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after Ipilimumab – and it hasn’t worked.

Forums Cutaneous Melanoma Community after Ipilimumab – and it hasn’t worked.

  • Post
    nickmac56
    Participant

    My wife is Stage 4 with tumors on lung being monitored as part of her clinical trial on Ipi.  Has had a number of subcutaneous tumors removed.  Is getting her 12 week scan next Tuesday, but we know Ipi hasn't worked, yet, because minimally she has some new ones on her back and stomach.  We suppose it's possible that there may be some effect between week 12 and week 16 scan – anyone else seen reductions during this timeframe?  Our oncologist is terrific and there is great care here in Seattle, but we are running out of options.

    My wife is Stage 4 with tumors on lung being monitored as part of her clinical trial on Ipi.  Has had a number of subcutaneous tumors removed.  Is getting her 12 week scan next Tuesday, but we know Ipi hasn't worked, yet, because minimally she has some new ones on her back and stomach.  We suppose it's possible that there may be some effect between week 12 and week 16 scan – anyone else seen reductions during this timeframe?  Our oncologist is terrific and there is great care here in Seattle, but we are running out of options.  One thing we apparently will try next week is a permanent regimen of Tamoxofin  – to shut down her hormone system because in the past there has been some weak linkage to hormones and melanoma – any one else gone this route?  Lastly, assuming Ipi failure, has anyone then gone on to IL-2?  She started off with Leukine which got her onto the clinical trial when she had a reaction to it.

    thanks for any help or suggestions,  Nick

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  • Replies
      lhaley
      Participant

      Nick,

      I've not taken ippi so I can't comment on response time, I know that for some it takes longer to respond then for others but you also have to have a plan in action. I've been on this board for a long time and have never heard any one taking tamoxifin for melanoma.  The link between hormones and melanoma have been discussed here but I thought that there hadn't been any confirmation. 

      Has your wife been tested for the B-raf mutations?  Have you looked into any of the MEK trials?  I guess the big question is her oncologist a melanoma specialist that can help guide you.  They are watching a tumor in my lung and I go in a few weeks. I think that IL2 will probably be my first choice if they decide they can't remove it surgically. I did Leukine in 06 and have had several recurrances since then.  While IL2 is a rough treatment we have had several on this board that did have a complete response. I feel that I have to try it while I'm healthy.

      Wishing for the best,

      Linda

      Stage IV since 06 

      dealing with mel since 79

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      lhaley
      Participant

      Nick,

      I've not taken ippi so I can't comment on response time, I know that for some it takes longer to respond then for others but you also have to have a plan in action. I've been on this board for a long time and have never heard any one taking tamoxifin for melanoma.  The link between hormones and melanoma have been discussed here but I thought that there hadn't been any confirmation. 

      Has your wife been tested for the B-raf mutations?  Have you looked into any of the MEK trials?  I guess the big question is her oncologist a melanoma specialist that can help guide you.  They are watching a tumor in my lung and I go in a few weeks. I think that IL2 will probably be my first choice if they decide they can't remove it surgically. I did Leukine in 06 and have had several recurrances since then.  While IL2 is a rough treatment we have had several on this board that did have a complete response. I feel that I have to try it while I'm healthy.

      Wishing for the best,

      Linda

      Stage IV since 06 

      dealing with mel since 79

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        nickmac56
        Participant
        Thanks Linda, she does not have the B-RAF mutation.

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        nickmac56
        Participant
        Thanks Linda, she does not have the B-RAF mutation.

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      Jim in Denver
      Participant

      Hi Nick,

      You cannot assume that the Ipi is having no effect because of new subcutaneous mets.  It may be true, but it may not be true, but it does reinforce the idea that it is (always) appropriate to think about a Plan B.  I have been enrolled in an Ipi+Temador trial since last August with stable disease as measured by lung mets, so I have asked these questions,   You can google up articles by Dr Jedd Wolchock or look at this hour long webinar by Melanoma International to understand more about how Ipi works:

      http://www.melanomaintl.org/news/Webinarx_Ipilimumab_x_Antibodies.html

      There can be a faIrly long delayed response in some patients, and I am not just making happy talk here.  In answer to your question, yes, you can see some effect between 12 and 16 week.  There are some misonceptions and/or partially true information out there about Ipi, so the abve webinar from one of the developers of the drug is reliable information.  Is your wife's Oncologist a Melanoma Specialist (at U Dub presumably)?  Is she on the compassionate use regimen (which is not actually a trial)? 

