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Need Advice from my fellow warriors….

Forums General Melanoma Community Need Advice from my fellow warriors….

  • Post
    djpayn
    Participant

      Hello Everyone.

       i am going to start with a short history – me:stage 3c, tumor in right ankle, melanoma in knee and groin nodes – all removed in july of 2008. did INF and radation, been NED ever since. I had a PET scan in april that showed activity in my right foot, my ONC wasnt overly worried and agreed to rescan in 3 months. Since then my PC dr. has been doing monthly blood work due to my sever vitamin D deficiency. IN june my WBC was 8.6. My july WBC is 10.8.

      Hello Everyone.

       i am going to start with a short history – me:stage 3c, tumor in right ankle, melanoma in knee and groin nodes – all removed in july of 2008. did INF and radation, been NED ever since. I had a PET scan in april that showed activity in my right foot, my ONC wasnt overly worried and agreed to rescan in 3 months. Since then my PC dr. has been doing monthly blood work due to my sever vitamin D deficiency. IN june my WBC was 8.6. My july WBC is 10.8.

      My PC is worried about mel returning as she cant find any other reason for my elevated WBC (no signs of infection, illness, etc..) She ran through a list of symptoms and the only one i have is severe night sweats, which i have told both my ONC and PC that had been increasing. My July PET got moved to sept also.

       

      I called my ONC today and am waiting for a return call because now i am much more worried. As far as my foot and ankle goes, i have not noticed anything from a visual standpoint that would indidcate a reocurrance.

      I checked back through all my records to check my WBC. At the height of my cancer (weeks before the tumor came out) my WBC was only 9.7 – when i had a severe infection months later my WBC was 11.4, and during radation my WBC was 3.6        Again, i have no symptoms that indicate infection, allergies, etc.

       

      Does anyone know enough about WBC's to be able to explain this to me a little better? I am going to request my ONC do labs soon also as well as try to get my PET sooner. But, should i ask for any other tests, like a CT or MRi instead (or in addition to)?

      My last ONC appt. went well with alot of reassurances that i was doing great and that PET's often give many false positives, etc… yet i know that before i was diasgnosed, i was healthy as a horse but had night sweats. Now that these symptoms seem to be returning, i am getting very scared again.

      Thanks for reading and for any advice you have. I am going to annoy my doc's until i get seen – im just hoping i can get a few opinions here to help ease my mind (or set me straight). thanks again.

      dawna (djpayn)

       

    Viewing 13 reply threads
    • Replies
        jim Breitfeller
        Participant

          dawna (djpayn),

          It is possible that your immune system has detected a reoccurence and has activated the T-cells. If you developed Memory T-cells during the initial bout with melanoma, the recoccurence would be met with a faster  and a more intense immune response.

          http://i384.photobucket.com/albums/oo290/jimmy_b/Firstexposuretoantigen.jpg

          or something else is causing a rise in your WBCs.

          You may want to do a PET to see if there is any hyperactivity and investigate.

          I wish you the best.

           

          Jimmy B

           

          jim Breitfeller
          Participant

            dawna (djpayn),

            It is possible that your immune system has detected a reoccurence and has activated the T-cells. If you developed Memory T-cells during the initial bout with melanoma, the recoccurence would be met with a faster  and a more intense immune response.

            http://i384.photobucket.com/albums/oo290/jimmy_b/Firstexposuretoantigen.jpg

            or something else is causing a rise in your WBCs.

            You may want to do a PET to see if there is any hyperactivity and investigate.

            I wish you the best.

