Update and Concerns

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  • Post
    • July 18, 2011 at 7:57 pm
    DeniseK
    Participant

      Hey Everybody,

      Hey Everybody,

      I had my PET Scan and Brain MRI last week.  They both came back clear!!  Whew!!  I was referred to the Northern California Melanoma Center in San Francisco and I'm going this Wednesday to determine what kind of treatments I should do.  Since I'm stage IIC it's usually Interferon which I read works well on ulcerated tumors and decreases the risk of recurrence.  I still haven't seen an oncologist!  This is pissing me off because you would think my surgeon who's a general surgeon, Not oncology surgeon, should have referred me to an oncologist immediately following my surgery!!  Well I found out from Dr. Weber in San Fran that I'm missing the LDH and CBC blood tests!  It's basically too late for me to get these before Wednesday so he said he'd be sure to order them for me.  This is why I should have seen an oncologist!!  DUH!!  It's been 6 weeks since my surgery and I haven't had any blood work done!!  I was wondering what tests should have been done!  Anyway I feel so much better getting into San Fran to see specialists!  My surgeon is referring me to see an oncologist after Wednesday too.  I'll update on Wednesday or Thursday what they said!! 

      Denise 🙂

    Viewing 9 reply threads
    • Replies
        • July 18, 2011 at 8:29 pm
        lhaley
        Participant

          Denise,

          Great news!  I go to an oncologist every 3 months and they don't do blood work, I'm stage IV NED. Usually the bloodwork is done to see functions of the major organs and is for advanced disease. My local onc does it but that's because she does it for all of her patients so it's just part of the visit.

          Your onc might be looking for the bloodwork as a baseline if you are going to be doing treatments. Your surgeon would not order that.

          Good luck with your appointments!

          Linda

          Stage IV since 06   NED 6 weeks!

          • July 18, 2011 at 8:29 pm
          lhaley
          Participant

            Denise,

            Great news!  I go to an oncologist every 3 months and they don't do blood work, I'm stage IV NED. Usually the bloodwork is done to see functions of the major organs and is for advanced disease. My local onc does it but that's because she does it for all of her patients so it's just part of the visit.

            Your onc might be looking for the bloodwork as a baseline if you are going to be doing treatments. Your surgeon would not order that.

            Good luck with your appointments!

            Linda

            Stage IV since 06   NED 6 weeks!

              • July 18, 2011 at 8:48 pm
              DeniseK
              Participant

                Hi Linda! 

                Yeah I just talked to my surgeon and he said it's not a necessary test, but Dr. Weber in San Fran wants it because of the depth of my primary.  It's a good test to have to detect whether there are any stray cancer cells, whereas the PET scan doesn't pick up smaller tumors.  I didn't know my surgeon wasn't anything other than just that…My Surgeon!  I'm finding out more and more everyday.  I'll be seeing an oncologist locally after Wednesday in San Fran.  I'm just to the point where I want my life back!!  Bring on the treatments so I can put this behind me and move on with being watched.  It's amazing how this consumes your daily life!  I can't plan anything because of doctor appts, up an coming maybe's, treatment, etc….I know this is a life long disease to watch carefully but I couldn't imagine having stage IV.  My heart goes out to you all!! 

                Denise

                • July 18, 2011 at 8:48 pm
                DeniseK
                Participant

                  Hi Linda! 

                  Yeah I just talked to my surgeon and he said it's not a necessary test, but Dr. Weber in San Fran wants it because of the depth of my primary.  It's a good test to have to detect whether there are any stray cancer cells, whereas the PET scan doesn't pick up smaller tumors.  I didn't know my surgeon wasn't anything other than just that…My Surgeon!  I'm finding out more and more everyday.  I'll be seeing an oncologist locally after Wednesday in San Fran.  I'm just to the point where I want my life back!!  Bring on the treatments so I can put this behind me and move on with being watched.  It's amazing how this consumes your daily life!  I can't plan anything because of doctor appts, up an coming maybe's, treatment, etc….I know this is a life long disease to watch carefully but I couldn't imagine having stage IV.  My heart goes out to you all!! 

                  Denise

                • July 18, 2011 at 8:45 pm
                Janner
                Participant

                  Bloodwork isn't a given.  Some docs do it, others don't.  LDH is a general marker and isn't specific for melanoma.  It looks at liver function, but even people with liver mets can have a normal LDH.  Most doctors use it as a baseline and just monitor if things change.  But by itself, it doesn't really tell you much.  Certain medications can also affect the numbers.  Yes, it is good to see an oncologist, but I wouldn't stress too much about the blood work at this point.  It's much less specific than a PET/CT.

