The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Failed BRAF! This Sucks! What Now?

Forums Cutaneous Melanoma Community Failed BRAF! This Sucks! What Now?

  • Post
    Jan in OC
    Participant

    Just got back from UCLA with my husband.  Results of his latest CT were not good.  Some of his mets in his liver/lungs have doubled in size and small ones that were not even measured before are a lot bigger.   Doc immediately pulled him from BRAF.  We had almost a year on this drug, but it's time to move on!  Doc gave us some future options, but seemed to be pushing for option 1 over the others and I would like some advice. 

    Just got back from UCLA with my husband.  Results of his latest CT were not good.  Some of his mets in his liver/lungs have doubled in size and small ones that were not even measured before are a lot bigger.   Doc immediately pulled him from BRAF.  We had almost a year on this drug, but it's time to move on!  Doc gave us some future options, but seemed to be pushing for option 1 over the others and I would like some advice. 

    Option 1-Eisai clinical trial of E-7080 (VEGF)  supposed to shrink the blood vessels to the cancer cells???   We cannot do this if we choose any other treatment option before this one. BUT, I have not seen a lot about this on the board and am asking if anyone has experience/info?

    Option 2- Compassionate IPI Trial

    Option 3- Chemo

    Option 4-IL-2

    Option 5-MEK / PI3K inhibitor (doc said phase 1 trial, low doses only, may not be effective). 

    We are supposed to go back  first week of January with a new plan, so any suggestions/advice would be appreciated.  My husband is pretty bummed right now and my emotions are all over the place!  Getting as much info as I can and having a plan will help.

    Thanks

    Jan

     

    Loading spinner
Viewing 17 reply threads
  • Replies
      lhaley
      Participant

      Your right, your news does suck.  If your husband goes with option 1 how long before he can have scans to see if this is working?  No matter what he decides on you just have to believe that it's the right choice.

      Sending prayers and hugs,

      Linda

      Loading spinner
      lhaley
      Participant

      Your right, your news does suck.  If your husband goes with option 1 how long before he can have scans to see if this is working?  No matter what he decides on you just have to believe that it's the right choice.

      Sending prayers and hugs,

      Linda

      Loading spinner
      James from Sydney
      Participant

      Hi Jan

      i noticed a post below titled "Bone Mets…."  you might like to contact emily who responded on that post, her Husband is on a MEK / P13 Trial and having success. 

      best wishes

      James

      Loading spinner
      James from Sydney
      Participant

      Hi Jan

      i noticed a post below titled "Bone Mets…."  you might like to contact emily who responded on that post, her Husband is on a MEK / P13 Trial and having success. 

      best wishes

      James

      Loading spinner
      Jerry from Cape Cod
      Participant

      Hi,

      Just my opinion.  Do the VEGF first as all the other treatments are still available.  If you go to any of the 2-5 options first you can't get back to the VEGF.

      Best wishes,

       

      Jerrry from Cape Cod

      Loading spinner
      Jerry from Cape Cod
      Participant

      Hi,

      Just my opinion.  Do the VEGF first as all the other treatments are still available.  If you go to any of the 2-5 options first you can't get back to the VEGF.

      Best wishes,

       

      Jerrry from Cape Cod

      Loading spinner
        Jan in OC
        Participant

        Thanks Jerry,

        All I can do is research and present my findings to my husband…ultimately, he says it is his body, his cancer, his decision.  I will be here to hold everything together and support him.

        Jan

        Loading spinner
        Jan in OC
        Participant

        Thanks Jerry,

        All I can do is research and present my findings to my husband…ultimately, he says it is his body, his cancer, his decision.  I will be here to hold everything together and support him.

        Jan

        Loading spinner
        LynnLuc
        Participant

        I agree with Jerry…you don't want to close any doors…there is a lot of information about VEGF coming out…much of it positive.

        Holiday wishes, Lynn

        Loading spinner
        LynnLuc
        Participant

        I agree with Jerry…you don't want to close any doors…there is a lot of information about VEGF coming out…much of it positive.

