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Scan question for ipi warriors

Forums General Melanoma Community Scan question for ipi warriors

  • Post
    ValinMtl
    Participant

    I have completed my 4th round of the compassionate ipi trial.  Received my scan but have as yet to meet with my doctors although spoke over the telephone to one who was concerned and would be speaking the director of the trial.

    RESULT

    Abdomen:

    Key finding of this study is the signifcant progression of a previously seen left inguinal region 1 cm lymph node in short axis diameter which is currently seen measuring 2.6 cm in short axis diameter.

    Impression:

    I have completed my 4th round of the compassionate ipi trial.  Received my scan but have as yet to meet with my doctors although spoke over the telephone to one who was concerned and would be speaking the director of the trial.

    RESULT

    Abdomen:

    Key finding of this study is the signifcant progression of a previously seen left inguinal region 1 cm lymph node in short axis diameter which is currently seen measuring 2.6 cm in short axis diameter.

    Impression:

    Follow-up patient with metastic melanoma showing disease progression according to recist criteria with more than 20% increase in size of a left inguinal region lymph node.

    Decrease in size of more than 30% of a right external ilac lymph node. Two other non-measurable lymph nodes show also decrease in size.

    No newly developed lesions.

    I'm was very happy about the 30% decrease on my problem leg but extremely concerned and surprised about the 20% increase on left.  I can actually feel the swelling. I have heard (and praying this is so) that sometimes lymph nodes react to ipi and was wondering if anybody else has had such a reaction.  Would appreciate any comments or thoughts on this.  I'm hoping they don't take me off the treatment since I have had this increase (unless, of course, it is absolutely necessary).  I'll be due for another scan in 12 weeks.

    Stressed and worried in Montreal,

    Val

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  • Replies
      killmel
      Participant

      Val,

      I am so sorry to hear your news. Frankly, I was surprised because I thought only your legs had disease.sub'q.

      Is this the first time  you have heard about your lymph nodes??? The radioligist is suggesting that you have disease in both left & right lymph. Were you are of disease in both rt & left nodes.

      I certainly understand why you would  be upset.

      Try not to worry until you get answers.

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      killmel
      Participant

      Val,

      I am so sorry to hear your news. Frankly, I was surprised because I thought only your legs had disease.sub'q.

      Is this the first time  you have heard about your lymph nodes??? The radioligist is suggesting that you have disease in both left & right lymph. Were you are of disease in both rt & left nodes.

      I certainly understand why you would  be upset.

      Try not to worry until you get answers.

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        ValinMtl
        Participant

        Hi..I was aware of small problems with my lymph nodes in my right groin area..but at that point, my biggest worries were the 100 or so tumors growing out of control on my right leg as well at the purplish mottling on my leg….ipi has definitely made a change by slowing the growths there and seems to gradually be changing the colouring.  I was happy to hear that the lymph nodes of concern were down 30% but totally taken aback about a new problem with the left groin area and lymph nodes there which had not been mentioned but now seems to have increased by 20%, this is what is concerning the doctors.

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        ValinMtl
        Participant

        Hi..I was aware of small problems with my lymph nodes in my right groin area..but at that point, my biggest worries were the 100 or so tumors growing out of control on my right leg as well at the purplish mottling on my leg….ipi has definitely made a change by slowing the growths there and seems to gradually be changing the colouring.  I was happy to hear that the lymph nodes of concern were down 30% but totally taken aback about a new problem with the left groin area and lymph nodes there which had not been mentioned but now seems to have increased by 20%, this is what is concerning the doctors.

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      Jim in Denver
      Participant

      Hi Val,

      I can understand your feelings, having been there myself not long ago.  As you may recall, I am in the Ipi + Temodar Trial.  In that trial, continuance allowed for some increase in tumor size.  Some inflammation is a common response, so my trial allows for a certain amount.  You may find different criteria are used for your trial, and you will soon find out exactly what they are.  My trial allows for AGGREGATE tumor size to increase no more than 25%.  My Oncologist personally measured all the tumors in my lungs (2 dimensional measurements), and then added them together, which showed an aggregate increase of 13%.  If your trial uses a similar methodology and similar criteria, the decreases should offset the increases, so you may not have an issue with remaining on the Compassionate Use Trial.

      We all must be mindful that come sometime in 2011, and as early as April, BMY will not be handing out "free" Ipi any longer, but will require payment by insurers and govermental providers – I don't know how that will work in Canada.  I suppose it is a "good news/bad news" situation in that Ipi (Yervoy) will be more widely available and trial criteria may become non-issues.  The idea then becomes, if your Doc believes it will be beneficial for a patient (Stage IV initially)and prescribes it, and payment can be arranged (it will be a very expensive drug at maybe $5000 per treatment or more), then the patient will receive it.  So regardless of what does or does not happen with your scans now, the process will change significantly fairly soon, perhaps in  the relevant 12 week time frame.

      Hope your feeling a bit more positive.  It is very good that you are showing some response, and remember that response times vary quite a bit, and that your response may increase going forward.  I can post more details about the timing issue if you wish, but I am in the same boat as you, have tried to learn as much as I can about how Ipi works, and encourage you to stay positive and not to jump to conclusions right now.

      Best holiday wishes to you.