             

            Jimmy B

             

              djpayn
              Participant

                Hi Jim. Thanks for your input. I can honestly say, i have no idea what you are talking about, lol… but i will begin to look up the information you suggested and mention to it to my ONC. I understood the difference in the levels in the picture you supplied, even though i dont understand what those levels mean. thanks for giving me more info to check out!!!

                djpayn
                Participant

                  Hi Jim. Thanks for your input. I can honestly say, i have no idea what you are talking about, lol… but i will begin to look up the information you suggested and mention to it to my ONC. I understood the difference in the levels in the picture you supplied, even though i dont understand what those levels mean. thanks for giving me more info to check out!!!

                jim Breitfeller
                Participant

                  dawna (djpayn),

                  It is possible that your immune system has detected a reoccurence and has activated the T-cells. If you developed Memory T-cells during the initial bout with melanoma, the recoccurence would be met with a faster  and a more intense immune response.

                  http://i384.photobucket.com/albums/oo290/jimmy_b/Firstexposuretoantigen.jpg

                  or something else is causing a rise in your WBCs.

                  You may want to do a PET to see if there is any hyperactivity and investigate.

                  I wish you the best.

                   

                  Jimmy B

                   

                  jim Breitfeller
                  Participant

                    dawna (djpayn),

                    It is possible that your immune system has detected a reoccurence and has activated the T-cells. If you developed Memory T-cells during the initial bout with melanoma, the recoccurence would be met with a faster  and a more intense immune response.

                    http://i384.photobucket.com/albums/oo290/jimmy_b/Firstexposuretoantigen.jpg

                    or something else is causing a rise in your WBCs.

                    You may want to do a PET to see if there is any hyperactivity and investigate.

                    I wish you the best.

                     

                    Jimmy B

                     

                      djpayn
                      Participant

                        I just got off the phone with a nurse who works with my ONC. I was told that according to them, my WBC is fine and "we will tell you when you are sick and need to worry, as well as what tests you need to have done. Not the other way around."

                         

                        this is not the normal nurse that works with my ONC directly, as my regular nurse is on vacation. So now i sit here speechless and in tears. I have no idea who to turn to or what to do. and i am appalled that i was spoken to that way, however, as many who go to moffitt can attest – things like this from this perticular doctor or  staff is not uncommon.

                         

                        im literally just dum-founded.

                        djpayn
                        Participant

                          I just got off the phone with a nurse who works with my ONC. I was told that according to them, my WBC is fine and "we will tell you when you are sick and need to worry, as well as what tests you need to have done. Not the other way around."

                           

                          this is not the normal nurse that works with my ONC directly, as my regular nurse is on vacation. So now i sit here speechless and in tears. I have no idea who to turn to or what to do. and i am appalled that i was spoken to that way, however, as many who go to moffitt can attest – things like this from this perticular doctor or  staff is not uncommon.

                           

                          im literally just dum-founded.

                          shellebrownies
                          Participant

                            That is utter and complete bullsh**. If this is the attitude of your doctor (and not just the opinion of that nurse), then I would find another doctor. You should be made to feel that you are a partner in your care, and that you have an active role in it. After all, this is potentially life and death we are talking about.

                            Can you not go to another facility or see another doctor?

                            Michelle, wife of Don

                            shellebrownies
                            Participant

                              That is utter and complete bullsh**. If this is the attitude of your doctor (and not just the opinion of that nurse), then I would find another doctor. You should be made to feel that you are a partner in your care, and that you have an active role in it. After all, this is potentially life and death we are talking about.

                              Can you not go to another facility or see another doctor?

                              Michelle, wife of Don

                              MariaH
                              Participant

                                I completely agree with Michelle.  Your mention of "night sweats" is what perked my ears.  In December of last year Dave started with night sweats again, to which he attributed to a new blanket I had.  Fast forward 6 months (of continued night sweats) and we are looking at a stage IV diagnosis.  We all know the statistics, and if YOU feel something is wrong, demand a scan.  Your emotional well being is at risk here too, and if your doctor feels the same way as the nurse, find another doctor. 

                                Best wishes and keep us posted,

                                Maria & Dave

                                MariaH
                                Participant

                                  I completely agree with Michelle.  Your mention of "night sweats" is what perked my ears.  In December of last year Dave started with night sweats again, to which he attributed to a new blanket I had.  Fast forward 6 months (of continued night sweats) and we are looking at a stage IV diagnosis.  We all know the statistics, and if YOU feel something is wrong, demand a scan.  Your emotional well being is at risk here too, and if your doctor feels the same way as the nurse, find another doctor. 