        Holiday wishes, Lynn

        Loading spinner
        Jan in OC
        Participant

        I have spent all week looking for info on this and can find very little.  The side effects are scary and results are unknown,  so my husband has been reluctant to jump into this trial.   He has also postponed the challenge of IL-2. 

        Ultimately, it is his decision!!   I simply get him as much information as I can, to help him make the choice that he feels is best for him.  And than support him, no matter which treatment he decides to do.

        If anyone has more info on  VEGF, please share it with us.

        Thank you

        Jan

        Loading spinner
        Jan in OC
        Participant

        I have spent all week looking for info on this and can find very little.  The side effects are scary and results are unknown,  so my husband has been reluctant to jump into this trial.   He has also postponed the challenge of IL-2. 

        Ultimately, it is his decision!!   I simply get him as much information as I can, to help him make the choice that he feels is best for him.  And than support him, no matter which treatment he decides to do.

        If anyone has more info on  VEGF, please share it with us.

        Thank you

        Jan

        Loading spinner
        killmel
        Participant

        Hi Jan,

         

        I too cannot find anything on this trial. What are the the UCLA doctors saying the results are thus far with their patients??? I would alsoaskthem tocontact other doctors at different location sites for this trial & at leas tget a sense how patients are doing and the side effects.

        Curious, why did you husband not chose IPI since that was the 2nd option?

        Good Luck

        Loading spinner
        killmel
        Participant

        Hi Jan,

         

        I too cannot find anything on this trial. What are the the UCLA doctors saying the results are thus far with their patients??? I would alsoaskthem tocontact other doctors at different location sites for this trial & at leas tget a sense how patients are doing and the side effects.

        Curious, why did you husband not chose IPI since that was the 2nd option?

        Good Luck

        Loading spinner
        Jan in OC
        Participant

        We just got word that he failed the BRAF four days before Christmas.  My husband decided to just enjoy the holidays, not worry too much (I do that for him) and postpone the decision until after Christmas.  We have to wait 28-30 days to even get into a new trial, so one week did not seem to matter much.  He will make a decision this week.  But, the Dr said if we choose IPI, we cannot qualify for the VEGF.

        There are not a lot of results for the VEGF as it is very new and not open everywhere yet.  Dirk is concerned about trying a brand new trial with no improvement stats and lots of risky side effects.  

        He wants to make sure that the quality of his life will not suffer long term damage while trying to improve the quantity.  This will be a consideration when he chooses treatment.

        Jan

        Loading spinner
        Jan in OC
        Participant

        We just got word that he failed the BRAF four days before Christmas.  My husband decided to just enjoy the holidays, not worry too much (I do that for him) and postpone the decision until after Christmas.  We have to wait 28-30 days to even get into a new trial, so one week did not seem to matter much.  He will make a decision this week.  But, the Dr said if we choose IPI, we cannot qualify for the VEGF.

        There are not a lot of results for the VEGF as it is very new and not open everywhere yet.  Dirk is concerned about trying a brand new trial with no improvement stats and lots of risky side effects.  

        He wants to make sure that the quality of his life will not suffer long term damage while trying to improve the quantity.  This will be a consideration when he chooses treatment.

        Jan

        Loading spinner
      emilypen
      Participant

      Hi Jan,

      Saw your posting. My husband is on option 5 – mek/p13k inhibitor and is doing really well. His next scans are on Dec. 23rd.

      He's only been on it for 4 months, but his first round of scans showed , PET – reduced uptake of all areas- more than 75% and  CT over all 12% reduction of tumours and bone mets. He started in the second cohort of patients so he is on quite a low dose but the results have been great for him.

      Only side effects have been, rash, a little fatigue and occasional upset stomach,

      Feel free to contact me if you have any questions,

       

      Emily

      Loading spinner
      emilypen
      Participant

      Hi Jan,

      Saw your posting. My husband is on option 5 – mek/p13k inhibitor and is doing really well. His next scans are on Dec. 23rd.

      He's only been on it for 4 months, but his first round of scans showed , PET – reduced uptake of all areas- more than 75% and  CT over all 12% reduction of tumours and bone mets. He started in the second cohort of patients so he is on quite a low dose but the results have been great for him.

