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Worsening during treatment?

Forums General Melanoma Community Worsening during treatment?

  • Post
    Lee Parlier
    Participant

      I received my pet scan results yesterday and they were bad. Multiple mets in neck, liver, lower abdomen, pelvis etc. The SUV was around 4.00-5.00. My prior pet scan was clear on Feb. 29. I had lymph node removal in March in the left groin with 6 showing metastasis. I started yervoy and radiation on May 26 and due for my 4th ipi treament next Thursday. 

      I did have the satellite tumors pop up and the sub q's that were purple. Most have disappeared. I see the melanoma Dr. and surgeon next week at Duke. 

      Just a few questions:

      1) Has anyone that tried the immunotherapy experienced a worsening before finishing treatment?

      2) Is the disappearance of the visible sattelite tumors a sign that the ipi is working?

      3) How long does it take to know if you are a responder to ipi? (I am currently 7 weeks)

       I know the melanoma Dr. will answer these questions next week but I know there are a bunch of melanoma fighters that have talked to some of the best Docs in the field and I would welcome any input or answers you may have been told. Thakns, Lee

    Viewing 17 reply threads
    • Replies
        slh4448
        Participant

          Lee,

          Really sorry to read your message. I am scheduled to have my first pet scan on Monday. I have stage 3 melanoma and one lymph node came positive after my SLNB on July 12th.

          I know that you are meeting with your docs at Duke next week and are inquiring with fighters here for any possible questions, suggestions or ideas. I certainly don't have much experience with all of this as I was diagnosed back on May 24th. But one thing that I have been doing just since Monday the 18th when I was notified of a positive lymph node, is that I have been emailing my surgeon, his NP and nurse with questions. The NP and nurse are getting back to me rather quickly with reponses. I have also been corresponding back and forth with any question that pops into my head with MD Anderson and they have been responding to me as well. I guess what I'm saying or suggesting is for you to try and do the same if you can just to try and get a head start of sorts on questions to ask, etc next week. Hope that maybe helps….

          Hang in there. I will be praying for you Lee!

          Stacy

           

           

           

            Lee Parlier
            Participant

              Thank you, great idea. Prayers are very much appreciated.

              Lee Parlier
              Participant

                Thank you, great idea. Prayers are very much appreciated.

                Lee Parlier
                Participant

                  Thank you, great idea. Prayers are very much appreciated.

                slh4448
                Participant

                  Lee,

                  Really sorry to read your message. I am scheduled to have my first pet scan on Monday. I have stage 3 melanoma and one lymph node came positive after my SLNB on July 12th.

                  I know that you are meeting with your docs at Duke next week and are inquiring with fighters here for any possible questions, suggestions or ideas. I certainly don't have much experience with all of this as I was diagnosed back on May 24th. But one thing that I have been doing just since Monday the 18th when I was notified of a positive lymph node, is that I have been emailing my surgeon, his NP and nurse with questions. The NP and nurse are getting back to me rather quickly with reponses. I have also been corresponding back and forth with any question that pops into my head with MD Anderson and they have been responding to me as well. I guess what I'm saying or suggesting is for you to try and do the same if you can just to try and get a head start of sorts on questions to ask, etc next week. Hope that maybe helps….

                  Hang in there. I will be praying for you Lee!

                  Stacy

                   

                   

                   

                  slh4448
                  Participant

                    Lee,

                    Really sorry to read your message. I am scheduled to have my first pet scan on Monday. I have stage 3 melanoma and one lymph node came positive after my SLNB on July 12th.

                    I know that you are meeting with your docs at Duke next week and are inquiring with fighters here for any possible questions, suggestions or ideas. I certainly don't have much experience with all of this as I was diagnosed back on May 24th. But one thing that I have been doing just since Monday the 18th when I was notified of a positive lymph node, is that I have been emailing my surgeon, his NP and nurse with questions. The NP and nurse are getting back to me rather quickly with reponses. I have also been corresponding back and forth with any question that pops into my head with MD Anderson and they have been responding to me as well. I guess what I'm saying or suggesting is for you to try and do the same if you can just to try and get a head start of sorts on questions to ask, etc next week. Hope that maybe helps….

                    Hang in there. I will be praying for you Lee!

                    Stacy

                     

                     

                     

                    MoiraM
                    Participant

                      Who is interpreting the PET scan for you? PET scans show where there is cellular activity and therefore glucose uptake. Have you been told that the 'bright spots' are definitely metastases?