                                  Best wishes and keep us posted,

                                  Maria & Dave

                                  LynnLuc
                                  Participant

                                    Dawna, I had night sweats before I was diagnosed too.  My thyroid got messed up due to the trial I am on and it also causes night sweats…if I stopped the synthroid the night sweats also in a couple weeks…I am in the process of taking myself off of it. The last blood work showed my counts were normal with the medication now…so now I want it to be normal without the meds…i was told the hope was it would eventually return to normal…but I don't think it would as long as I feed it meds…

                                    LynnLuc
                                    Participant

                                      Dawna, I had night sweats before I was diagnosed too.  My thyroid got messed up due to the trial I am on and it also causes night sweats…if I stopped the synthroid the night sweats also in a couple weeks…I am in the process of taking myself off of it. The last blood work showed my counts were normal with the medication now…so now I want it to be normal without the meds…i was told the hope was it would eventually return to normal…but I don't think it would as long as I feed it meds…

                                      StevenK
                                      Participant

                                        I agree with Michelle that what that nurse said is nonsense and unacceptable. What I don't understand is why your PET scan got moved to Sept. I would push back hard and demand the scan now. Stand up for yourself. You can do it! You might also want to start looking around and see if there's another doctor you can go to who is both capable and respectful. 

                                        Best regards, Steve

                                        StevenK
                                        Participant

                                          I agree with Michelle that what that nurse said is nonsense and unacceptable. What I don't understand is why your PET scan got moved to Sept. I would push back hard and demand the scan now. Stand up for yourself. You can do it! You might also want to start looking around and see if there's another doctor you can go to who is both capable and respectful. 

                                          Best regards, Steve

                                          Vermont_Donna
                                          Participant

                                            Hi Dawna,

                                            I am glad to see you posting, have been wondering how you have been. That is horrible to be spoken to the way the nurse did, and I would make a complaint to your doctor when you do see him/her again….it doesnt mean you need to change oncs if you like that person but they need to know how their staff handles concerns from a patient.

                                            I would advocate for getting that PET moved up and also look into what Jimmy B suggested (I did have to chuckle when you wrote him back and said you had no idea what he was talking about…that is how I feel with many posts, and thats how I am learning as I then need to research and figure it out, as best I can).

                                            Hang in there, and I am so glad that you have been NED. Another reason for night sweats is perimenopause or menopause……maybe have that blood test done to see where you are at with that issue…..I know you are younger but many women go into early menopause or have years of peri menopause…..just suggesting…..

                                            Hugs,

                                            Vermont_Donna, stage 3a, NED

                                            Vermont_Donna
                                            Participant

                                              Hi Dawna,

                                              I am glad to see you posting, have been wondering how you have been. That is horrible to be spoken to the way the nurse did, and I would make a complaint to your doctor when you do see him/her again….it doesnt mean you need to change oncs if you like that person but they need to know how their staff handles concerns from a patient.

                                              I would advocate for getting that PET moved up and also look into what Jimmy B suggested (I did have to chuckle when you wrote him back and said you had no idea what he was talking about…that is how I feel with many posts, and thats how I am learning as I then need to research and figure it out, as best I can).

                                              Hang in there, and I am so glad that you have been NED. Another reason for night sweats is perimenopause or menopause……maybe have that blood test done to see where you are at with that issue…..I know you are younger but many women go into early menopause or have years of peri menopause…..just suggesting…..

                                              Hugs,

                                              Vermont_Donna, stage 3a, NED

                                            dian in spokane
                                            Participant

                                              First, I'm so sorry that this nurse talked to you this way. I would also urge you to speak to your doctor about your treatment, and how it made you feel. And put it in writing and send it to the director of patient care at your clinic, with a copy to your doctor. Be sure to put some emphasis on how DEVALUED you feel as a patient.