      The basis for considering Tamoxifen sounds debatable to me – maybe if she also had breast cancer or a history of it.  Before jumping to conclusions, it would make sense to wait for the 12 week scans.  Many consider IL2 if Ipi is not helping, but my Oncologist at MD Anderson in Houston says that Biochemotherapy has an approximately 100% higher rate of efficacy than IL2 by itself, so you might look into that option.

      Best wishes to you and your wife.

      Best,

      Jim

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      Jim in Denver
      Participant

      Hi Nick,

      You cannot assume that the Ipi is having no effect because of new subcutaneous mets.  It may be true, but it may not be true, but it does reinforce the idea that it is (always) appropriate to think about a Plan B.  I have been enrolled in an Ipi+Temador trial since last August with stable disease as measured by lung mets, so I have asked these questions,   You can google up articles by Dr Jedd Wolchock or look at this hour long webinar by Melanoma International to understand more about how Ipi works:

      http://www.melanomaintl.org/news/Webinarx_Ipilimumab_x_Antibodies.html

      There can be a faIrly long delayed response in some patients, and I am not just making happy talk here.  In answer to your question, yes, you can see some effect between 12 and 16 week.  There are some misonceptions and/or partially true information out there about Ipi, so the abve webinar from one of the developers of the drug is reliable information.  Is your wife's Oncologist a Melanoma Specialist (at U Dub presumably)?  Is she on the compassionate use regimen (which is not actually a trial)? 

      The basis for considering Tamoxifen sounds debatable to me – maybe if she also had breast cancer or a history of it.  Before jumping to conclusions, it would make sense to wait for the 12 week scans.  Many consider IL2 if Ipi is not helping, but my Oncologist at MD Anderson in Houston says that Biochemotherapy has an approximately 100% higher rate of efficacy than IL2 by itself, so you might look into that option.

      Best wishes to you and your wife.

      Best,

      Jim

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        nickmac56
        Participant
        Thanks Jim. I will look at the webinar. The scan Tuesday will let us know if it’s spread internally. Nice to hear there can be effect after week 12. She is on the clinical trial not compassionate use. She will likely be able to hit the second round of Ipi but apparently we can do the tamoxifin without issue relating to the followup. As you may know there is a great set of cancer groups in Seattle (UW, Cancer Care Alliance and Swedish) who communicate on their research and trials. We are lucky our oncologist is considered one of the best in town if not the best and does know melanoma well. He’s the one who recalled the link between hormones and melanoma documented in the 80’s. Our preference is certainly the immunotherapy route. Will post more after Tuesday on next steps based on the scan.

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        nickmac56
        Participant
        Thanks Jim. I will look at the webinar. The scan Tuesday will let us know if it’s spread internally. Nice to hear there can be effect after week 12. She is on the clinical trial not compassionate use. She will likely be able to hit the second round of Ipi but apparently we can do the tamoxifin without issue relating to the followup. As you may know there is a great set of cancer groups in Seattle (UW, Cancer Care Alliance and Swedish) who communicate on their research and trials. We are lucky our oncologist is considered one of the best in town if not the best and does know melanoma well. He’s the one who recalled the link between hormones and melanoma documented in the 80’s. Our preference is certainly the immunotherapy route. Will post more after Tuesday on next steps based on the scan.

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        LynnLuc
        Participant

        Have you checked into the clinicial trials at Fred Hutchinson with Dr. Cassian Yee-he's an awesome Melanoma immunologist.

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        LynnLuc
        Participant

        Have you checked into the clinicial trials at Fred Hutchinson with Dr. Cassian Yee-he's an awesome Melanoma immunologist.

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        nickmac56
        Participant
        Thanks for the referral, I’ll look into him more. He seems to be working on interesting angles. I’m sure our onc knows him. He’s been very open to us going anywhere or persuing any clinical trials if the Ipi fails.

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        nickmac56
        Participant
        Thanks for the referral, I’ll look into him more. He seems to be working on interesting angles. I’m sure our onc knows him. He’s been very open to us going anywhere or persuing any clinical trials if the Ipi fails.

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        nickmac56
        Participant

        the good news about his (Yee's) current clinical trial is that it is non-randomized and one can get in even if you've had prior T-cell immunotherapy (i.e., Ipi).  Now I just need to keep my wife's weight above 99 pounds….

        Jim, the webinar was helpful in outlining potential of delayed response.  I'll use that to prep my wife for our results Tuesday.

        thanks again for the information.  I'll be reviewing it all with our oncologist Tuesday.

