was after the 4th infusion (that is an obvious sign that I do get the medicine and not the placebo). I had a terrible night in the bathroom with that, but it ended immediately after I started prednison.

      For the rest I had different versions of rash, itching, headaches and fatigue.

      The reason I want to end the trial now, is that I am exhausted since my last infusion (4 weeks ago). It's getting me depressed, which is not what I want. As I did not have an active tumor, I will never know if ipi did it's work, but I imagine that the 8 rounds should be enough (especially since people seem to do great on 4 rounds of only 3 mg/kg).

      I did not look into the Braf trials, and I can not say anything about that. 

      Good luck with your decision,

      Sabine

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      swissie
      Participant

      Hi Wendy,

      I am a participant of a double blind trial with 10 mg/kg of ipi. I've been on that trial since September 2009 and have had 8 rounds of ipi during that time. Although I am thinking about ending the trial at the moment, I do not regret participating this trial.

      I to had a colitis, for me it was after the 4th infusion (that is an obvious sign that I do get the medicine and not the placebo). I had a terrible night in the bathroom with that, but it ended immediately after I started prednison.

      For the rest I had different versions of rash, itching, headaches and fatigue.

      The reason I want to end the trial now, is that I am exhausted since my last infusion (4 weeks ago). It's getting me depressed, which is not what I want. As I did not have an active tumor, I will never know if ipi did it's work, but I imagine that the 8 rounds should be enough (especially since people seem to do great on 4 rounds of only 3 mg/kg).

      I did not look into the Braf trials, and I can not say anything about that. 

      Good luck with your decision,

      Sabine

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      LynnLuc
      Participant

      I guess it's kind of corny to ask…but did they test you for the B-raf mutation yet? Ipi will more than likely be approved in March so they criteria for systemic treatment will probably not be an issue.

      You should also get your HLA testing done as well as for the various mutations…those things weigh heavy on which trial you can actually get into…

      I had none of those tests when I first started looking into trials…wasted a lot of time getting them…be sure to get them soon! Be armed and ready!

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      LynnLuc
      Participant

      I guess it's kind of corny to ask…but did they test you for the B-raf mutation yet? Ipi will more than likely be approved in March so they criteria for systemic treatment will probably not be an issue.

      You should also get your HLA testing done as well as for the various mutations…those things weigh heavy on which trial you can actually get into…

      I had none of those tests when I first started looking into trials…wasted a lot of time getting them…be sure to get them soon! Be armed and ready!

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        killmel
        Participant

        Everyone, thank you for your replies.

        Lynn,

        Thank you for the suggestion. I have been tested.I am Braf positive. & HLA-2 positive.

        I was wondering what is apheresis.Would appreciate knowing how it is done.

        Wendy

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        killmel
        Participant

        Everyone, thank you for your replies.

        Lynn,

        Thank you for the suggestion. I have been tested.I am Braf positive. & HLA-2 positive.

        I was wondering what is apheresis.Would appreciate knowing how it is done.

        Wendy

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      ValinMtl
      Participant

      Hi Wendy, I tested negative for BRAF so ipi was my oncologist''s next choice of drug.  I actually wanted to do 'ipi' so it all worked out.  In August, my tumors were rampant and I believe if I had not been able to get on to the trial in September, I would be in terrible shape right now.  I have had very little side effects…fatigue a little (but doesn't hold me back), a bit more gaseous than before but really nothing to fear!!!  I have done 4 rounds so now I am waiting for CT scan results..and praying it's working.  Visually, my cutaneous tumors seem to have come to a halt as far as spreading and some are actually drying up as well the bluish tinge in my leg seems to not be as bad…so hopefully, I will have good results.  I have noticed a slight growth on the left groin area and I will be contacting my oncologist on Tuesday when she is in….but my clinical nurse is thinking that is something that appears to be common..maybe lymph node reaction.