                      I was not even given a scan until three weeks after my fourth (and last) treatment and that was a CT scan. It showed tumour shirnkage and that was the first indicator that I was a responder. Then, 3 months later there was more shrinkage.

                      MoiraM
                      Participant

                        Who is interpreting the PET scan for you? PET scans show where there is cellular activity and therefore glucose uptake. Have you been told that the 'bright spots' are definitely metastases?

                        I was not even given a scan until three weeks after my fourth (and last) treatment and that was a CT scan. It showed tumour shirnkage and that was the first indicator that I was a responder. Then, 3 months later there was more shrinkage.

                          Lee Parlier
                          Participant

                            That was the question that the surgeon asked me. It was a radiologist at the local hospital and yes it did state it was metastasis legions. I had the films sent to Duke for them to read before I go next week, But this radiologist did say mestastic legions. I am hoping and praying that Duke tells me different. It is one of those high-lows you go through with this disease. But it even stated metastasis in both thighs as well as both humerous bones. I will ask the melanoma Doc if she will do scans there after my treatment is complete. Knocked the wind out of my sails because I was so happy that I was handling the yervoy ok so far. 

                            Lee Parlier
                            Participant

                              That was the question that the surgeon asked me. It was a radiologist at the local hospital and yes it did state it was metastasis legions. I had the films sent to Duke for them to read before I go next week, But this radiologist did say mestastic legions. I am hoping and praying that Duke tells me different. It is one of those high-lows you go through with this disease. But it even stated metastasis in both thighs as well as both humerous bones. I will ask the melanoma Doc if she will do scans there after my treatment is complete. Knocked the wind out of my sails because I was so happy that I was handling the yervoy ok so far. 

                              Lee Parlier
                              Participant

                                That was the question that the surgeon asked me. It was a radiologist at the local hospital and yes it did state it was metastasis legions. I had the films sent to Duke for them to read before I go next week, But this radiologist did say mestastic legions. I am hoping and praying that Duke tells me different. It is one of those high-lows you go through with this disease. But it even stated metastasis in both thighs as well as both humerous bones. I will ask the melanoma Doc if she will do scans there after my treatment is complete. Knocked the wind out of my sails because I was so happy that I was handling the yervoy ok so far. 

                              MoiraM
                              Participant

                                Who is interpreting the PET scan for you? PET scans show where there is cellular activity and therefore glucose uptake. Have you been told that the 'bright spots' are definitely metastases?

                                I was not even given a scan until three weeks after my fourth (and last) treatment and that was a CT scan. It showed tumour shirnkage and that was the first indicator that I was a responder. Then, 3 months later there was more shrinkage.

                                jade1111
                                Participant

                                  So sorry you are dealng with this Lee. Are you Braf gene positive? Will be interesting if they reommend the dual infusion for you verus jusy Yervoy. Hope you get some more information.  Please post what the Drs say to these questions. They are very good inquiries!

                                   

                                  Wishin you all the best!

                                  jade1111
                                  Participant

                                    So sorry you are dealng with this Lee. Are you Braf gene positive? Will be interesting if they reommend the dual infusion for you verus jusy Yervoy. Hope you get some more information.  Please post what the Drs say to these questions. They are very good inquiries!

                                     

                                    Wishin you all the best!

                                    jade1111
                                    Participant

                                      So sorry you are dealng with this Lee. Are you Braf gene positive? Will be interesting if they reommend the dual infusion for you verus jusy Yervoy. Hope you get some more information.  Please post what the Drs say to these questions. They are very good inquiries!

                                       

                                      Wishin you all the best!

                                        Lee Parlier
                                        Participant

                                          I will post everything melanoma doc says. I don't know about the bref pos right now. Jus sucks.

                                          Lee Parlier
                                          Participant

                                            I will post everything melanoma doc says. I don't know about the bref pos right now. Jus sucks.

                                            Lee Parlier
                                            Participant

                                              I will post everything melanoma doc says. I don't know about the bref pos right now. Jus sucks.

                                            JoshF
                                            Participant

                                              Lee-

                                              What can anyone say but this sucks. This is the part of the forum that makes me want to stay away but we all need to support each other. Many of us know the feelings you're going through. I live it now on a daily basis but as many here who have lifted me up Ed, Celeste, Mat, Maureen, Brian and so many more will tell you; there are options. Hang in there man….