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        nickmac56
        Participant

        the good news about his (Yee's) current clinical trial is that it is non-randomized and one can get in even if you've had prior T-cell immunotherapy (i.e., Ipi).  Now I just need to keep my wife's weight above 99 pounds….

        Jim, the webinar was helpful in outlining potential of delayed response.  I'll use that to prep my wife for our results Tuesday.

        thanks again for the information.  I'll be reviewing it all with our oncologist Tuesday.

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        nickmac56
        Participant

        Jim just to correct my error, after re-reading the consent form, it's called the "expanded access" trial which I assume is the same as "compassionate use".  

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        nickmac56
        Participant

        Jim just to correct my error, after re-reading the consent form, it's called the "expanded access" trial which I assume is the same as "compassionate use".  

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      sharmon
      Participant

      Hi my name is Brent Harmon, melanoma in both lungs, on IPI with Dr. Weber last year for 7 months.  This was a combo trial with chemo as well.  Stable up til the last month and some growth, enought to boot me off the trial.  Dr. Weber is #2 in the country with melanoma and he recomended we go to MD Anderson.  We did our research and went there to get on the MEK trial ( I am B-RAF neg.)   Trial was closed, we insisted on talking to the trial coordinator and she put us on a waiting list that opened up right after.  I have been on MEK the longest at MDA 12 months and stable to date.  I did experience a 30% reduction somewhere around the 4th month.  See what you can do to get into one of the inhibitors, MEK, B-RAF, or a combo trial.  If you have not been checked, have them test your tissue for gene status…  Hope that helps, call if I can add anymore….  God Bless……  Brent Harmn

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      sharmon
      Participant

      Hi my name is Brent Harmon, melanoma in both lungs, on IPI with Dr. Weber last year for 7 months.  This was a combo trial with chemo as well.  Stable up til the last month and some growth, enought to boot me off the trial.  Dr. Weber is #2 in the country with melanoma and he recomended we go to MD Anderson.  We did our research and went there to get on the MEK trial ( I am B-RAF neg.)   Trial was closed, we insisted on talking to the trial coordinator and she put us on a waiting list that opened up right after.  I have been on MEK the longest at MDA 12 months and stable to date.  I did experience a 30% reduction somewhere around the 4th month.  See what you can do to get into one of the inhibitors, MEK, B-RAF, or a combo trial.  If you have not been checked, have them test your tissue for gene status…  Hope that helps, call if I can add anymore….  God Bless……  Brent Harmn

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        nickmac56
        Participant
        Thanks Brent, very helpful. We know she’s B-RAF negative. I don’t know about MEK inhibitor eligibility but will ask. Nice to hear of your progress, wishing you continued good luck.

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        nickmac56
        Participant
        Thanks Brent, very helpful. We know she’s B-RAF negative. I don’t know about MEK inhibitor eligibility but will ask. Nice to hear of your progress, wishing you continued good luck.

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        LynnLuc
        Participant

        Brent! That's great news! I have Dr Weber too  and in a vaccine trial and I really trust him to make the best decisions. If he doesn't have a trial that would potentially benefit his patients he will refer them to somewhere that has one going on. He won't accept placebo trials for melanoma patients  at Moffitt. Dr Weber  really is the best…Rosenberg is supposed to be number one but I think that is subjective…people come from all over the world to Moffitt . I moved from North Dakota.=:o)

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        LynnLuc
        Participant

        Brent! That's great news! I have Dr Weber too  and in a vaccine trial and I really trust him to make the best decisions. If he doesn't have a trial that would potentially benefit his patients he will refer them to somewhere that has one going on. He won't accept placebo trials for melanoma patients  at Moffitt. Dr Weber  really is the best…Rosenberg is supposed to be number one but I think that is subjective…people come from all over the world to Moffitt . I moved from North Dakota.=:o)

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      Swanee
      Participant

      I just started the Ipi on Wednesday 1/19/11 at SCCA and doing the 3mg every 3 weeks.  I am 54 yrs old and have

      wondered myself if their is any relation to the hormone factor as I am going through menopause.  I know they won't

      prescribe anything for me for hot flashes, which are so frustrating.  I don't really have much to offer but it's comforting

      to know someone is close in this area and who may be seeing the same medical doctors as myself.  I am still

      getting familiarized with all the melanoma jargon and all the different treatment options that are available, which in my

      opinion seem to vary alot by location and medical facilities and also by what stage you are and what difficulties each

      patient is experiencing.  It is so overwhelming!  