      Only side effects have been, rash, a little fatigue and occasional upset stomach,

      Feel free to contact me if you have any questions,

       

      Emily

      Loading spinner
        Jan in OC
        Participant

        Thanks Emily, I will research this trial too!

        It's frustrating because we have to wait 28-30 days for several of these trials.  I am reading all of the material on the trials, but there are so many definitions that I don't understand…feel like I need a medical degree!

        Jan

        Loading spinner
        Jan in OC
        Participant

        Thanks Emily, I will research this trial too!

        It's frustrating because we have to wait 28-30 days for several of these trials.  I am reading all of the material on the trials, but there are so many definitions that I don't understand…feel like I need a medical degree!

        Jan

        Loading spinner
        killmel
        Participant

        Hi Emily,

        I am so glad your husband is going well. I hope your scans are wonderful & lots of shrinkage

         

        I could not find the clinical trial. gov for mek/p13k inhibitor. I would appreciate a link or perhapsthe NCT number.

         

        Thanks,

        Loading spinner
        killmel
        Participant

        Hi Emily,

        I am so glad your husband is going well. I hope your scans are wonderful & lots of shrinkage

         

        I could not find the clinical trial. gov for mek/p13k inhibitor. I would appreciate a link or perhapsthe NCT number.

         

        Thanks,

        Loading spinner
        emilypen
        Participant

        Here's the trial :

        http://clinicaltrials.gov/ct2/show/NCT01155453

        I know it says they're not recruiting anywhere but Canada, but i know fromt talking with our doctor that they are.

        A lot of the most recent cancer journal articles are talking about the fact that combo drugs are the way to go. We are so thankfull to get this trial.

        My hubby was only predicted to live 6-9 months and he's feeling better 8 months in than he has in a year.

        I'll post the next scan results when i get them.

        Jan, if you want any info on all the trial let me know,  i have all the paperwork and have asked a million questions while we decided if this was the way to go.

         

        Emily

        Loading spinner
        emilypen
        Participant

        Here's the trial :

        http://clinicaltrials.gov/ct2/show/NCT01155453

        I know it says they're not recruiting anywhere but Canada, but i know fromt talking with our doctor that they are.

        A lot of the most recent cancer journal articles are talking about the fact that combo drugs are the way to go. We are so thankfull to get this trial.

        My hubby was only predicted to live 6-9 months and he's feeling better 8 months in than he has in a year.

        I'll post the next scan results when i get them.

        Jan, if you want any info on all the trial let me know,  i have all the paperwork and have asked a million questions while we decided if this was the way to go.

         

        Emily

        Loading spinner
      killmel
      Participant

      Jan- sorry for your news…your decision is very difficult..I hope that you can get some feedback from others. I am a newbie and trying to learn about the treatments.

       

      PLEASE can someone give me the clinical trial gov. link or the NCT number for Option 5-MEK / PI3K inhibitor & Option 1-Eisai clinical trial of E-7080 (VEGF) I am vey interested in reading these trials. Thanks Douglas

       

      God Bless

      Loading spinner
      killmel
      Participant

      Jan- sorry for your news…your decision is very difficult..I hope that you can get some feedback from others. I am a newbie and trying to learn about the treatments.

       

      PLEASE can someone give me the clinical trial gov. link or the NCT number for Option 5-MEK / PI3K inhibitor & Option 1-Eisai clinical trial of E-7080 (VEGF) I am vey interested in reading these trials. Thanks Douglas

       

      God Bless

      Loading spinner
        Jan in OC
        Participant

        Sorry, I know this a long response!

        Ok, cried myself to sleep last night!  Fired up the computer this morning and let the fingers fly!!

        Option # 1 – Eisai Trial NCT01136967  Looked up a few things: There have been limited (5) trials so far with this drug (about 300 patients) in Europe, USA & Japan.

         

        An Open-Label, 2-Cohort, Multicenter, Study of E7080 in Previously Treated Subjects With Unresectable Stage III or Stage IV Melanoma

        Description:

        This is a multicenter, open-label, 2-cohort, phase 2 study to assess the objective response rate of E7080 in previously treated subjects with American Joint Committee on Cancer (AJCC) unresectable stage III or stage IV melanoma and disease progression.