                                              Josh

                                              JoshF
                                              Participant

                                                Lee-

                                                What can anyone say but this sucks. This is the part of the forum that makes me want to stay away but we all need to support each other. Many of us know the feelings you're going through. I live it now on a daily basis but as many here who have lifted me up Ed, Celeste, Mat, Maureen, Brian and so many more will tell you; there are options. Hang in there man….

                                                Josh

                                                  Lee Parlier
                                                  Participant

                                                    I will post everything doc says next week. the timing of the is questionable as stacy brought up so i hope to get better news this week.

                                                    Lee Parlier
                                                    Participant

                                                      I will post everything doc says next week. the timing of the is questionable as stacy brought up so i hope to get better news this week.

                                                      Lee Parlier
                                                      Participant

                                                        I will post everything doc says next week. the timing of the is questionable as stacy brought up so i hope to get better news this week.

                                                      JoshF
                                                      Participant

                                                        Lee-

                                                        What can anyone say but this sucks. This is the part of the forum that makes me want to stay away but we all need to support each other. Many of us know the feelings you're going through. I live it now on a daily basis but as many here who have lifted me up Ed, Celeste, Mat, Maureen, Brian and so many more will tell you; there are options. Hang in there man….

                                                        Josh

                                                        Polymath
                                                        Participant

                                                          Hi Lee,

                                                          I was waiting for others to mention, but it did not come up here.  First, inflammation of the tumors, caused by the initial immune response is quite common.  Yes, tumors are known to get larger first, then recede and this is often confused with progression.  Also, as Moria noted, PET scans are not as reliable as CT in identifying tumors.  PET measures metabolic activity, and is famous for giving false readings on tumors that turn out to not be present under CT scan.  You asked about response timing and I'm pretty sure this falls under the everyone is different category but since you are not getting serious side-effects you should go for that 4th dose.  And while I hate to say it, you simply may be a non-responder to ipi.  I wasn't, and with only about a 20% response rate, believe me, you would not be alone.  But that is far from the end of line for treatments and we just have to keep trying until something works.  The goal for non-responders is to stay relatively stable while the next big thing gets developed and FDA approved.  The good news is you are consulting with melanoma specialists who will offer good potential strategies.  On a final note, after failing everything, I am getting a partial response to the ipi/nivo/radiation "triple-play" and there seems to be mounting evidence to the synergy in this combo treatment for tough cases.

                                                          Gary

                                                          Polymath
                                                          Participant

                                                            Hi Lee,

                                                            I was waiting for others to mention, but it did not come up here.  First, inflammation of the tumors, caused by the initial immune response is quite common.  Yes, tumors are known to get larger first, then recede and this is often confused with progression.  Also, as Moria noted, PET scans are not as reliable as CT in identifying tumors.  PET measures metabolic activity, and is famous for giving false readings on tumors that turn out to not be present under CT scan.  You asked about response timing and I'm pretty sure this falls under the everyone is different category but since you are not getting serious side-effects you should go for that 4th dose.  And while I hate to say it, you simply may be a non-responder to ipi.  I wasn't, and with only about a 20% response rate, believe me, you would not be alone.  But that is far from the end of line for treatments and we just have to keep trying until something works.  The goal for non-responders is to stay relatively stable while the next big thing gets developed and FDA approved.  The good news is you are consulting with melanoma specialists who will offer good potential strategies.  On a final note, after failing everything, I am getting a partial response to the ipi/nivo/radiation "triple-play" and there seems to be mounting evidence to the synergy in this combo treatment for tough cases.

                                                            Gary

                                                            Polymath
                                                            Participant

                                                              Hi Lee,

                                                              I was waiting for others to mention, but it did not come up here.  First, inflammation of the tumors, caused by the initial immune response is quite common.  Yes, tumors are known to get larger first, then recede and this is often confused with progression.  Also, as Moria noted, PET scans are not as reliable as CT in identifying tumors.  PET measures metabolic activity, and is famous for giving false readings on tumors that turn out to not be present under CT scan.  You asked about response timing and I'm pretty sure this falls under the everyone is different category but since you are not getting serious side-effects you should go for that 4th dose.  And while I hate to say it, you simply may be a non-responder to ipi.  I wasn't, and with only about a 20% response rate, believe me, you would not be alone.  But that is far from the end of line for treatments and we just have to keep trying until something works.  The goal for non-responders is to stay relatively stable while the next big thing gets developed and FDA approved.  The good news is you are consulting with melanoma specialists who will offer good potential strategies.  On a final note, after failing everything, I am getting a partial response to the ipi/nivo/radiation "triple-play" and there seems to be mounting evidence to the synergy in this combo treatment for tough cases.