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      Swanee
      Participant

      I just started the Ipi on Wednesday 1/19/11 at SCCA and doing the 3mg every 3 weeks.  I am 54 yrs old and have

      wondered myself if their is any relation to the hormone factor as I am going through menopause.  I know they won't

      prescribe anything for me for hot flashes, which are so frustrating.  I don't really have much to offer but it's comforting

      to know someone is close in this area and who may be seeing the same medical doctors as myself.  I am still

      getting familiarized with all the melanoma jargon and all the different treatment options that are available, which in my

      opinion seem to vary alot by location and medical facilities and also by what stage you are and what difficulties each

      patient is experiencing.  It is so overwhelming!  

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        nickmac56
        Participant

        good luck with your treatment.  My wife had mild side effects, mostly itchy all over starting week 7 and ongoing.  But none of the nasty effects of Ipi.  Our oncologist is Hank Kaplan up at Swedish.  

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        nickmac56
        Participant

        good luck with your treatment.  My wife had mild side effects, mostly itchy all over starting week 7 and ongoing.  But none of the nasty effects of Ipi.  Our oncologist is Hank Kaplan up at Swedish.  

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        Swanee
        Participant

        ……yes, I know that name well!  A dear friend survived breast cancer with Dr. Kaplan and she has referred me to him in

        the event I don't feel satisfied with my own oncologist.  I am at SCCA, after being referred there by oncologist at Evergreen

        Hospital …. so far, I feel well cared for by Dr. Kim Margolin and Dr. Byrd (surgeon).  Hopefully, I too will only experience the

        milder side effects of ipi.  I am also very interested in pursuing meditation, diet and mind, spirit, body…..I am currently

        following Budwig Diet (Flaxoil & Flaxseed).  It's nice to have contact with someone local….everyone on this website seems

        to be treated more on the east coast or other places in the midwest, that I am unfamiliar with….but I'm learning and

        becoming more familiar with.  Good luck to you and your wife and feel free to ask me about local stuff we might share.

        Here's to being melanomaless in Seattle!         Swanee

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        Swanee
        Participant

        ……yes, I know that name well!  A dear friend survived breast cancer with Dr. Kaplan and she has referred me to him in

        the event I don't feel satisfied with my own oncologist.  I am at SCCA, after being referred there by oncologist at Evergreen

        Hospital …. so far, I feel well cared for by Dr. Kim Margolin and Dr. Byrd (surgeon).  Hopefully, I too will only experience the

        milder side effects of ipi.  I am also very interested in pursuing meditation, diet and mind, spirit, body…..I am currently

        following Budwig Diet (Flaxoil & Flaxseed).  It's nice to have contact with someone local….everyone on this website seems

        to be treated more on the east coast or other places in the midwest, that I am unfamiliar with….but I'm learning and

        becoming more familiar with.  Good luck to you and your wife and feel free to ask me about local stuff we might share.

        Here's to being melanomaless in Seattle!         Swanee

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        zaccarin
        Participant

        Hi,

        My husband, who finished ipi in November, had an increase in tumor load. Now his doctor, like your wife's doctor, is recommending tamoxifen. Later, she will try and obtain ablaxane, or nab-paclitaxel, because he has a high sparc expression on his melanoma.  How did your wife's doctor explain his rationale for tamoxifen?

        Thanks for your posting.

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        Swanee
        Participant

        Hello to you.  I'm not sure if you really meant to post to me or not.  The original post being from Nicmac (whose wife has since passed)  we were discussing the relationship of hormones/melanoma and their Dr. prescribing Tamoxifen.  I have not been treated with any of the above mentioned drugs.  One year ago, I tried the ipi and only received one dose and had a immediate bout  with ulcerated colitis.  Currently, I only have  (two) subcutaneous tumors and we are doing a treatment of IL2 intralesional injections.  If this does not have any effect, the tumors will be removed surgically.  I'm sorry I am unable to offer you any helpful info with regard to this treatment option.  Take care, good luck and keep asking questions until you feel comfortable with the treatment being offered.

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        Swanee
        Participant

        Hello to you.  I'm not sure if you really meant to post to me or not.  The original post being from Nicmac (whose wife has since passed)  we were discussing the relationship of hormones/melanoma and their Dr. prescribing Tamoxifen.  I have not been treated with any of the above mentioned drugs.  One year ago, I tried the ipi and only received one dose and had a immediate bout  with ulcerated colitis.  Currently, I only have  (two) subcutaneous tumors and we are doing a treatment of IL2 intralesional injections.  If this does not have any effect, the tumors will be removed surgically.  I'm sorry I am unable to offer you any helpful info with regard to this treatment option.  Take care, good luck and keep asking questions until you feel comfortable with the treatment being offered.