      All in all..this is SO MUCH BETTER than interferon to date…Val  (compassionate ipi trial)

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      ValinMtl
      Participant

      Hi Wendy, I tested negative for BRAF so ipi was my oncologist''s next choice of drug.  I actually wanted to do 'ipi' so it all worked out.  In August, my tumors were rampant and I believe if I had not been able to get on to the trial in September, I would be in terrible shape right now.  I have had very little side effects…fatigue a little (but doesn't hold me back), a bit more gaseous than before but really nothing to fear!!!  I have done 4 rounds so now I am waiting for CT scan results..and praying it's working.  Visually, my cutaneous tumors seem to have come to a halt as far as spreading and some are actually drying up as well the bluish tinge in my leg seems to not be as bad…so hopefully, I will have good results.  I have noticed a slight growth on the left groin area and I will be contacting my oncologist on Tuesday when she is in….but my clinical nurse is thinking that is something that appears to be common..maybe lymph node reaction.

      All in all..this is SO MUCH BETTER than interferon to date…Val  (compassionate ipi trial)

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      Sharyn
      Participant

      Hi Wendy,

      Treatment decisions are so hard to make, aren't they? I'm B-RAF negative, so that was never an option for me, but I am now on the Ipi Compassionate use trial. I just finished the first induction phase (12 weeks, ipi every 3 weeks), and am just starting the maintenance phase (nothing for 12 weeks, then a scan). Unlike a lot of other people, I have had no side effects like those I was warned about. I did have one bout of diarrhea, but I think that was more due to what I had eaten, not the ipi. I've had no rash or itchiness or anything else.

      To make things more complicated, I'm going to throw another option into the mix. It's PV-10 intraleasional injections. I noticed you said your mel was only in your leg, so I would assume that all your lesions are either cutaneous or sub-cutaneous. I did this treatment when it was in a phase 2 trial. It is now available in a compassionate use trial. The clinical trial page says it's not recruiting yet, but I do know for a fact that St Luke's in Bethlehem, PA is now accepting participants, so maybe some of the others have started too. The link is below. I responded really well to this treatment, but we didn't realize when I started that the mel had already gone to my uterus, so once it was picked up, I had to withdraw from the study. This treatment involves injecting the tumors with rose bengal (PV-10). It stings like the devil for a minute, but then it's gone. The main side effect is photosensitivity. Most of the tumours in my leg that were injected, disappeared within a few weeks. So check this out. Ipi will still be there later if you need it. It may even be an approved treatment by then.

      Hope this helps

      Hugs

      Sharyn, Stage IV

      http://clinicaltrials.gov/ct2/show/NCT00521053?term=PV-10+and+melanoma&rank=1 

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      Sharyn
      Participant

      Hi Wendy,

      Treatment decisions are so hard to make, aren't they? I'm B-RAF negative, so that was never an option for me, but I am now on the Ipi Compassionate use trial. I just finished the first induction phase (12 weeks, ipi every 3 weeks), and am just starting the maintenance phase (nothing for 12 weeks, then a scan). Unlike a lot of other people, I have had no side effects like those I was warned about. I did have one bout of diarrhea, but I think that was more due to what I had eaten, not the ipi. I've had no rash or itchiness or anything else.

      To make things more complicated, I'm going to throw another option into the mix. It's PV-10 intraleasional injections. I noticed you said your mel was only in your leg, so I would assume that all your lesions are either cutaneous or sub-cutaneous. I did this treatment when it was in a phase 2 trial. It is now available in a compassionate use trial. The clinical trial page says it's not recruiting yet, but I do know for a fact that St Luke's in Bethlehem, PA is now accepting participants, so maybe some of the others have started too. The link is below. I responded really well to this treatment, but we didn't realize when I started that the mel had already gone to my uterus, so once it was picked up, I had to withdraw from the study. This treatment involves injecting the tumors with rose bengal (PV-10). It stings like the devil for a minute, but then it's gone. The main side effect is photosensitivity. Most of the tumours in my leg that were injected, disappeared within a few weeks. So check this out. Ipi will still be there later if you need it. It may even be an approved treatment by then.