                                                              Gary

                                                                Lee Parlier
                                                                Participant

                                                                  Thanks, very helpful response. Guess I will know more this week. I appreciate it

                                                                  Lee Parlier
                                                                  Participant

                                                                    Thanks, very helpful response. Guess I will know more this week. I appreciate it

                                                                    BrianP
                                                                    Participant

                                                                      Lee,

                                                                      So sorry you are having to deal with this awful disease.  My first thought when I read your post was the same thought Gary had.  I've heard stories of people visually seeing tumors grow significantly following the start of treatment to see them literally melt away later.  I'll pray that's what is happening with you.  Let me ask how are you feeling?  Sometimes that can be a good indication as well.  If you weren't feeling poorly to start with that may not be much help.  I remember a story told by Dr. Wolchok in which he was giving his patient bad news that his tumors were continuing to grow and the patient basically told him I feel too good for that to be true.  Turned out he was right.

                                                                      Am I right to assume that you were receiving Ipi in the adjuvant setting and the doctor ordered the PET because of the new sub Q?  As far as your question on Ipi response time it can take anywhere from weeks to months.  Here's a copy and paste from a medical study abstract:

                                                                      "The atypical response patterns produced by ipilimumab likely reflect its mechanism of action, which requires time for the immune system to mount an effective antitumor response. Meanwhile, lesions may appear to enlarge as a consequence of enhanced T-cell infiltration, although this may not necessarily be true disease progression. Patients receiving ipilimumab may respond very differently compared to how they might react to chemotherapy. Responses can take weeks or months to develop; therefore, clinicians should not terminate treatment prematurely, providing the patient's condition allows for continuation."

                                                                       

                                                                      Are you seeing Dr. Salama at Duke?  I met with her on a few occasions and found her very knowledgable.  I wish you the best on your upcoming appointments.  As Josh mentioned, I know this is extremely scary right now but remember there are lots of not only options but good options available.  Stay as positive as you can and stay engaged here.  We are here for you.

                                                                      Brian

                                                                       

                                                                      BrianP
                                                                      Participant

                                                                        Lee,

                                                                        So sorry you are having to deal with this awful disease.  My first thought when I read your post was the same thought Gary had.  I've heard stories of people visually seeing tumors grow significantly following the start of treatment to see them literally melt away later.  I'll pray that's what is happening with you.  Let me ask how are you feeling?  Sometimes that can be a good indication as well.  If you weren't feeling poorly to start with that may not be much help.  I remember a story told by Dr. Wolchok in which he was giving his patient bad news that his tumors were continuing to grow and the patient basically told him I feel too good for that to be true.  Turned out he was right.

                                                                        Am I right to assume that you were receiving Ipi in the adjuvant setting and the doctor ordered the PET because of the new sub Q?  As far as your question on Ipi response time it can take anywhere from weeks to months.  Here's a copy and paste from a medical study abstract:

                                                                        "The atypical response patterns produced by ipilimumab likely reflect its mechanism of action, which requires time for the immune system to mount an effective antitumor response. Meanwhile, lesions may appear to enlarge as a consequence of enhanced T-cell infiltration, although this may not necessarily be true disease progression. Patients receiving ipilimumab may respond very differently compared to how they might react to chemotherapy. Responses can take weeks or months to develop; therefore, clinicians should not terminate treatment prematurely, providing the patient's condition allows for continuation."

                                                                         

                                                                        Are you seeing Dr. Salama at Duke?  I met with her on a few occasions and found her very knowledgable.  I wish you the best on your upcoming appointments.  As Josh mentioned, I know this is extremely scary right now but remember there are lots of not only options but good options available.  Stay as positive as you can and stay engaged here.  We are here for you.