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        zaccarin
        Participant

        Thank you for your posting in response to mine, which was indeed an error. I am glad that your tumors can be removed surgically and that you are doing IL2. Your situation looks very promising.

        All the best to you.

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        zaccarin
        Participant

        Thank you for your posting in response to mine, which was indeed an error. I am glad that your tumors can be removed surgically and that you are doing IL2. Your situation looks very promising.

        All the best to you.

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        zaccarin
        Participant

        Thank you for your posting in response to mine, which was indeed an error. I am glad that your tumors can be removed surgically and that you are doing IL2. Your situation looks very promising.

        All the best to you.

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        Swanee
        Participant

        Hello to you.  I'm not sure if you really meant to post to me or not.  The original post being from Nicmac (whose wife has since passed)  we were discussing the relationship of hormones/melanoma and their Dr. prescribing Tamoxifen.  I have not been treated with any of the above mentioned drugs.  One year ago, I tried the ipi and only received one dose and had a immediate bout  with ulcerated colitis.  Currently, I only have  (two) subcutaneous tumors and we are doing a treatment of IL2 intralesional injections.  If this does not have any effect, the tumors will be removed surgically.  I'm sorry I am unable to offer you any helpful info with regard to this treatment option.  Take care, good luck and keep asking questions until you feel comfortable with the treatment being offered.

        Loading spinner
        zaccarin
        Participant

        Hi,

        My husband, who finished ipi in November, had an increase in tumor load. Now his doctor, like your wife's doctor, is recommending tamoxifen. Later, she will try and obtain ablaxane, or nab-paclitaxel, because he has a high sparc expression on his melanoma.  How did your wife's doctor explain his rationale for tamoxifen?

        Thanks for your posting.

        Loading spinner
        zaccarin
        Participant

        Hi,

        My husband, who finished ipi in November, had an increase in tumor load. Now his doctor, like your wife's doctor, is recommending tamoxifen. Later, she will try and obtain ablaxane, or nab-paclitaxel, because he has a high sparc expression on his melanoma.  How did your wife's doctor explain his rationale for tamoxifen?

        Thanks for your posting.

        Loading spinner
      MDKate
      Participant

      Hi Nick,

      Would not assume ipi isn't working.  My oncologists — Anna Pavlick at NYU and Jedd Wolchok at MSK– have both told me that ipi benefits can manifest themselves months after last treatment.  I was able to get all four ipi doses at NYU before getting into Dr. Wolchok's anti-PD1 trial; rationale is that doing PD1 on heels of ipi can give a boost to ipi-induced immune response.As to hormone point you mention, I've been taking post-menopausal hormones (low dose estradiol) for many years; when I expressed concern that perhaps I should try to stop was told that melanoma is not an estrgen sensitive malignancy so there was no point in feeling even more miserable while I was dealing with this disease.

      Good luck to your wife — and you.  As you know, it's a terrible disease but one that certainly strengthens bonds with loved ones.

      K. 

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      MDKate
      Participant

      Hi Nick,

      Would not assume ipi isn't working.  My oncologists — Anna Pavlick at NYU and Jedd Wolchok at MSK– have both told me that ipi benefits can manifest themselves months after last treatment.  I was able to get all four ipi doses at NYU before getting into Dr. Wolchok's anti-PD1 trial; rationale is that doing PD1 on heels of ipi can give a boost to ipi-induced immune response.As to hormone point you mention, I've been taking post-menopausal hormones (low dose estradiol) for many years; when I expressed concern that perhaps I should try to stop was told that melanoma is not an estrgen sensitive malignancy so there was no point in feeling even more miserable while I was dealing with this disease.

      Good luck to your wife — and you.  As you know, it's a terrible disease but one that certainly strengthens bonds with loved ones.

      K. 

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      MDKate
      Participant

      Hi Nick,

      Would not assume ipi isn't working.  My oncologists — Anna Pavlick at NYU and Jedd Wolchok at MSK– have both told me that ipi benefits can manifest themselves months after last treatment.  I was able to get all four ipi doses at NYU before getting into Dr. Wolchok's anti-PD1 trial; rationale is that doing PD1 on heels of ipi can give a boost to ipi-induced immune response.As to hormone point you mention, I've been taking post-menopausal hormones (low dose estradiol) for many years; when I expressed concern that perhaps I should try to stop was told that melanoma is not an estrgen sensitive malignancy so there was no point in feeling even more miserable while I was dealing with this disease.

      Good luck to your wife — and you.  As you know, it's a terrible disease but one that certainly strengthens bonds with loved ones.

      K. 

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