                                              Presumably, your doctor, like every other freeeeeeking oncologist in America says to you at some point during the visit.. 'see you in 6 months, unless you had changes' or 'call if you have any new bumps, spots, swollen node or concerns of any kind"

                                              When does your regular nurse get back? Do you have a better relationship with her? I know ~I~ could call my onc's nurse any time with concerns, and she would talk to me, and likely get me in to see my doc right away!

                                              I'd also suggest that you speak to or see your PC again, explain exactly what they said to you, and since your PC is the one who voiced this concern to you about your WBC and mentioned it could be related to a recurrence, I'd ask the PC to call the Oncologist directly. Doctors have a way of getting through to each other even when patients can't

                                              Finally, I'd like to urge you to leave the whoe night sweats thing out of your factoring. So many things can cause night sweats. I know you are far too young for menopause, but you are not too young for Peri-menopause…google it up. I know women who started getting hot flashes/and or night sweats and other menopausal symptoms clear down in their early 30s.

                                              Plus..hasn't it been like… 400degrees Farenheit down there in Florida? I mean.. what's it get down to at night, like.. 85??? I know I know.. you have AC! but it'd think it would be a natural response by the body to living in the parking lot of Hades.

                                              Finally, DJ, remember, even if this is some kind of melanoma flair up, try to remember that it's not the end of the world. You've proven to everyone what and amazing fighter you are. One way or the other, you are going to do great.

                                              dian in spokane
                                              Participant

                                                First, I'm so sorry that this nurse talked to you this way. I would also urge you to speak to your doctor about your treatment, and how it made you feel. And put it in writing and send it to the director of patient care at your clinic, with a copy to your doctor. Be sure to put some emphasis on how DEVALUED you feel as a patient.

                                                Presumably, your doctor, like every other freeeeeeking oncologist in America says to you at some point during the visit.. 'see you in 6 months, unless you had changes' or 'call if you have any new bumps, spots, swollen node or concerns of any kind"

                                                When does your regular nurse get back? Do you have a better relationship with her? I know ~I~ could call my onc's nurse any time with concerns, and she would talk to me, and likely get me in to see my doc right away!

                                                I'd also suggest that you speak to or see your PC again, explain exactly what they said to you, and since your PC is the one who voiced this concern to you about your WBC and mentioned it could be related to a recurrence, I'd ask the PC to call the Oncologist directly. Doctors have a way of getting through to each other even when patients can't

                                                Finally, I'd like to urge you to leave the whoe night sweats thing out of your factoring. So many things can cause night sweats. I know you are far too young for menopause, but you are not too young for Peri-menopause…google it up. I know women who started getting hot flashes/and or night sweats and other menopausal symptoms clear down in their early 30s.

                                                Plus..hasn't it been like… 400degrees Farenheit down there in Florida? I mean.. what's it get down to at night, like.. 85??? I know I know.. you have AC! but it'd think it would be a natural response by the body to living in the parking lot of Hades.

                                                Finally, DJ, remember, even if this is some kind of melanoma flair up, try to remember that it's not the end of the world. You've proven to everyone what and amazing fighter you are. One way or the other, you are going to do great.

                                                LynnLuc
                                                Participant

                                                  You still seeing DR K? Dang..thought you were headed up to Sands ( you could come see me :o)

                                                  I haven't had a PET since coming down here….just CT's and MRI's every 3 months…they said since there isn't a mass on the CT  or MRI…they won't use the PET…

                                                    LynnLuc
                                                    Participant

                                                      I don't think my friend Linda S has had a PET since going to Moffitt either…just all the other scans too…

                                                      LynnLuc
                                                      Participant

                                                        She has Dr K too 🙁

                                                        LynnLuc
                                                        Participant

                                                          She has Dr K too 🙁

                                                          LynnLuc
                                                          Participant

                                                            I don't think my friend Linda S has had a PET since going to Moffitt either…just all the other scans too…