                                                                        Brian

                                                                         

                                                                        BrianP
                                                                        Participant

                                                                          Lee,

                                                                          So sorry you are having to deal with this awful disease.  My first thought when I read your post was the same thought Gary had.  I've heard stories of people visually seeing tumors grow significantly following the start of treatment to see them literally melt away later.  I'll pray that's what is happening with you.  Let me ask how are you feeling?  Sometimes that can be a good indication as well.  If you weren't feeling poorly to start with that may not be much help.  I remember a story told by Dr. Wolchok in which he was giving his patient bad news that his tumors were continuing to grow and the patient basically told him I feel too good for that to be true.  Turned out he was right.

                                                                          Am I right to assume that you were receiving Ipi in the adjuvant setting and the doctor ordered the PET because of the new sub Q?  As far as your question on Ipi response time it can take anywhere from weeks to months.  Here's a copy and paste from a medical study abstract:

                                                                          "The atypical response patterns produced by ipilimumab likely reflect its mechanism of action, which requires time for the immune system to mount an effective antitumor response. Meanwhile, lesions may appear to enlarge as a consequence of enhanced T-cell infiltration, although this may not necessarily be true disease progression. Patients receiving ipilimumab may respond very differently compared to how they might react to chemotherapy. Responses can take weeks or months to develop; therefore, clinicians should not terminate treatment prematurely, providing the patient's condition allows for continuation."

                                                                           

                                                                          Are you seeing Dr. Salama at Duke?  I met with her on a few occasions and found her very knowledgable.  I wish you the best on your upcoming appointments.  As Josh mentioned, I know this is extremely scary right now but remember there are lots of not only options but good options available.  Stay as positive as you can and stay engaged here.  We are here for you.

                                                                          Brian

                                                                           

                                                                          Lee Parlier
                                                                          Participant

                                                                            Thanks for the reply Brian. As far as how I feel, It's crazy but I work out every morning at 5:00 am, do my typical everyday activities and have no side effects other than fatigue which may be the yervoy, That is what shocked me with the pet scan results. I feel great except for the stress. So yeah, I physically feel to good for it to be true now I am waiting to fall off the cliff. Half my house is a weight room and that is my hobby. Nothing has changed with my life style, even on yervoy. I am a school teacher so I have had the summer off while I healed from the surgeries and did radiation and yervoy. I am positive that helped me get through things better.

                                                                            Yeah, I had prolly 50 sub q's all over the trunk area. Some were the bodies reaction to yervoy and others were in transit cancer (sattelite tumors). All the sattelite tumors have dissolved. They are gone and most of the small nodules have dissolved as well. Dr. originally had pet scan ordered during my radiation treatments and had to be rescheduled to July 15 (6 weeks after radiation).

                                                                            The wierd thing about this pet scan was the multiple lesions it showed (according to the report) as well as bone metastasis in both thighs and both humorous. I was floored when I heard the report. The prior pet scan report prior to ipi showed clean. 

                                                                            Yes I see Dr. Salamis Wednesday and a surgical oncologist too. The hard copies of my pet scan are already there so maybe I will get some good news. 

                                                                            I am glad I found this site. There are so many good people struggling with this awful disease that have high hopes and get shot down and have to start again. The stress of waiting on reports can be overwhelming. The horror stories some Dr.s tell you about the treatments will give you nightmares. You finally heal up from a surgery only to be told you need another all with the hope of hearing three letters NED NOT CANCER FREE.

                                                                            I would still tell anyone fighting this disease, never let your Dr. steer you away from attempting yervoy or another immunotherapy. I may in fact not be a responder but if I am not I will not have to think, I wish I had tried it. Hang in there everyone that is fighting. I will definitely pass on anything I find out that might help someone else. 

                                                                            Lee Parlier
                                                                            Participant

                                                                              Thanks for the reply Brian. As far as how I feel, It's crazy but I work out every morning at 5:00 am, do my typical everyday activities and have no side effects other than fatigue which may be the yervoy, That is what shocked me with the pet scan results. I feel great except for the stress. So yeah, I physically feel to good for it to be true now I am waiting to fall off the cliff. Half my house is a weight room and that is my hobby. Nothing has changed with my life style, even on yervoy. I am a school teacher so I have had the summer off while I healed from the surgeries and did radiation and yervoy. I am positive that helped me get through things better.

                                                                              Yeah, I had prolly 50 sub q's all over the trunk area. Some were the bodies reaction to yervoy and others were in transit cancer (sattelite tumors). All the sattelite tumors have dissolved. They are gone and most of the small nodules have dissolved as well. Dr. originally had pet scan ordered during my radiation treatments and had to be rescheduled to July 15 (6 weeks after radiation).