      Regards,

      Jim

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      Jim in Denver
      Participant

      Hi Val,

      I can understand your feelings, having been there myself not long ago.  As you may recall, I am in the Ipi + Temodar Trial.  In that trial, continuance allowed for some increase in tumor size.  Some inflammation is a common response, so my trial allows for a certain amount.  You may find different criteria are used for your trial, and you will soon find out exactly what they are.  My trial allows for AGGREGATE tumor size to increase no more than 25%.  My Oncologist personally measured all the tumors in my lungs (2 dimensional measurements), and then added them together, which showed an aggregate increase of 13%.  If your trial uses a similar methodology and similar criteria, the decreases should offset the increases, so you may not have an issue with remaining on the Compassionate Use Trial.

      We all must be mindful that come sometime in 2011, and as early as April, BMY will not be handing out "free" Ipi any longer, but will require payment by insurers and govermental providers – I don't know how that will work in Canada.  I suppose it is a "good news/bad news" situation in that Ipi (Yervoy) will be more widely available and trial criteria may become non-issues.  The idea then becomes, if your Doc believes it will be beneficial for a patient (Stage IV initially)and prescribes it, and payment can be arranged (it will be a very expensive drug at maybe $5000 per treatment or more), then the patient will receive it.  So regardless of what does or does not happen with your scans now, the process will change significantly fairly soon, perhaps in  the relevant 12 week time frame.

      Hope your feeling a bit more positive.  It is very good that you are showing some response, and remember that response times vary quite a bit, and that your response may increase going forward.  I can post more details about the timing issue if you wish, but I am in the same boat as you, have tried to learn as much as I can about how Ipi works, and encourage you to stay positive and not to jump to conclusions right now.

      Best holiday wishes to you.

      Regards,

      Jim

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        ValinMtl
        Participant

        Thanks Jim, I'm trying to stay positive…ipihas worked wonders on the tumors on my leg and the 30% decrease in lymph nodes..the 20% increase in the left groin really freaked me out but I'm telling myself that it must be a reaction.

        I too am wondering what will happen to the clinical trial once FDA approval…will this affect the US and Canada as well…wonder whether they will stop all treatments in both US and Canada or will they wait until there is food and drug approval up in Canada too? Will Canadian medicare accept this new cost of treatment.  That is a big question…if it's not approved up here…can we get access on clinical basis or do we have to go to the US for treatment.  And the cost…wow! that's another worry…All these things can add stress too.

        Praying that you continue to have good response.   And holiday season wishes to you as well.

        Val xx

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        ValinMtl
        Participant

        Thanks Jim, I'm trying to stay positive…ipihas worked wonders on the tumors on my leg and the 30% decrease in lymph nodes..the 20% increase in the left groin really freaked me out but I'm telling myself that it must be a reaction.

        I too am wondering what will happen to the clinical trial once FDA approval…will this affect the US and Canada as well…wonder whether they will stop all treatments in both US and Canada or will they wait until there is food and drug approval up in Canada too? Will Canadian medicare accept this new cost of treatment.  That is a big question…if it's not approved up here…can we get access on clinical basis or do we have to go to the US for treatment.  And the cost…wow! that's another worry…All these things can add stress too.

        Praying that you continue to have good response.   And holiday season wishes to you as well.

        Val xx

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        LynnLuc
        Participant

        Jim I was wondering about the insurance issue when Yervoy is approved…I guess for other treatments too…I guess my question is…many trials will keep you on the drugs etc until they no longer work or until progression  even after the trial is over..I am wondering if they would charge you for the drug if you began the drug during a trial…anyone have any answers? I am asking because after my next 12 weeks of trial I will be put on MDX 1106 every 3 months for at least 2 years and my onc says that even after that 2 years if I remain NED I would probably stay on it….

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        LynnLuc
        Participant

        Jim I was wondering about the insurance issue when Yervoy is approved…I guess for other treatments too…I guess my question is…many trials will keep you on the drugs etc until they no longer work or until progression  even after the trial is over..I am wondering if they would charge you for the drug if you began the drug during a trial…anyone have any answers? I am asking because after my next 12 weeks of trial I will be put on MDX 1106 every 3 months for at least 2 years and my onc says that even after that 2 years if I remain NED I would probably stay on it….

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        Jim in Denver
        Participant

        Hi Lynn,

        You don't have to worry about MDX 1106 since it is still in Phase I trials and will probably not be approved for a couple of years.  I am so happy to hear you are responding to it – it looks like maybe the most promising tratment in early development right now.  That is no small thing.  BMY is onto something big here with sililar approaches to fighting cancer – first MDX 010, then MDX 1106, and also MDX 1105.  You can look up the same stuff I have by googling and reading if you want.  Don't take my word for it.

        I keep raising the issue about what happens when Ipi is approved, but very few seem to want to venture guesses as to how things migh change one Ipi is approved, as we all expect in early to mid 2011.   I don't have any special insight, but I think it is reasonable to draw some parallels with other chemo drugs.  Look at the case of Avastin, which was in the news again this week.  That one is a long story, and I won't try to repeat it here.  The part of that story that may offer some relevance for us melanoma patients has to do with what they will charge for it.  "Breakthrough" chemo drugs are in fact pretty rare and priced accordingly when approved.  I would like to see more discussion from people who know more that I do about what will change after MDX 010 (aka Ipi and now "Yervoy").  I can only say things will change, and there are probably both pluses and minuses to consider.  Increased availability is certainly a plus, but price may be a minus, for at least some patients.