                                                          LynnLuc
                                                          Participant

                                                            You still seeing DR K? Dang..thought you were headed up to Sands ( you could come see me :o)

                                                            I haven't had a PET since coming down here….just CT's and MRI's every 3 months…they said since there isn't a mass on the CT  or MRI…they won't use the PET…

                                                            Charlie S
                                                            Participant

                                                              Hey there Ms. Dawna..  I do have a sugestion for you, but you will have to give yourself a brainwash and borrrow a stupid hat………………..both of which I know is not the cut of your jib,,,,,,,but hear me out.

                                                              Sometimes a fresh look is in order; and I mean fresh.

                                                              Thinking you have insurance, try this.

                                                              Go to a doctor in a box, that is to say one of the many Urgent Care places.

                                                              Go during the daytime.

                                                              Fill out all the forms, but DOWNPLAY any cancer stuff.  This is where you have to swallow you tongue and put on your brainwash hat.  Just note casually about melanoma, but downplay it with no details as if it was something in your past and of no consequence.

                                                              Now, when you get to see a doc, just say you don't feel well,  You are not sleeping well, you have night sweats and dismiss any thoughts about cancer with the wave of your hand and a "oh, that was a long time ago" and don't dwell on it.

                                                              Simply say, you just don't feel like yourself, maybe you aren't eating right, maybe it's woman things,,,,,,,,,,,,,,,,,,,,you just don't know, but you just don't feel right and maybe it is time for a physical. and a CBC.

                                                              You MUST keep your stupid hat on, and be dismissive that it even remotely would have anything to do  with cancer,  and do so in a offhanded and dismissive manner.

                                                              You just don't feel well and describe your symptoms..  Play stupid on your medical history, don't put down doctors or hospitals, just that you had a cancer scare, but you really don't really recall the details or the hospital because it has been so long ago……………..downplay, downplay, downplay.

                                                              I don't like to advocate deception, but sometimes, when your personal health is involved, it pays to be creative.to get the best outcome.

                                                               

                                                              Charlie S

                                                               

                                                                LynnLuc
                                                                Participant

                                                                  Charlie is right …once they see cancer it's ALL they see!

                                                                  LynnLuc
                                                                  Participant

                                                                    Charlie is right …once they see cancer it's ALL they see!

                                                                    Charlie S
                                                                    Participant

                                                                      As usual, I probably missed my greater  point, it MAY be melanoma, but it may NOT be melanoma, but let a fresh set of eyes work the problem without pre conceived notions from you or them

                                                                      Charlie S

                                                                      Charlie S
                                                                      Participant

                                                                        As usual, I probably missed my greater  point, it MAY be melanoma, but it may NOT be melanoma, but let a fresh set of eyes work the problem without pre conceived notions from you or them

                                                                        Charlie S

                                                                      Charlie S
                                                                      Participant

                                                                        Hey there Ms. Dawna..  I do have a sugestion for you, but you will have to give yourself a brainwash and borrrow a stupid hat………………..both of which I know is not the cut of your jib,,,,,,,but hear me out.

                                                                        Sometimes a fresh look is in order; and I mean fresh.

                                                                        Thinking you have insurance, try this.

                                                                        Go to a doctor in a box, that is to say one of the many Urgent Care places.

                                                                        Go during the daytime.

                                                                        Fill out all the forms, but DOWNPLAY any cancer stuff.  This is where you have to swallow you tongue and put on your brainwash hat.  Just note casually about melanoma, but downplay it with no details as if it was something in your past and of no consequence.

                                                                        Now, when you get to see a doc, just say you don't feel well,  You are not sleeping well, you have night sweats and dismiss any thoughts about cancer with the wave of your hand and a "oh, that was a long time ago" and don't dwell on it.

                                                                        Simply say, you just don't feel like yourself, maybe you aren't eating right, maybe it's woman things,,,,,,,,,,,,,,,,,,,,you just don't know, but you just don't feel right and maybe it is time for a physical. and a CBC.