                                                                              The wierd thing about this pet scan was the multiple lesions it showed (according to the report) as well as bone metastasis in both thighs and both humorous. I was floored when I heard the report. The prior pet scan report prior to ipi showed clean. 

                                                                              Yes I see Dr. Salamis Wednesday and a surgical oncologist too. The hard copies of my pet scan are already there so maybe I will get some good news. 

                                                                              I am glad I found this site. There are so many good people struggling with this awful disease that have high hopes and get shot down and have to start again. The stress of waiting on reports can be overwhelming. The horror stories some Dr.s tell you about the treatments will give you nightmares. You finally heal up from a surgery only to be told you need another all with the hope of hearing three letters NED NOT CANCER FREE.

                                                                              I would still tell anyone fighting this disease, never let your Dr. steer you away from attempting yervoy or another immunotherapy. I may in fact not be a responder but if I am not I will not have to think, I wish I had tried it. Hang in there everyone that is fighting. I will definitely pass on anything I find out that might help someone else. 

                                                                              Lee Parlier
                                                                              Participant

                                                                                Thanks for the reply Brian. As far as how I feel, It's crazy but I work out every morning at 5:00 am, do my typical everyday activities and have no side effects other than fatigue which may be the yervoy, That is what shocked me with the pet scan results. I feel great except for the stress. So yeah, I physically feel to good for it to be true now I am waiting to fall off the cliff. Half my house is a weight room and that is my hobby. Nothing has changed with my life style, even on yervoy. I am a school teacher so I have had the summer off while I healed from the surgeries and did radiation and yervoy. I am positive that helped me get through things better.

                                                                                Yeah, I had prolly 50 sub q's all over the trunk area. Some were the bodies reaction to yervoy and others were in transit cancer (sattelite tumors). All the sattelite tumors have dissolved. They are gone and most of the small nodules have dissolved as well. Dr. originally had pet scan ordered during my radiation treatments and had to be rescheduled to July 15 (6 weeks after radiation).

                                                                                The wierd thing about this pet scan was the multiple lesions it showed (according to the report) as well as bone metastasis in both thighs and both humorous. I was floored when I heard the report. The prior pet scan report prior to ipi showed clean. 

                                                                                Yes I see Dr. Salamis Wednesday and a surgical oncologist too. The hard copies of my pet scan are already there so maybe I will get some good news. 

                                                                                I am glad I found this site. There are so many good people struggling with this awful disease that have high hopes and get shot down and have to start again. The stress of waiting on reports can be overwhelming. The horror stories some Dr.s tell you about the treatments will give you nightmares. You finally heal up from a surgery only to be told you need another all with the hope of hearing three letters NED NOT CANCER FREE.

                                                                                I would still tell anyone fighting this disease, never let your Dr. steer you away from attempting yervoy or another immunotherapy. I may in fact not be a responder but if I am not I will not have to think, I wish I had tried it. Hang in there everyone that is fighting. I will definitely pass on anything I find out that might help someone else. 

                                                                                BrianP
                                                                                Participant

                                                                                  Great attitude Lee.  Not sure where you are located but regardless of what you learn from Duke you might want to get a second opinion at UNC.  They have a couple pretty smart docs over there as well.

                                                                                  Lee Parlier
                                                                                  Participant

                                                                                    Duke is only a 4 hour drive from Oak Hill WV where I live. I will keep UNC in mind. Thank you. 

                                                                                    Lee Parlier
                                                                                    Participant

                                                                                      Duke is only a 4 hour drive from Oak Hill WV where I live. I will keep UNC in mind. Thank you. 

                                                                                      Lee Parlier
                                                                                      Participant

                                                                                        Duke is only a 4 hour drive from Oak Hill WV where I live. I will keep UNC in mind. Thank you. 

                                                                                        BrianP
                                                                                        Participant

                                                                                          Great attitude Lee.  Not sure where you are located but regardless of what you learn from Duke you might want to get a second opinion at UNC.  They have a couple pretty smart docs over there as well.

                                                                                          BrianP
                                                                                          Participant

                                                                                            Great attitude Lee.  Not sure where you are located but regardless of what you learn from Duke you might want to get a second opinion at UNC.  They have a couple pretty smart docs over there as well.