        Again, I think you don't have to worry about cost in your trial for some time.  Not sure how things will work for the Compassionat Use patients, who are the largest number right now.  In my trial, patients or their insurer will be required to pick up the cost of the Ipi once it is approved by FDA.  So I will get maybe one more "free" shot, and then things will change, and I am trying to figure out exactly how.  So mostly I am thinking aloud to you all about what will happen. 

        Thank you for being very tolerant of how I sometimes express myself.  I don't always think enough before talking or writing, which I guess is obvious.  Sometimes I do think, though.  Best wishes to you, Lynn, and all of our fellow posters here whether they use names or not!

        Best,

        Jim

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        Jim in Denver
        Participant

        Hi Lynn,

        You don't have to worry about MDX 1106 since it is still in Phase I trials and will probably not be approved for a couple of years.  I am so happy to hear you are responding to it – it looks like maybe the most promising tratment in early development right now.  That is no small thing.  BMY is onto something big here with sililar approaches to fighting cancer – first MDX 010, then MDX 1106, and also MDX 1105.  You can look up the same stuff I have by googling and reading if you want.  Don't take my word for it.

        I keep raising the issue about what happens when Ipi is approved, but very few seem to want to venture guesses as to how things migh change one Ipi is approved, as we all expect in early to mid 2011.   I don't have any special insight, but I think it is reasonable to draw some parallels with other chemo drugs.  Look at the case of Avastin, which was in the news again this week.  That one is a long story, and I won't try to repeat it here.  The part of that story that may offer some relevance for us melanoma patients has to do with what they will charge for it.  "Breakthrough" chemo drugs are in fact pretty rare and priced accordingly when approved.  I would like to see more discussion from people who know more that I do about what will change after MDX 010 (aka Ipi and now "Yervoy").  I can only say things will change, and there are probably both pluses and minuses to consider.  Increased availability is certainly a plus, but price may be a minus, for at least some patients.

        Again, I think you don't have to worry about cost in your trial for some time.  Not sure how things will work for the Compassionat Use patients, who are the largest number right now.  In my trial, patients or their insurer will be required to pick up the cost of the Ipi once it is approved by FDA.  So I will get maybe one more "free" shot, and then things will change, and I am trying to figure out exactly how.  So mostly I am thinking aloud to you all about what will happen. 

        Thank you for being very tolerant of how I sometimes express myself.  I don't always think enough before talking or writing, which I guess is obvious.  Sometimes I do think, though.  Best wishes to you, Lynn, and all of our fellow posters here whether they use names or not!

        Best,

        Jim

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        LynnLuc
        Participant

        Thanks Jim…I know it's a promising treatment…has great results in kidney cancer too. I have looking at the MDX's and they do appear to be in my lowly opinion the best treatments out there. Less side effects and wear and tear on the body too…I am having psotive effects…the thyroid going down and my TSH went to .003  and T-4 and T 3 elevated and now on the flip side and now my TSH is High  6.240 etc etc…but with the flip now my C reactive protein is 8.27 and Cortisol is 9.1 which is the adrenal gland,,,,onc says this C reative protein thing is a good response too as it is the result of the peptide injections…oh so much science I need to brush up on…no energy these days…

        When I went in for my thyroid scans  the radiologist doc says…your thyroid conked out and we don't know why but we will find out….then when I had my CT the other day they saw all the massive lumps on my legs…in my thighs ( area of injections with peptides) they had to call Dr Weber and told him they never saw anything like it before LOL. They said something like it looked like I had a major infection or something…all those busy  T cell's at work!

        Both times Dr Weber tongue and cheek had to explain! I am scheduled for the endocrinologist…but that was from when my thyroid "conked out" but now it is working overtime…we don't think they will treat it with synthetic horemones because my thyroid will bounce down again one of these days…we are feelingvery good about my trial!

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        LynnLuc
        Participant

        Thanks Jim…I know it's a promising treatment…has great results in kidney cancer too. I have looking at the MDX's and they do appear to be in my lowly opinion the best treatments out there. Less side effects and wear and tear on the body too…I am having psotive effects…the thyroid going down and my TSH went to .003  and T-4 and T 3 elevated and now on the flip side and now my TSH is High  6.240 etc etc…but with the flip now my C reactive protein is 8.27 and Cortisol is 9.1 which is the adrenal gland,,,,onc says this C reative protein thing is a good response too as it is the result of the peptide injections…oh so much science I need to brush up on…no energy these days…

        When I went in for my thyroid scans  the radiologist doc says…your thyroid conked out and we don't know why but we will find out….then when I had my CT the other day they saw all the massive lumps on my legs…in my thighs ( area of injections with peptides) they had to call Dr Weber and told him they never saw anything like it before LOL. They said something like it looked like I had a major infection or something…all those busy  T cell's at work!

        Both times Dr Weber tongue and cheek had to explain! I am scheduled for the endocrinologist…but that was from when my thyroid "conked out" but now it is working overtime…we don't think they will treat it with synthetic horemones because my thyroid will bounce down again one of these days…we are feelingvery good about my trial!