        Cohort 1 will enroll subjects not harboring the V600E BRAF mutation with disease progression following first-line standard of care therapy, and

        Cohort 2 will enroll subjects harboring the V600E BRAF mutation with disease progression following BRAF-V600E-targeted therapy. Eligible subjects must have measurable disease according to modified Response Evaluation Criteria in Solid Tumors (RECIST 1.1)

        You take 24 mg of E7080 pills once per day (3 pills, two 10mg and one 4 mg).

        Visits to Dr. on day 1 and day 15 of 28 day cycles for blood & urine testing, with  CT and/or MRI every 8 weeks (2 cycles) and every 24 weeks (6 cycles) a bone scan.

        Just some of the exclusions:

        1. Melanoma of intraocular origin or brain or leptomeningeal metastases.

        2. More than 1 prior systemic chemotherapy regimen for unresectable stage III or stage IV disease (if BRAF V600E mutation negative) or not previously treated with BRAF V600E-targeted therapy (if BRAF V600E mutation positive)

        3. Any anti-cancer treatment within 21 days or any investigational agent within 30 days prior to the first dose of  study drug.

        Exclusion #2 is why we cannot come back to this if we choose the other options.  i just don't know if it worth the time and side effects to try this first.

         

        Very common Side effects: seen in more than 1 in 10 patients

        •  high blood pressure (makes sense as the drug is supposed to shrink the blood vessels to the cancer)  

        • protein in the urine (may indicate damage to kidneys)

        • sore mouth and/ or ulceration

        •Dysphonia (impairment in ability to produce voice sounds)???

        • nausea or vomiting,  diarrhea,feeling tired or unwell,  loss of appetite, weight loss, headache

        There are lots of other side effects listed that are common (anywhere from 1 to 10 people in every 100) too many to list, but some are pretty scary sounding!!!

        Exclusion #2 is why we cannot come back to this if we choose the other options.  i just don't know if it worth the time and side effects to try this first.

        There are no results listed anywhere (I guess that's why it's called investigational).

        I know there are some experts out there in MRF land…give me your input regarding this trial over the other options.

        Thanks

        Jan (wife to Dirk, stage IV; mets in liver, lungs, kidney, bone, external chest; tried surgery, Interferon and BRAF) 

        Loading spinner
        Jan in OC
        Participant

        Sorry, I know this a long response!

        Ok, cried myself to sleep last night!  Fired up the computer this morning and let the fingers fly!!

        Option # 1 – Eisai Trial NCT01136967  Looked up a few things: There have been limited (5) trials so far with this drug (about 300 patients) in Europe, USA & Japan.

         

        An Open-Label, 2-Cohort, Multicenter, Study of E7080 in Previously Treated Subjects With Unresectable Stage III or Stage IV Melanoma

        Description:

        This is a multicenter, open-label, 2-cohort, phase 2 study to assess the objective response rate of E7080 in previously treated subjects with American Joint Committee on Cancer (AJCC) unresectable stage III or stage IV melanoma and disease progression.

        Cohort 1 will enroll subjects not harboring the V600E BRAF mutation with disease progression following first-line standard of care therapy, and

        Cohort 2 will enroll subjects harboring the V600E BRAF mutation with disease progression following BRAF-V600E-targeted therapy. Eligible subjects must have measurable disease according to modified Response Evaluation Criteria in Solid Tumors (RECIST 1.1)

        You take 24 mg of E7080 pills once per day (3 pills, two 10mg and one 4 mg).

        Visits to Dr. on day 1 and day 15 of 28 day cycles for blood & urine testing, with  CT and/or MRI every 8 weeks (2 cycles) and every 24 weeks (6 cycles) a bone scan.