      Hope this helps

      Hugs

      Sharyn, Stage IV

      http://clinicaltrials.gov/ct2/show/NCT00521053?term=PV-10+and+melanoma&rank=1 

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      Jim M.
      Participant

      Hi Wendy,

       I had 4 doses of Ipi at 10mg/kg. I had no tumor as I went into the trial with resected melanoma. Mostly my side effects were mild except for the severe headaches I had for 2 weeks. An MRI revealed I had hypophysitis (swelling of the pituitary gland). My pituitary gland regained it's normal size but it's function hasn't come back. For over 2 years I've been on a steroid as a hormone replacement. Hypophysitis, colitis, or a severe rash are conditions called immune breakthrough events and correlate with best outcomes (less chance of a recurrence). My oncologist said my immune response was at least 5 times over baseline and he sees that response in 10-20% of patients. How he came to that conclusion was through doing immune assays from apherisis.

       I had apheresis (also called leukaphereisis) done 3 times. First they access a vein in each arm to put in an iv ( in one hospital I understand they access 1 vein in the neck). The veins are flushed to make sure there is a free flow. While I'm lying on my back on a cot these ivs are hooked up to a cell separator machine. When this is in place for the next 3 hours I'd be lying on my back while blood leaves me through the right vein. The blood then goes through the cell separator machine where the blood is divided into white blood cells, red blood cells and plasma. Slowly these three are collected in bags. The whole while the rest of my blood comes back to me through the iv on my left arm. The oncologist is most interested in the white blood cells and conducts immune assays (some kind of research). The first aphereisis was to do a baseline of the immune system, and I think to determine the level of dendritic cells. The second apheresis is to do a comparison. That's when my doctor saw the big immune response (and many more dentritic cells). The third apheresis was done to determine if I had a sustained response. It showed I did. That is basically the process.

       Hope this helps and God Bless,

       

       Jim M.

       stage 3C

       

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      Jim M.
      Participant

      Hi Wendy,

       I had 4 doses of Ipi at 10mg/kg. I had no tumor as I went into the trial with resected melanoma. Mostly my side effects were mild except for the severe headaches I had for 2 weeks. An MRI revealed I had hypophysitis (swelling of the pituitary gland). My pituitary gland regained it's normal size but it's function hasn't come back. For over 2 years I've been on a steroid as a hormone replacement. Hypophysitis, colitis, or a severe rash are conditions called immune breakthrough events and correlate with best outcomes (less chance of a recurrence). My oncologist said my immune response was at least 5 times over baseline and he sees that response in 10-20% of patients. How he came to that conclusion was through doing immune assays from apherisis.

       I had apheresis (also called leukaphereisis) done 3 times. First they access a vein in each arm to put in an iv ( in one hospital I understand they access 1 vein in the neck). The veins are flushed to make sure there is a free flow. While I'm lying on my back on a cot these ivs are hooked up to a cell separator machine. When this is in place for the next 3 hours I'd be lying on my back while blood leaves me through the right vein. The blood then goes through the cell separator machine where the blood is divided into white blood cells, red blood cells and plasma. Slowly these three are collected in bags. The whole while the rest of my blood comes back to me through the iv on my left arm. The oncologist is most interested in the white blood cells and conducts immune assays (some kind of research). The first aphereisis was to do a baseline of the immune system, and I think to determine the level of dendritic cells. The second apheresis is to do a comparison. That's when my doctor saw the big immune response (and many more dentritic cells). The third apheresis was done to determine if I had a sustained response. It showed I did. That is basically the process.

       Hope this helps and God Bless,

       

       Jim M.

       stage 3C

       

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      LynnLuc
      Participant

      Basically they stick a needle in one arm which the blood goes out into a line and into a machine that separates the T cells from the rest of the blood and the remainning blood goes back into the body…it's not like a lot of blood is out of your body at any given time in the process…it's painless except for the needle pricks…

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      LynnLuc
      Participant

      Basically they stick a needle in one arm which the blood goes out into a line and into a machine that separates the T cells from the rest of the blood and the remainning blood goes back into the body…it's not like a lot of blood is out of your body at any given time in the process…it's painless except for the needle pricks…

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      killmel
      Participant

      Thank you so much for all your replies. You are all wonderful people.

      I wish you all a lifetime of NED

      Wendy

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      killmel
      Participant

      Thank you so much for all your replies. You are all wonderful people.

      I wish you all a lifetime of NED

      Wendy

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About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.