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        LynnLuc
        Participant

        PS I can't spell or type today…brain drain- horemones with an "e" lol

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        LynnLuc
        Participant

        PS I can't spell or type today…brain drain- horemones with an "e" lol

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        Jim in Denver
        Participant

        Hi Lynn,

        We agree on the MDX drugs as being perhaps the most promising for a range of cancers.  Medarex  (MDX) was bought by Bristol Meyers Squibb a while back, and their approch to treating a number of different cancers – removing the "brakes" on the immune systems (Anit CTLA4, Anti CD1) so that our own systems will attack various cancers makes so much sense to me.  Logic does not always carry the day, however, and one huge issue is why some patients respond to these class of drugs and others don't.  Much more work to be done, but they are really on the right track it seems.

        Regarding your side effects, it sounds like you have good communication with Dr. Weber and his team at Moffit and that they are responsive.  One thought that I have is that you really have to understand the issues involved withany Phase I trial – they are always "dose escalation" studies.  That means that the researchers are trying to figure out the right dose, and depending on the study design, some patients may get too much of the drug(s) under study while other may get too little.  The thyroid issue can be serious but seems to be controllable (Jerry from Cape Cod has that one from Ipi). 

        Keep the positive attitude and best wishes for the holidays to you and yours.

        Regards,

        Jim

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        Jim in Denver
        Participant

        Hi Lynn,

        We agree on the MDX drugs as being perhaps the most promising for a range of cancers.  Medarex  (MDX) was bought by Bristol Meyers Squibb a while back, and their approch to treating a number of different cancers – removing the "brakes" on the immune systems (Anit CTLA4, Anti CD1) so that our own systems will attack various cancers makes so much sense to me.  Logic does not always carry the day, however, and one huge issue is why some patients respond to these class of drugs and others don't.  Much more work to be done, but they are really on the right track it seems.

        Regarding your side effects, it sounds like you have good communication with Dr. Weber and his team at Moffit and that they are responsive.  One thought that I have is that you really have to understand the issues involved withany Phase I trial – they are always "dose escalation" studies.  That means that the researchers are trying to figure out the right dose, and depending on the study design, some patients may get too much of the drug(s) under study while other may get too little.  The thyroid issue can be serious but seems to be controllable (Jerry from Cape Cod has that one from Ipi). 

        Keep the positive attitude and best wishes for the holidays to you and yours.

        Regards,

        Jim

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        LynnLuc
        Participant

        Yes MDX 1106 is now titled BMS-936558.In this trial 10 patients gets 1 mg per kilogram and the second 10 patients get 3 mg per kilogram and the third group gets 10 mg per kilogram…I happen to be on the lowest dose and I get 1 mg …

        I asked if I would get kicked up to a higher dose in the next 12 weeks and he said that he couldn't do that and that has to remain the same…I am a good responder it looks like….

        Yes I see Dr Weber every other week for about a half hour and he does his own physicals, his own questionaires, etc…he is on top of game!

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        LynnLuc
        Participant

        Yes MDX 1106 is now titled BMS-936558.In this trial 10 patients gets 1 mg per kilogram and the second 10 patients get 3 mg per kilogram and the third group gets 10 mg per kilogram…I happen to be on the lowest dose and I get 1 mg …

        I asked if I would get kicked up to a higher dose in the next 12 weeks and he said that he couldn't do that and that has to remain the same…I am a good responder it looks like….

        Yes I see Dr Weber every other week for about a half hour and he does his own physicals, his own questionaires, etc…he is on top of game!

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      Jerry from Cape Cod
      Participant

      Hi Val,

      It's a hard one to call, but my best answer would be that they will be cautious and take another look in 12 weeks.  It is very likely that the lymph node is reacting to something other than mel OR that your immune system is attacking it and it is swelling as a result.

      I'm going through something similar now.  I'm in week 96 had great MRI's (last 3 down to pinpoint. not measurable)

      CT was of concern as one of the "masses" in my lung has grown slightly.  To the point that I've had a surgical consult (not high on my list).  Yesterday had a PET scan that indicated that the mass that was of concern had a much lower uptake than it did 2 years ago and that the other mass had no uptake and is probably infection based.

      The team is going to review the PET again after the formal reading and we will discuss the options including surgery, radiation or wait and watch.

      NOW FOR THE GOOD NEWS.  There are NO other areas of uptake or mets that did not show up in the last round of Scans. 

      I know the worry you are going through and trust me it's not easy but try to let it go until the doctors do a full review and you're back with them for the full discussion.

      Jerry from Cape Cod

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        ValinMtl
        Participant

        Thanks Jerry for your advice.  I knew you were going to have scans in December, you got your feedback quickly that's good.  So happy that there are no other areas re. uptake or mets!!!  I'm sorry to hear about the masses on your lung.  It would be nice if the new one is infection, I believe that's what mine was when I had my last PET scan since it didn't show on the CT scan nor x-ray I had recently..when I had the PET scan I was fighting a bad cold.  My friend also had the same problem, showed up and after two Pet Scans the mass was gone (go figure).  I'm sending positive thoughts and pray that the same will happen for you Jerry.