        Just some of the exclusions:

        1. Melanoma of intraocular origin or brain or leptomeningeal metastases.

        2. More than 1 prior systemic chemotherapy regimen for unresectable stage III or stage IV disease (if BRAF V600E mutation negative) or not previously treated with BRAF V600E-targeted therapy (if BRAF V600E mutation positive)

        3. Any anti-cancer treatment within 21 days or any investigational agent within 30 days prior to the first dose of  study drug.

        Exclusion #2 is why we cannot come back to this if we choose the other options.  i just don't know if it worth the time and side effects to try this first.

         

        Very common Side effects: seen in more than 1 in 10 patients

        •  high blood pressure (makes sense as the drug is supposed to shrink the blood vessels to the cancer)  

        • protein in the urine (may indicate damage to kidneys)

        • sore mouth and/ or ulceration

        •Dysphonia (impairment in ability to produce voice sounds)???

        • nausea or vomiting,  diarrhea,feeling tired or unwell,  loss of appetite, weight loss, headache

        There are lots of other side effects listed that are common (anywhere from 1 to 10 people in every 100) too many to list, but some are pretty scary sounding!!!

        Exclusion #2 is why we cannot come back to this if we choose the other options.  i just don't know if it worth the time and side effects to try this first.

        There are no results listed anywhere (I guess that's why it's called investigational).

        I know there are some experts out there in MRF land…give me your input regarding this trial over the other options.

        Thanks

        Jan (wife to Dirk, stage IV; mets in liver, lungs, kidney, bone, external chest; tried surgery, Interferon and BRAF) 

        Loading spinner
        killmel
        Participant

        Jan,

         

        If I were you, I would ask your doctors what the results have been thus far. They should at least be able to tell you how many patients are on theis trial at UCLA & how are the patients doing. You got nothing to lose by emailing the UUCLA doctor.

        Just my 2 cents!

        W

        Loading spinner
        killmel
        Participant

        Jan,

         

        If I were you, I would ask your doctors what the results have been thus far. They should at least be able to tell you how many patients are on theis trial at UCLA & how are the patients doing. You got nothing to lose by emailing the UUCLA doctor.

        Just my 2 cents!

        W

        Loading spinner
        Jan in OC
        Participant

        I asked that already…no results,  trial just opened up, only taking 10 patients at UCLA.

        Jan

        Loading spinner
        Jan in OC
        Participant

        I asked that already…no results,  trial just opened up, only taking 10 patients at UCLA.

        Jan

        Loading spinner
        killmel
        Participant

        Hi Jan,

        Many MPIPERs are on IPI compassionate use getting positive results. Since you are not able to find any info on Option 1-Eisai clinical trial of E-7080 (VEGF) perhaps it is safer to gowith IPI compassionate use.

        What do your doctors says about IPI for your husband. Do they have IPI at UCLA?

         

        Good luck with your decision.

        Wayne

         

         

         

         

         

        Loading spinner
        killmel
        Participant

        Hi Jan,

        Many MPIPERs are on IPI compassionate use getting positive results. Since you are not able to find any info on Option 1-Eisai clinical trial of E-7080 (VEGF) perhaps it is safer to gowith IPI compassionate use.

        What do your doctors says about IPI for your husband. Do they have IPI at UCLA?

         

        Good luck with your decision.

        Wayne

         

         

         

         

         

        Loading spinner
      LynnLuc
      Participant

      Here is something I did find in my Feeds-not so easy of a read….http://www.curehunter.com/public/pubmed20978347.do

       

      Immunotherapies based on adoptive cell transfer are highly effective in the treatment of metastatic melanoma, but the use of this approach in other cancer histologies has been hampered by the identification of appropriate target molecules. Immunologic approaches targeting tumor vasculature provide a means for the therapy of multiple solid tumor types. We developed a method to target tumor vasculature, using genetically redirected syngeneic or autologous T cells. Mouse and human T cells were engineered to express a chimeric antigen receptor (CAR) targeted against VEGFR-2, which is overexpressed in tumor vasculature and is responsible for VEGF-mediated tumor progression and metastasis. Mouse and human T cells expressing the relevant VEGFR-2 CARs mediated specific immune responses against VEGFR-2 protein as well as VEGFR-2-expressing cells in vitro. A single dose of VEGFR-2 CAR-engineered mouse T cells plus exogenous IL-2 significantly inhibited the growth of 5 different types of established, vascularized syngeneic tumors in 2 different strains of mice and prolonged the survival of mice. T cells transduced with VEGFR-2 CAR showed durable and increased tumor infiltration, correlating with their antitumor effect. This approach provides a potential method for the gene therapy of a variety of human cancers.
      Loading spinner
      LynnLuc
      Participant