                  Best wishes,

                  Janner

                  • July 18, 2011 at 8:45 pm
                  Janner
                  Participant

                    Bloodwork isn't a given.  Some docs do it, others don't.  LDH is a general marker and isn't specific for melanoma.  It looks at liver function, but even people with liver mets can have a normal LDH.  Most doctors use it as a baseline and just monitor if things change.  But by itself, it doesn't really tell you much.  Certain medications can also affect the numbers.  Yes, it is good to see an oncologist, but I wouldn't stress too much about the blood work at this point.  It's much less specific than a PET/CT.

                    Best wishes,

                    Janner

                    • July 18, 2011 at 9:54 pm
                    MichaelFL
                    Participant

                      Jan is right on about the blood work and the LDH test. I have discussed both in posts in the past as well.

                      I would not put too much into either one right now.

                      I think I also mentioned the 56 day window for interferon to you as well in your 6/28/11 post. Keep in mind, if you are to begin interferon, it should be started within 56 days of the node dissection.  That doesn't mean Interferon won't be effective for you if you choose to do it after that time, It's just that it's limited efficacy is only been proven to be helpful if started within the 56 day window. 

                       This is the best time to take it in hopes of the best response though.

                      Glad your PET/MRI are clear and you are on th road to a decision.

                      Good luck,

                      Michael

                      • July 18, 2011 at 9:54 pm
                      MichaelFL
                      Participant

                        Jan is right on about the blood work and the LDH test. I have discussed both in posts in the past as well.

                        I would not put too much into either one right now.

                        I think I also mentioned the 56 day window for interferon to you as well in your 6/28/11 post. Keep in mind, if you are to begin interferon, it should be started within 56 days of the node dissection.  That doesn't mean Interferon won't be effective for you if you choose to do it after that time, It's just that it's limited efficacy is only been proven to be helpful if started within the 56 day window. 

                         This is the best time to take it in hopes of the best response though.

                        Glad your PET/MRI are clear and you are on th road to a decision.

                        Good luck,

                        Michael

                          • July 18, 2011 at 10:51 pm
                          Lisa13
                          Participant

                            Denise,

                            I'm so happy to hear your scans came back clear – great news!

                            Regarding blood tests – I have lung mets and my LDH is normal, so it doesn't always indicate cancer cells. The higher the LDH normally means the higher tumour burden you have and if your scans are clear, you would likely have a normal LDH.  Blood tests won't be able to detect microscopic cancer cells in your body.  Since your tumour was deep, the melanoma cells are likely to have passed into your blood stream or lymph system, but it doesn't mean they're going to start growing tumours anytime soon.  We'll never know this, which is why scans and close monitoring are so important.

                            I wish you the best of luck. Hopefully you'll get the rest of the tests you need so that you don't have to wonder.

                            Lisa

                            • July 18, 2011 at 10:51 pm
                            Lisa13
                            Participant

                              Denise,

                              I'm so happy to hear your scans came back clear – great news!

                              Regarding blood tests – I have lung mets and my LDH is normal, so it doesn't always indicate cancer cells. The higher the LDH normally means the higher tumour burden you have and if your scans are clear, you would likely have a normal LDH.  Blood tests won't be able to detect microscopic cancer cells in your body.  Since your tumour was deep, the melanoma cells are likely to have passed into your blood stream or lymph system, but it doesn't mean they're going to start growing tumours anytime soon.  We'll never know this, which is why scans and close monitoring are so important.

                              I wish you the best of luck. Hopefully you'll get the rest of the tests you need so that you don't have to wonder.

                              Lisa

                            • July 19, 2011 at 1:42 am
                            washoegal
                            Participant

                              Denise

                              Good for you for getting into SF so quickly,  I was given the choice of UCSF or John Wayne in Santa Monica and since UCSF had 3 month wait I went south.  Make sure and take ALL your records with you just in case they didn't get them at the clinic.  Also, check with your clinic to see if this clinic is a preferred provider.  Here in Nevada we have our choice of going to either:  San Francisco, Las Vegas (new option), Santa Monica (John Wayne or Angeles).  Since I was dx in January driving to SF was not an option so it didn't really matter where I went.  If you decide on Interferon treatments (which by the way is very controversial) you can probably arrange to have them done locally.