        I will do my best to stay calm and hopefully the 12 week wait for next scan will give the lymph node on left side time to calm down!!! I can actually feel it even when I'm walking, I really think ipi is all in all working for me and so stressed that I'll be taken out on this 20% increase….but my son is taking me on a nice cruise January 9th from Fort Lauderdale (hubby doesn't travel)…maybe that will take my mind off of it – trying to not let mel completely take over my life.

        Keep us posted as to what your decision is on your lyng..you are in excellent hands at Dana Farber.  Val xx

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        ValinMtl
        Participant

        Thanks Jerry for your advice.  I knew you were going to have scans in December, you got your feedback quickly that's good.  So happy that there are no other areas re. uptake or mets!!!  I'm sorry to hear about the masses on your lung.  It would be nice if the new one is infection, I believe that's what mine was when I had my last PET scan since it didn't show on the CT scan nor x-ray I had recently..when I had the PET scan I was fighting a bad cold.  My friend also had the same problem, showed up and after two Pet Scans the mass was gone (go figure).  I'm sending positive thoughts and pray that the same will happen for you Jerry.

        I will do my best to stay calm and hopefully the 12 week wait for next scan will give the lymph node on left side time to calm down!!! I can actually feel it even when I'm walking, I really think ipi is all in all working for me and so stressed that I'll be taken out on this 20% increase….but my son is taking me on a nice cruise January 9th from Fort Lauderdale (hubby doesn't travel)…maybe that will take my mind off of it – trying to not let mel completely take over my life.

        Keep us posted as to what your decision is on your lyng..you are in excellent hands at Dana Farber.  Val xx

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      Jerry from Cape Cod
      Participant

      Hi Val,

      It's a hard one to call, but my best answer would be that they will be cautious and take another look in 12 weeks.  It is very likely that the lymph node is reacting to something other than mel OR that your immune system is attacking it and it is swelling as a result.

      I'm going through something similar now.  I'm in week 96 had great MRI's (last 3 down to pinpoint. not measurable)

      CT was of concern as one of the "masses" in my lung has grown slightly.  To the point that I've had a surgical consult (not high on my list).  Yesterday had a PET scan that indicated that the mass that was of concern had a much lower uptake than it did 2 years ago and that the other mass had no uptake and is probably infection based.

      The team is going to review the PET again after the formal reading and we will discuss the options including surgery, radiation or wait and watch.

      NOW FOR THE GOOD NEWS.  There are NO other areas of uptake or mets that did not show up in the last round of Scans. 

      I know the worry you are going through and trust me it's not easy but try to let it go until the doctors do a full review and you're back with them for the full discussion.

      Jerry from Cape Cod

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      jim Breitfeller
      Participant

      Val,

      The increase could be related to the T-cells infiltrating the tumor's microenviroment. If your oncologist takes you off the trial, I would suggest IL-2 Therapy. Take a lookat Day 84, the tumors way larger than time Zero.

      Ipilimumab with pics

      I hope this helps

      Jimmy B

      http://melanomamissionary.blogspot.com/

      Melanoma Missionary

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        ValinMtl
        Participant

        Thanks Jim…I'm hearing from the clinical nurse that they plan to do a 12-week scan from the last one…at least, she's requested one and has not heard differently from the doctor today.  I'm hoping that it is a reaction to ipi but I have definitely been taking note of what you have had to say and I know IL-2 will be my back up plan.  As well, they do have the trial here in Montreal unless it becomes full..then I'll look elsewhere.  Thanks for your support.  Val xx

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        ValinMtl
        Participant

        Thanks Jim…I'm hearing from the clinical nurse that they plan to do a 12-week scan from the last one…at least, she's requested one and has not heard differently from the doctor today.  I'm hoping that it is a reaction to ipi but I have definitely been taking note of what you have had to say and I know IL-2 will be my back up plan.  As well, they do have the trial here in Montreal unless it becomes full..then I'll look elsewhere.  Thanks for your support.  Val xx

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      jim Breitfeller
      Participant

      Val,

      The increase could be related to the T-cells infiltrating the tumor's microenviroment. If your oncologist takes you off the trial, I would suggest IL-2 Therapy. Take a lookat Day 84, the tumors way larger than time Zero.

      Ipilimumab with pics

      I hope this helps

      Jimmy B

      http://melanomamissionary.blogspot.com/

      Melanoma Missionary

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      AndyD
      Participant

      Hey Val,

      I'm in a similar spot as you…after my 4th ipi round my lung and calf mets shrunk but groin mets seem to be growing. I'm hoping to repeat the trial if allowed (I find out in the next couple of weeks). MIF did a webinar a month or so ago with Dr. Wollchok at Sloan Ketting on ipi. I made copies of the slides from the show for myself to better understand ipi trials…you might check them out
      http://goo.gl/gy79D

      They re-induced 9 patients and these slides may show that patients who partially respond, are good candidates for re-induction.
      http://goo.gl/CWiWy
      http://goo.gl/hCvxU

      I spoke to Dr. Wollchok for a few minutes on the phone and he said they didn't have enough data yet but felt someone like myself who had some tumors respond, may consider re-induction. The same may be true for yourself.