      Here is something I did find in my Feeds-not so easy of a read….http://www.curehunter.com/public/pubmed20978347.do

       

      Immunotherapies based on adoptive cell transfer are highly effective in the treatment of metastatic melanoma, but the use of this approach in other cancer histologies has been hampered by the identification of appropriate target molecules. Immunologic approaches targeting tumor vasculature provide a means for the therapy of multiple solid tumor types. We developed a method to target tumor vasculature, using genetically redirected syngeneic or autologous T cells. Mouse and human T cells were engineered to express a chimeric antigen receptor (CAR) targeted against VEGFR-2, which is overexpressed in tumor vasculature and is responsible for VEGF-mediated tumor progression and metastasis. Mouse and human T cells expressing the relevant VEGFR-2 CARs mediated specific immune responses against VEGFR-2 protein as well as VEGFR-2-expressing cells in vitro. A single dose of VEGFR-2 CAR-engineered mouse T cells plus exogenous IL-2 significantly inhibited the growth of 5 different types of established, vascularized syngeneic tumors in 2 different strains of mice and prolonged the survival of mice. T cells transduced with VEGFR-2 CAR showed durable and increased tumor infiltration, correlating with their antitumor effect. This approach provides a potential method for the gene therapy of a variety of human cancers.
      Loading spinner
      MDKirkland
      Participant

      Sorry to hear your story.

      I would suggest the Eisai drug as the first course. 

      I did ipi in 2006.  I think there is great promise in that, but you can always go down that path if the E-7080 drug does not pan out. 

      I have done Interferon and ILK in a bio chemo, suprising that they are not offering bio-chemo (though that that damn near killed me last year). 

      I am currently considering the same drug, as my mets have come back in the bone.  My decision point is next week as well. 

      Best of luck to you, Mark

      Loading spinner
      MDKirkland
      Participant

      Sorry to hear your story.

      I would suggest the Eisai drug as the first course. 

      I did ipi in 2006.  I think there is great promise in that, but you can always go down that path if the E-7080 drug does not pan out. 

      I have done Interferon and ILK in a bio chemo, suprising that they are not offering bio-chemo (though that that damn near killed me last year). 

      I am currently considering the same drug, as my mets have come back in the bone.  My decision point is next week as well. 

      Best of luck to you, Mark

      Loading spinner
      Jan in OC
      Participant

      Thanks everyone.  My husband is choosing the Eisai E7080 Trial.  We did not want to throw that chance away and wish we had it later.  Ya just never know what will work. The doctor seems to thing that we will know pretty quick if it is working or not.  We are trying to get appointments now for qualifying (full body scan, echo, ECG, bone scan, and blood work).  As soon as we get this done, hopefully we can resume treatment.  The waiting 30 days without any treatment makes me nuts!

      We still have some options in reserve, so we are staying positive.

      Jan

      Loading spinner
      Jan in OC
      Participant

      Thanks everyone.  My husband is choosing the Eisai E7080 Trial.  We did not want to throw that chance away and wish we had it later.  Ya just never know what will work. The doctor seems to thing that we will know pretty quick if it is working or not.  We are trying to get appointments now for qualifying (full body scan, echo, ECG, bone scan, and blood work).  As soon as we get this done, hopefully we can resume treatment.  The waiting 30 days without any treatment makes me nuts!

      We still have some options in reserve, so we are staying positive.