                                                                                            Lee Parlier
                                                                                            Participant

                                                                                              Thanks, very helpful response. Guess I will know more this week. I appreciate it

                                                                                            Lee Parlier
                                                                                            Participant

                                                                                              Interesting article about pet scans and yervoy. 

                                                                                              http://www.auntminnie.com/index.aspx?sec=ser&sub=def&pag=dis&ItemID=54695

                                                                                               

                                                                                              Monitoring treatment response to ipilimumab using radiologic techniques is complex because tumor-regression responses are not often observed until after 3 months of treatment and because inflammatory reactions and tumor progression often precede the treatment response [25]. FDG PET scans can demonstrate mild tracer uptake in multiple lymph nodes after immune modulation therapy and short term follow up in 1-2 months can be performed to assess for change over time [25].

                                                                                              "Patients may have a transient worsening of disease, manifested either by progression of known lesions or the appearance of new lesions, before disease stabilizes or tumor regresses. Therefore caution should be taken in abandoning therapy early. In general these delayed responses are not observed in patients with rapidly progressive, symptomatic disease."     

                                                                                                ed williams
                                                                                                Participant

                                                                                                  Hi Lee, the article is a little out dated as far as the general information  since this was written in 2002. I would try to get more current information from some one other than Aunt Mimmi. Best Wishes!!!!Ed

                                                                                                  Lee Parlier
                                                                                                  Participant

                                                                                                    I saw the date but the mechanism still applies. Leaving to get answers now to Duke. I will share all when I get back.The recent articles say the same thing in general regression before progression.

                                                                                                    Lee Parlier
                                                                                                    Participant

                                                                                                      I saw the date but the mechanism still applies. Leaving to get answers now to Duke. I will share all when I get back.The recent articles say the same thing in general regression before progression.

                                                                                                      Lee Parlier
                                                                                                      Participant

                                                                                                        I saw the date but the mechanism still applies. Leaving to get answers now to Duke. I will share all when I get back.The recent articles say the same thing in general regression before progression.

                                                                                                        ed williams
                                                                                                        Participant

                                                                                                          Hi Lee, the article is a little out dated as far as the general information  since this was written in 2002. I would try to get more current information from some one other than Aunt Mimmi. Best Wishes!!!!Ed

                                                                                                          ed williams
                                                                                                          Participant

                                                                                                            Hi Lee, the article is a little out dated as far as the general information  since this was written in 2002. I would try to get more current information from some one other than Aunt Mimmi. Best Wishes!!!!Ed

                                                                                                          Lee Parlier
                                                                                                          Participant

                                                                                                            Interesting article about pet scans and yervoy. 

                                                                                                            http://www.auntminnie.com/index.aspx?sec=ser&sub=def&pag=dis&ItemID=54695

                                                                                                             

                                                                                                            Monitoring treatment response to ipilimumab using radiologic techniques is complex because tumor-regression responses are not often observed until after 3 months of treatment and because inflammatory reactions and tumor progression often precede the treatment response [25]. FDG PET scans can demonstrate mild tracer uptake in multiple lymph nodes after immune modulation therapy and short term follow up in 1-2 months can be performed to assess for change over time [25].

                                                                                                            "Patients may have a transient worsening of disease, manifested either by progression of known lesions or the appearance of new lesions, before disease stabilizes or tumor regresses. Therefore caution should be taken in abandoning therapy early. In general these delayed responses are not observed in patients with rapidly progressive, symptomatic disease."     

                                                                                                            Lee Parlier
                                                                                                            Participant

                                                                                                              Interesting article about pet scans and yervoy. 

                                                                                                              http://www.auntminnie.com/index.aspx?sec=ser&sub=def&pag=dis&ItemID=54695

                                                                                                               

                                                                                                              Monitoring treatment response to ipilimumab using radiologic techniques is complex because tumor-regression responses are not often observed until after 3 months of treatment and because inflammatory reactions and tumor progression often precede the treatment response [25]. FDG PET scans can demonstrate mild tracer uptake in multiple lymph nodes after immune modulation therapy and short term follow up in 1-2 months can be performed to assess for change over time [25].

                                                                                                              "Patients may have a transient worsening of disease, manifested either by progression of known lesions or the appearance of new lesions, before disease stabilizes or tumor regresses. Therefore caution should be taken in abandoning therapy early. In general these delayed responses are not observed in patients with rapidly progressive, symptomatic disease."     

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