      You may of seen the seminar already but if you haven't, here is the full link
      http://www.melanomaintl.org/news/Webinarx_Ipilimumab_x_Antibodies.html

      I hope this info is useful

      Andy

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        killmel
        Participant

        Hi Andy

         

        Thanks so much for  all the slides

        I am glad to see you did get some positive results from IPI. Did you get any new tumors while of IPI??? . What were your side effects & how did you manage them. My wife is considering doing IPI.

        Wishing you luck to get another round of IPI.

        Douglas

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        AndyD
        Participant

        Hey Douglas,

        I didn't get any new tumors while on ipi. I had one tumor that was maybe the size of a quarter on my left calf and it is almost completely gone now. My left groin tumors seemed to stay stable during the treatment, but lately I am almost certain they are growing at an increasing rate and starting to cause a little pain at night.

        There are several side effects that go with ipi and the best thing you can do is stay in constant contact with your doctor in email or phone and do not be embarassed telling them anything. I hear people often get rashes and itch…I was fortunate not to get that since I've had it with IL2 to the point I ran to emerge one night at 4am in so much itch pain lol. I did get the diarrhea to the point they were close to hospitalizing (what happens is that you start to bleed and they get concerned). Fortunately prescription drugs and quick action fixed things at home.

         

        One thing that you don't hear as much about ipi is that for me and a few others, you can get really tired and lethargic and depressed. This may simply be cancer fatigue but I think much of it is ipi side effects. I'm several months out of treatment and don't feel well. I don't feel like myself and I don't feel like leaving the house. This comes and goes…I may feel well for one week and then poor for three. I think in time this will lesson, but you do pay a price for being on ipi. It's certainly not as bad as recovering from bio-chemo or IL2 but its not great either.

        I hope this info is useful and please feel free to ask me further questions at any time.

        Hey Val,

        I hope you are able to convince your doctors to re-induce. I have my meeting on the 28th and then I'm assuming I will need scans in early Jan. I'll let you know how it goes. I'm hoping to re-induce in late Jan or early Feb if all goes well. Also from talking with Dr. W, he said they sometimes surgically remove one or some tumors that don't respond if others do…I am asking my oncologist and surgical oncologist if they would consider this again (in the past they have been against it).

        hope to hear how things go for you as well. I often feel desperate as well. Shoot me a note any time.

        Andy

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        AndyD
        Participant

        Hey Douglas,

        I didn't get any new tumors while on ipi. I had one tumor that was maybe the size of a quarter on my left calf and it is almost completely gone now. My left groin tumors seemed to stay stable during the treatment, but lately I am almost certain they are growing at an increasing rate and starting to cause a little pain at night.

        There are several side effects that go with ipi and the best thing you can do is stay in constant contact with your doctor in email or phone and do not be embarassed telling them anything. I hear people often get rashes and itch…I was fortunate not to get that since I've had it with IL2 to the point I ran to emerge one night at 4am in so much itch pain lol. I did get the diarrhea to the point they were close to hospitalizing (what happens is that you start to bleed and they get concerned). Fortunately prescription drugs and quick action fixed things at home.

         

        One thing that you don't hear as much about ipi is that for me and a few others, you can get really tired and lethargic and depressed. This may simply be cancer fatigue but I think much of it is ipi side effects. I'm several months out of treatment and don't feel well. I don't feel like myself and I don't feel like leaving the house. This comes and goes…I may feel well for one week and then poor for three. I think in time this will lesson, but you do pay a price for being on ipi. It's certainly not as bad as recovering from bio-chemo or IL2 but its not great either.

        I hope this info is useful and please feel free to ask me further questions at any time.

        Hey Val,

        I hope you are able to convince your doctors to re-induce. I have my meeting on the 28th and then I'm assuming I will need scans in early Jan. I'll let you know how it goes. I'm hoping to re-induce in late Jan or early Feb if all goes well. Also from talking with Dr. W, he said they sometimes surgically remove one or some tumors that don't respond if others do…I am asking my oncologist and surgical oncologist if they would consider this again (in the past they have been against it).

        hope to hear how things go for you as well. I often feel desperate as well. Shoot me a note any time.

        Andy

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        K in LA
        Participant

        Andy,

        Thanks for taling the time to put up all this info on Ipi.  My husband is stage IV & just had his 2nd infusion yesterday.  He also went through IL2 back in 2009 & says that the fevers & chills he's experiencing now are giving him flash-backs to his IL2 time in ICU.  With Ipi he's, so far, been lucky not to experience the itchy rash or gastric problems, but fatigue is a big issue and I would say that "tired, lethargic & depressed" pretty much sums him up right now so I'm relieved to see that he's not alone in feeling that way — that's the great thing about this messageboard: being able to see if others have the same side effects, beyond the more generic "fatigue" description in the study literature.  

        And, for any of you out there, in search of some Ipi "good news" (I know it's bouyed me up in the past few weeks to read the success stories here): when we saw the oncologist this week, he said that it was a good sign that the first infusion seems to have stopped the melanoma in its tracks & my husband thinks some may be shrinking….