      Jan

      Loading spinner
        smap
        Participant

        Hi Jan,

         

        My mother is also stage IV with many of the mets that your husband has.  She failed the BRAF with MEK (only patient out of 30 with continued growth) and has been taken off of the E7080 after 6 weeks on because of ocular swelling.  We were really upset to hear that her eye condition would disqualify her from this and many other trials.  The dr. says she will be blind if she continues these meds.  Now we are in the God-awful Limbo waiting for 28 days and trying to decide what to do next.  She is also considering ipi. but I am remembering some fo the early research I did on adoptive cell.  She has severe asthma and is also on oral steroids so I don't know if this would also disqualify her from adopt. cell.  The dr. seemed, for the first time, not to know what to do for her and she is pretty discouraged.  We're trying to stay positive since there are no brain mets, and we're thankful for that.  Has anyone else done recent research on adoptive cell?

         

        Thanks!  I'm new to this forum and have already benefitted from reading previous posts.

        Stephanie in Alabama (daughter to Jennifer 44yrs old:  stage IV mets in liver, kidneys, lungs, spleen, breasts, bones and muscles).  

        Loading spinner
        Jan in OC
        Participant

        Stephanie, I'm sorry to hear about your Mom's battle.  The waiting and limbo have always been hard for us to handle.  It just makes me nuts!  I don't have any answers on adoptive cell.  You might want to search for it on here.  I am sure someone on here can help with that.

        Just to update, I have posted more recently.  While trying to qualify for the E7080 trial in January, they found a lesion in my husband's brain.  That bumped us from a lot of trials, so we opted to go right into IPI. We already did the testing and waiting, so there was no more wasted time.  He has had two IPI infusions so far, however, we are still waiting on UCLA to schedule brain radiation.  They did another MRI last Wed for planning purposes.  The one lesion has grown from 3mm to 8mm in the last month and there is now another 6mm lesion in a different area of the brain.  What the hell are they waiting for????  They certainly do not seem to be in any hurry to treat him.  As with everyone, the waiting in crazy!

        There are a lot of people on here who can give you hope and support so continue to drop in and write.  This board has saved my sanity several times when I have been on the edge.

        Jan in OC, (wife to Dirk,  8/09; stage IV, mets in liver, lungs, kidney, brain; surgery; one month HD Interferon & one month self injections; eleven months BRAF,currently  IPI)

        Loading spinner
        smap
        Participant

        Jan,

         

        So sorry to hear about your husbands brain mets.  I know how hard it is to sit and wait around for the drs. to call and schedule for things to be done.  I know once we were told by a nurse that the dr. would be calling soon at about 3:00 p.m. and he didn't call back until the next day when my mom was already in the hospital.  Thank God we took her on, because she had a blood clot, now she takes shots twice daily for blood thinner.  Yes, melanoma sucks.  The whole thing sucks and sometimes it's good to just be able to say that to someone who understands.  My parents are divorced so my mom is living with my grandparents and my aunt.  They are a tremendous support to her, but my grandmother is now wearing quite thin.  My sister and I are having to step up the support, which we are so happy to do, but both have young children so it's difficult.  

         

        Anyway, I hope your husband gets his radiation soon and that the ipi is working.  We are probably going to be on ipi within the next few weeks because mom can't get on much of anything becuase of her eyes and asthma.  I looked into adoptive cell and they said no b/c of asthma meds.  

        How is your husband handling the side effects of ipi?  I hope they aren't too greivous.  We are heading back up to TN to see the dr. on Tues.  I know it is one day at a time with melanoma, so I hope today was a good day for you both.

         

        Stephanie in Mobile, AL (daughter to Jennifer;  stage IV mets in liver, spleen, kidneys, lungs, bones, muscles;  failed braf and e7080)

        Loading spinner
        smap
        Participant

        Jan,

         

        So sorry to hear about your husbands brain mets.  I know how hard it is to sit and wait around for the drs. to call and schedule for things to be done.  I know once we were told by a nurse that the dr. would be calling soon at about 3:00 p.m. and he didn't call back until the next day when my mom was already in the hospital.  Thank God we took her on, because she had a blood clot, now she takes shots twice daily for blood thinner.  Yes, melanoma sucks.  The whole thing sucks and sometimes it's good to just be able to say that to someone who understands.  My parents are divorced so my mom is living with my grandparents and my aunt.  They are a tremendous support to her, but my grandmother is now wearing quite thin.  My sister and I are having to step up the support, which we are so happy to do, but both have young children so it's difficult.  