                               

                              Good Luck,

                              Mary

                              Stage 3

                                • July 20, 2011 at 4:47 am
                                DeniseK
                                Participant

                                  Hi Mary,

                                  Yeah I was very lucky to get into San Francisco.  It's actually the Northern California Melanoma Center, not UCSF.  I don't know if there's a diference.  Anyway I'll be doing my treatments in Auburn, CA.  I'm taking a month off of work for the high dose part and hoping I'll feel better and be able to go back after the month but, I've applied for SSD and SSI just in case.  The Interferon is controversial but…….It has been proven to be more effective on ulcerated tumors and since I'm stage 2C there really aren't many options.  This is to stop the recurrence or chance of recurrence so I'm pretty confident this is what I want.  I don't want to do any trials until I'm left without options.  I've done alot of research but it will be interesting to see what they say or recommend tomorrow. 

                                   

                                  Thanks Denise

                                  • July 20, 2011 at 4:47 am
                                  DeniseK
                                  Participant

                                    Hi Mary,

                                    Yeah I was very lucky to get into San Francisco.  It's actually the Northern California Melanoma Center, not UCSF.  I don't know if there's a diference.  Anyway I'll be doing my treatments in Auburn, CA.  I'm taking a month off of work for the high dose part and hoping I'll feel better and be able to go back after the month but, I've applied for SSD and SSI just in case.  The Interferon is controversial but…….It has been proven to be more effective on ulcerated tumors and since I'm stage 2C there really aren't many options.  This is to stop the recurrence or chance of recurrence so I'm pretty confident this is what I want.  I don't want to do any trials until I'm left without options.  I've done alot of research but it will be interesting to see what they say or recommend tomorrow. 

                                     

                                    Thanks Denise

                                  • July 19, 2011 at 1:42 am
                                  washoegal
                                  Participant

                                    Denise

                                    Good for you for getting into SF so quickly,  I was given the choice of UCSF or John Wayne in Santa Monica and since UCSF had 3 month wait I went south.  Make sure and take ALL your records with you just in case they didn't get them at the clinic.  Also, check with your clinic to see if this clinic is a preferred provider.  Here in Nevada we have our choice of going to either:  San Francisco, Las Vegas (new option), Santa Monica (John Wayne or Angeles).  Since I was dx in January driving to SF was not an option so it didn't really matter where I went.  If you decide on Interferon treatments (which by the way is very controversial) you can probably arrange to have them done locally.

                                     

                                    Good Luck,

                                    Mary

                                    Stage 3

                                    • July 19, 2011 at 5:07 am
                                    FormerCaregiver
                                    Participant

                                      Denise, that's great news!! Hope you get to see an oncologist soon! I really wouldn't be
                                      too concerned about the blood tests at the moment.

                                      As I might have mentioned previously, I am not a fan of interferon so please do your
                                      research before you commit yourself to this treatment. I feel that Leukine (GM-CSF) might
                                      be a good alternative that you may wish to consider. This has been found to change the
                                      nature of melanoma in some people, making tumours more manageable with surgery.

                                      Best wishes

                                      Frank from Australia

                                        • July 20, 2011 at 5:03 am
                                        DeniseK
                                        Participant

                                          Hi Frank,

                                          How's it going down under?  🙂  Yeah I'm a little less irritated today.  I'm the most impatient person.  I just feel like if this is something that could be done it should be done.  Anything to help someone feel better about their condition ya know?  The Melanoma Center said I should have the test so it will be ordered.  I'm just concerned about being jerked around by beaurocratic insurance policies.  Anyway I'm excited about tomorrow!  I'll post an update when I'm able.

                                          Thank you for all your help and advice!!  🙂

                                          Denise

                                          • July 20, 2011 at 5:03 am
                                          DeniseK
                                          Participant

                                            Hi Frank,

                                            How's it going down under?  🙂  Yeah I'm a little less irritated today.  I'm the most impatient person.  I just feel like if this is something that could be done it should be done.  Anything to help someone feel better about their condition ya know?  The Melanoma Center said I should have the test so it will be ordered.  I'm just concerned about being jerked around by beaurocratic insurance policies.  Anyway I'm excited about tomorrow!  I'll post an update when I'm able.

                                            Thank you for all your help and advice!!  🙂

                                            Denise

                                          • July 19, 2011 at 5:07 am
                                          FormerCaregiver
                                          Participant

                                            Denise, that's great news!! Hope you get to see an oncologist soon! I really wouldn't be
                                            too concerned about the blood tests at the moment.

                                            As I might have mentioned previously, I am not a fan of interferon so please do your
                                            research before you commit yourself to this treatment. I feel that Leukine (GM-CSF) might
                                            be a good alternative that you may wish to consider. This has been found to change the
                                            nature of melanoma in some people, making tumours more manageable with surgery.

                                            Best wishes

                                            Frank from Australia

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