        Prior to this, he was on phase 2 of PLX 4032 for about 15 months (22 cycles).  That drug had got his tumor load down to one in his lung, a tiny one in an adrenal gland and a couple of sub-qs on his back, all stable; but when it stopped working it was frightening how fast the new mutation spread so I would strongly urge any of you out there on PLX to act fast if you think it's ceased to be effective.  It only took 2 months from us getting a worrying CT scan that showed possible growth in the lung and one of sub-qs plus numerous possible tumors too small to measure to being told that things were very serious & we should "make arrangements." 

        Kathryn

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        K in LA
        Participant

        Andy,

        Thanks for taling the time to put up all this info on Ipi.  My husband is stage IV & just had his 2nd infusion yesterday.  He also went through IL2 back in 2009 & says that the fevers & chills he's experiencing now are giving him flash-backs to his IL2 time in ICU.  With Ipi he's, so far, been lucky not to experience the itchy rash or gastric problems, but fatigue is a big issue and I would say that "tired, lethargic & depressed" pretty much sums him up right now so I'm relieved to see that he's not alone in feeling that way — that's the great thing about this messageboard: being able to see if others have the same side effects, beyond the more generic "fatigue" description in the study literature.  

        And, for any of you out there, in search of some Ipi "good news" (I know it's bouyed me up in the past few weeks to read the success stories here): when we saw the oncologist this week, he said that it was a good sign that the first infusion seems to have stopped the melanoma in its tracks & my husband thinks some may be shrinking….

        Prior to this, he was on phase 2 of PLX 4032 for about 15 months (22 cycles).  That drug had got his tumor load down to one in his lung, a tiny one in an adrenal gland and a couple of sub-qs on his back, all stable; but when it stopped working it was frightening how fast the new mutation spread so I would strongly urge any of you out there on PLX to act fast if you think it's ceased to be effective.  It only took 2 months from us getting a worrying CT scan that showed possible growth in the lung and one of sub-qs plus numerous possible tumors too small to measure to being told that things were very serious & we should "make arrangements." 

        Kathryn

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        killmel
        Participant

        Hi Andy

         

        Thanks so much for  all the slides

        I am glad to see you did get some positive results from IPI. Did you get any new tumors while of IPI??? . What were your side effects & how did you manage them. My wife is considering doing IPI.

        Wishing you luck to get another round of IPI.

        Douglas

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        ValinMtl
        Participant

        Thanks Andy..I'm going to look at these sites and try to put together a strong argument for continuation…after all 30% decrease on right as well as cutaneous tumors drying up and purplish mottling on leg decreasing MUST mean something is happening.  I wonder how many others are have new lymph node reactions in 'new' areas. I want to be prepared in case I get nixed although I'm hoping not…I think it will depend a lot on the next scan in 12 weeks…so far he hasn't said no to that!!!

        Would love to hear if they re-induct you to the trial. Let's hope the compassionate ipi trial is based on those who believe that partial response patients are good candidates for re-induction.  Thanks for all this information. I hate feeling so desperate all the time, about getting treatment…Val

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        Vermont_Donna
        Participant

        Hi Val,

          Big HUGS from VT for you!!! I am hoping the best for you. It seems that Ipi is working given the response with the mottling and the tumors. Not sure about the left sided lymph node but I had one that showed up HOT and it was removed and was an infectious (not melanoma) process. So its your right leg with the tumors? Mine too! My tumors are really growing…have a dozen or more new ones in the last three weeks….sub q's, nodules, smudges, they all look different, and my leg has lymphadema pretty bad but with the wound vac cant wrap (although I am taking a one week break from the wound vac to do an enzymatic debrider). Always something. BUT I wanted you to know I am thinking of you!!!!!

        Hugs, again,

        Vermont_Donna

        stage 3a

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        Vermont_Donna
        Participant

        Hi Val,

          Big HUGS from VT for you!!! I am hoping the best for you. It seems that Ipi is working given the response with the mottling and the tumors. Not sure about the left sided lymph node but I had one that showed up HOT and it was removed and was an infectious (not melanoma) process. So its your right leg with the tumors? Mine too! My tumors are really growing…have a dozen or more new ones in the last three weeks….sub q's, nodules, smudges, they all look different, and my leg has lymphadema pretty bad but with the wound vac cant wrap (although I am taking a one week break from the wound vac to do an enzymatic debrider). Always something. BUT I wanted you to know I am thinking of you!!!!!

        Hugs, again,

        Vermont_Donna

        stage 3a

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        Gene_S
        Participant

        Hello Donna,

        This may be of interest to you. The following article is from The Life Extension Foundation magazine (April 2010).

        Best wishes,Gene

        _______________________________________________________________________________

        Travel to Live     So Many Needless Cancer Deaths LEF April 2010
        An example of this need for travel is an experimental immunotherapy for advanced melanoma being run at Northwestern University in Chicago, Illinois. Immune-enhancing approaches against melanoma in the past have been disappointing. Doctors at Northwestern University, however, are using a novel approach that has produced impressive results.