         

        Anyway, I hope your husband gets his radiation soon and that the ipi is working.  We are probably going to be on ipi within the next few weeks because mom can't get on much of anything becuase of her eyes and asthma.  I looked into adoptive cell and they said no b/c of asthma meds.  

        How is your husband handling the side effects of ipi?  I hope they aren't too greivous.  We are heading back up to TN to see the dr. on Tues.  I know it is one day at a time with melanoma, so I hope today was a good day for you both.

         

        Stephanie in Mobile, AL (daughter to Jennifer;  stage IV mets in liver, spleen, kidneys, lungs, bones, muscles;  failed braf and e7080)

        Loading spinner
        Jan in OC
        Participant

        Stephanie, I'm sorry to hear about your Mom's battle.  The waiting and limbo have always been hard for us to handle.  It just makes me nuts!  I don't have any answers on adoptive cell.  You might want to search for it on here.  I am sure someone on here can help with that.

        Just to update, I have posted more recently.  While trying to qualify for the E7080 trial in January, they found a lesion in my husband's brain.  That bumped us from a lot of trials, so we opted to go right into IPI. We already did the testing and waiting, so there was no more wasted time.  He has had two IPI infusions so far, however, we are still waiting on UCLA to schedule brain radiation.  They did another MRI last Wed for planning purposes.  The one lesion has grown from 3mm to 8mm in the last month and there is now another 6mm lesion in a different area of the brain.  What the hell are they waiting for????  They certainly do not seem to be in any hurry to treat him.  As with everyone, the waiting in crazy!

        There are a lot of people on here who can give you hope and support so continue to drop in and write.  This board has saved my sanity several times when I have been on the edge.

        Jan in OC, (wife to Dirk,  8/09; stage IV, mets in liver, lungs, kidney, brain; surgery; one month HD Interferon & one month self injections; eleven months BRAF,currently  IPI)

        Loading spinner
        smap
        Participant

        Hi Jan,

         

        My mother is also stage IV with many of the mets that your husband has.  She failed the BRAF with MEK (only patient out of 30 with continued growth) and has been taken off of the E7080 after 6 weeks on because of ocular swelling.  We were really upset to hear that her eye condition would disqualify her from this and many other trials.  The dr. says she will be blind if she continues these meds.  Now we are in the God-awful Limbo waiting for 28 days and trying to decide what to do next.  She is also considering ipi. but I am remembering some fo the early research I did on adoptive cell.  She has severe asthma and is also on oral steroids so I don't know if this would also disqualify her from adopt. cell.  The dr. seemed, for the first time, not to know what to do for her and she is pretty discouraged.  We're trying to stay positive since there are no brain mets, and we're thankful for that.  Has anyone else done recent research on adoptive cell?

         

        Thanks!  I'm new to this forum and have already benefitted from reading previous posts.

        Stephanie in Alabama (daughter to Jennifer 44yrs old:  stage IV mets in liver, kidneys, lungs, spleen, breasts, bones and muscles).  

        Loading spinner
      LBN
      Participant

      Hi Jan,

      I just read through all your posts with a trepidation since I am currently on the BRAF at UCLA. I assume that your husband was on the PLX trial if he had been on it for a year. I am on the GSK trial that started last Septmeber. I am still responding with no knowledge of how long it will last. I have already done IPI with no results. I actually progressed while on IPI. I wish you and your husband all the luck out there that this next trial will be more durable.

      Laurie

      Loading spinner
      LBN
      Participant

      Hi Jan,

      I just read through all your posts with a trepidation since I am currently on the BRAF at UCLA. I assume that your husband was on the PLX trial if he had been on it for a year. I am on the GSK trial that started last Septmeber. I am still responding with no knowledge of how long it will last. I have already done IPI with no results. I actually progressed while on IPI. I wish you and your husband all the luck out there that this next trial will be more durable.

      Laurie

      Loading spinner
Viewing 17 reply threads
  • You must be logged in to reply to this topic.
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.