                                                                        You MUST keep your stupid hat on, and be dismissive that it even remotely would have anything to do  with cancer,  and do so in a offhanded and dismissive manner.

                                                                        You just don't feel well and describe your symptoms..  Play stupid on your medical history, don't put down doctors or hospitals, just that you had a cancer scare, but you really don't really recall the details or the hospital because it has been so long ago……………..downplay, downplay, downplay.

                                                                        I don't like to advocate deception, but sometimes, when your personal health is involved, it pays to be creative.to get the best outcome.

                                                                         

                                                                        Charlie S

                                                                         

                                                                        LynnLuc
                                                                        Participant

                                                                          since we use the same lab…I pulled out a random blood work sheet… mine from Feb. my wbc was 7.71 k/ul  and the normal range is 4.0- 10.90.

                                                                          LynnLuc
                                                                          Participant

                                                                            since we use the same lab…I pulled out a random blood work sheet… mine from Feb. my wbc was 7.71 k/ul  and the normal range is 4.0- 10.90.

                                                                            djpayn
                                                                            Participant

                                                                              SO MANY FANTASTIC RESPONSES!! THANK YOU!!!

                                                                              @lynn – yes.. sadly.. its still dr k i am seeing. i went to patient relations and am dealing with it though the advocate they gave me. also, this lab says any wbc above 8.4 is high –

                                                                              @vermont_donna…. i SO wish i was back up there seeing the wonderful ONC we used to share. The care up there is just so much better. But otherwise, i am doing fantastic!!

                                                                              @charlie – I LOVE your idea.. and i can and will do it!!

                                                                              @dian – yes it is HOT here, but we typically keep the a/c at 74 and run te fans on high (summer in fl=300$ electric bills) the sweats scare me only cuz i remember having them right before original diagnosis.

                                                                              i dont know who metion the peri-menopause stuff, but i have been tested already – but— with charlies idea.. i may be able to get tested again by a competely different place.

                                                                               

                                                                              i really want to thank everyone who responded.. the advice and information and ideas were fantastic. i feel better after dealing with patient relations. i did stress to my advocate that i refuse to feel like my health and life is a burden to someone – im pretty sure my doc will be quite unhappy next time i see her, but i really dont care.  i dont have the relationship with her that i had with my original ONC in NH, but i am trying.

                                                                               

                                                                              thanks again friends!! i am a fighter and a fiesty girl so i know this will get resolved soon!!

                                                                              djpayn
                                                                              Participant

                                                                                SO MANY FANTASTIC RESPONSES!! THANK YOU!!!

                                                                                @lynn – yes.. sadly.. its still dr k i am seeing. i went to patient relations and am dealing with it though the advocate they gave me. also, this lab says any wbc above 8.4 is high –

                                                                                @vermont_donna…. i SO wish i was back up there seeing the wonderful ONC we used to share. The care up there is just so much better. But otherwise, i am doing fantastic!!

                                                                                @charlie – I LOVE your idea.. and i can and will do it!!

                                                                                @dian – yes it is HOT here, but we typically keep the a/c at 74 and run te fans on high (summer in fl=300$ electric bills) the sweats scare me only cuz i remember having them right before original diagnosis.

                                                                                i dont know who metion the peri-menopause stuff, but i have been tested already – but— with charlies idea.. i may be able to get tested again by a competely different place.

                                                                                 

                                                                                i really want to thank everyone who responded.. the advice and information and ideas were fantastic. i feel better after dealing with patient relations. i did stress to my advocate that i refuse to feel like my health and life is a burden to someone – im pretty sure my doc will be quite unhappy next time i see her, but i really dont care.  i dont have the relationship with her that i had with my original ONC in NH, but i am trying.

                                                                                 

                                                                                thanks again friends!! i am a fighter and a fiesty girl so i know this will get resolved soon!!

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