        In this FDA-approved clinical trial, a topical cream (called imiquimod) is applied to the exposed tumor twice a day for a total of six weeks. At weeks two and four, the doctors expose the area to an infrared laser. The topical imiquimod cream binds with receptors on cancer cells and stimulates them to activate proteins that “broadcast” the presence of the tumor cells to the immune system. In essence, the patient’s own tumor cells become a unique anti-tumor vaccine. The laser portion of the treatment is designed to hyper-activate the imiquimod with the objective of inducing a systemic immune response against metastatic melanoma cells. Imiquimod is an FDA-approved drug and this is an FDA-approved clinical trial. To inquire about participating, call Stephanie St. Pierre, MD at 312-695-6786 or email [email protected]. This study is referenced by the ClinicalTrials.gov identifier: NCT00758797. Study details can be found on the FDA-approved clinical trials Web site: http://www.clinicaltrials.gov.

        You may not qualify to participate in this clinical study or may not want to be bothered with the bureaucratic red tape. Fortunately, this same protocol is being done in the Bahamas for melanoma, and a modified version is being studied to treat breast cancer. In order for this treatment to be administered, a tumor lesion must be present near the surface of your skin, such as a breast lump, a chest wall breast lesion, or a superficial melanoma tumor. To inquire about clinical programs being offered in the Bahamas, call the International Strategic Cancer Alliance (ISCA) at 610-628-3419 or log on to http://www.is-canceralliance.com.

        ISCA is an organization that can refer you to specialized medical centers around the world that offer potential life-saving therapies. It is regrettable that so many cancer patients choose the “convenience” of their local chemotherapy ward and deprive themselves of non-toxic and possibly curative treatments available a plane ride away.

        Loading spinner
        Gene_S
        Participant

        Hello Donna,

        This may be of interest to you. The following article is from The Life Extension Foundation magazine (April 2010).

        Best wishes,Gene

        _______________________________________________________________________________

        Travel to Live     So Many Needless Cancer Deaths LEF April 2010
        An example of this need for travel is an experimental immunotherapy for advanced melanoma being run at Northwestern University in Chicago, Illinois. Immune-enhancing approaches against melanoma in the past have been disappointing. Doctors at Northwestern University, however, are using a novel approach that has produced impressive results.

        In this FDA-approved clinical trial, a topical cream (called imiquimod) is applied to the exposed tumor twice a day for a total of six weeks. At weeks two and four, the doctors expose the area to an infrared laser. The topical imiquimod cream binds with receptors on cancer cells and stimulates them to activate proteins that “broadcast” the presence of the tumor cells to the immune system. In essence, the patient’s own tumor cells become a unique anti-tumor vaccine. The laser portion of the treatment is designed to hyper-activate the imiquimod with the objective of inducing a systemic immune response against metastatic melanoma cells. Imiquimod is an FDA-approved drug and this is an FDA-approved clinical trial. To inquire about participating, call Stephanie St. Pierre, MD at 312-695-6786 or email [email protected]. This study is referenced by the ClinicalTrials.gov identifier: NCT00758797. Study details can be found on the FDA-approved clinical trials Web site: http://www.clinicaltrials.gov.

        You may not qualify to participate in this clinical study or may not want to be bothered with the bureaucratic red tape. Fortunately, this same protocol is being done in the Bahamas for melanoma, and a modified version is being studied to treat breast cancer. In order for this treatment to be administered, a tumor lesion must be present near the surface of your skin, such as a breast lump, a chest wall breast lesion, or a superficial melanoma tumor. To inquire about clinical programs being offered in the Bahamas, call the International Strategic Cancer Alliance (ISCA) at 610-628-3419 or log on to http://www.is-canceralliance.com.

        ISCA is an organization that can refer you to specialized medical centers around the world that offer potential life-saving therapies. It is regrettable that so many cancer patients choose the “convenience” of their local chemotherapy ward and deprive themselves of non-toxic and possibly curative treatments available a plane ride away.

        Loading spinner
        ValinMtl
        Participant

        Thanks Andy..I'm going to look at these sites and try to put together a strong argument for continuation…after all 30% decrease on right as well as cutaneous tumors drying up and purplish mottling on leg decreasing MUST mean something is happening.  I wonder how many others are have new lymph node reactions in 'new' areas. I want to be prepared in case I get nixed although I'm hoping not…I think it will depend a lot on the next scan in 12 weeks…so far he hasn't said no to that!!!

        Would love to hear if they re-induct you to the trial. Let's hope the compassionate ipi trial is based on those who believe that partial response patients are good candidates for re-induction.  Thanks for all this information. I hate feeling so desperate all the time, about getting treatment…Val

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      AndyD
      Participant

      Hey Val,

      I'm in a similar spot as you…after my 4th ipi round my lung and calf mets shrunk but groin mets seem to be growing. I'm hoping to repeat the trial if allowed (I find out in the next couple of weeks). MIF did a webinar a month or so ago with Dr. Wollchok at Sloan Ketting on ipi. I made copies of the slides from the show for myself to better understand ipi trials…you might check them out
      http://goo.gl/gy79D

      They re-induced 9 patients and these slides may show that patients who partially respond, are good candidates for re-induction.
      http://goo.gl/CWiWy
      http://goo.gl/hCvxU

      I spoke to Dr. Wollchok for a few minutes on the phone and he said they didn't have enough data yet but felt someone like myself who had some tumors respond, may consider re-induction. The same may be true for yourself.

      You may of seen the seminar already but if you haven't, here is the full link
      http://www.melanomaintl.org/news/Webinarx_Ipilimumab_x_Antibodies.html

      I hope this info is useful

      Andy

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