The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

ockelly

Forum Replies Created

Viewing 14 reply threads
  • Replies
      ockelly
      Participant

        Allen,  

        Congrats!!!  Even after tolerating the year fairly well you'll be amazed at how good you will soon be feeling.  

        My husband finished at the end of Feb.  Two weeks without injections and he was feeling great, a month after he was himself again.  He also thought he tolerated the year well but I think he had forgotten what feeling good really felt like.  

        I will mention this… if you have been on any sleep aids or antianxiety medications, taper over a few weeks before stopping cold.  My hubby had been on Ativan 1mg (tiny dose) to counter nighttime anxiety and help him sleep.  He had some significant withdrawal symptoms from stopping abruptly.

        Enjoy your interferon free days.

        Kelly

        ockelly
        Participant

          Allen,  

          Congrats!!!  Even after tolerating the year fairly well you'll be amazed at how good you will soon be feeling.  

          My husband finished at the end of Feb.  Two weeks without injections and he was feeling great, a month after he was himself again.  He also thought he tolerated the year well but I think he had forgotten what feeling good really felt like.  

          I will mention this… if you have been on any sleep aids or antianxiety medications, taper over a few weeks before stopping cold.  My hubby had been on Ativan 1mg (tiny dose) to counter nighttime anxiety and help him sleep.  He had some significant withdrawal symptoms from stopping abruptly.

          Enjoy your interferon free days.

          Kelly

          ockelly
          Participant

            Allen,  

            Congrats!!!  Even after tolerating the year fairly well you'll be amazed at how good you will soon be feeling.  

            My husband finished at the end of Feb.  Two weeks without injections and he was feeling great, a month after he was himself again.  He also thought he tolerated the year well but I think he had forgotten what feeling good really felt like.  

            I will mention this… if you have been on any sleep aids or antianxiety medications, taper over a few weeks before stopping cold.  My hubby had been on Ativan 1mg (tiny dose) to counter nighttime anxiety and help him sleep.  He had some significant withdrawal symptoms from stopping abruptly.

            Enjoy your interferon free days.

            Kelly

            ockelly
            Participant

              What i understand it to be is…. if the node can be palpated (felt) it is macro but if not its micro (cancerous cells seen only under a microscope)

              ockelly
              Participant

                What i understand it to be is…. if the node can be palpated (felt) it is macro but if not its micro (cancerous cells seen only under a microscope)

                ockelly
                Participant

                  What i understand it to be is…. if the node can be palpated (felt) it is macro but if not its micro (cancerous cells seen only under a microscope)

                  ockelly
                  Participant

                    Hi Erin,

                    Kelly here… my husband has stage 3b mel, I am a nurse.  Here's what I know about mel in the sm intestine…. 

                    We have a close friend stage 4 mel with multiple recurrences/clinical trials, etc whose last recurrence was in his small intestine.  He had abdominal surgery and has been NED for 15 years.  When I told this story to Dr Margolin (Mel researcher at UWashington), she told us that mel in the small intestine if meticulously resected can be a cure.  I know that sounds a bit extreme but it is truly what she said.  She did stress that the surgeon must be highly skilled in the removal GI cancers.. So do your homework and find the top notch doc to do the job.  

                    Best of luck to you!!   Kelly

                    ockelly
                    Participant

                      Hi Erin,

                      Kelly here… my husband has stage 3b mel, I am a nurse.  Here's what I know about mel in the sm intestine…. 

                      We have a close friend stage 4 mel with multiple recurrences/clinical trials, etc whose last recurrence was in his small intestine.  He had abdominal surgery and has been NED for 15 years.  When I told this story to Dr Margolin (Mel researcher at UWashington), she told us that mel in the small intestine if meticulously resected can be a cure.  I know that sounds a bit extreme but it is truly what she said.  She did stress that the surgeon must be highly skilled in the removal GI cancers.. So do your homework and find the top notch doc to do the job.  

                      Best of luck to you!!   Kelly

                      ockelly
                      Participant

                        Hi Erin,

                        Kelly here… my husband has stage 3b mel, I am a nurse.  Here's what I know about mel in the sm intestine…. 

                        We have a close friend stage 4 mel with multiple recurrences/clinical trials, etc whose last recurrence was in his small intestine.  He had abdominal surgery and has been NED for 15 years.  When I told this story to Dr Margolin (Mel researcher at UWashington), she told us that mel in the small intestine if meticulously resected can be a cure.  I know that sounds a bit extreme but it is truly what she said.  She did stress that the surgeon must be highly skilled in the removal GI cancers.. So do your homework and find the top notch doc to do the job.  

                        Best of luck to you!!   Kelly

                        ockelly
                        Participant

                          How much water are you getting in per day?  Are they giving you IV fluids before each infusion?  If they're giving you 500ml ask if they'll give you a liter.  My husband TJ is 9 weeks from finishing his year.   He measures out a gallon of water a day and tries to get it in before the end of his workday. 

                          I have heard of some patients trying Ritalin during treatment.  It would help with your energy and the brain fog that many people experience as the weeks go on.  

                          Beginning week 3 means you get to start counting down the days…. half way there!!  I remember that milestone and it felt good!  Just think on Friday you'll be 75% done with the daily infusions.

                          Hang in there it will be different when the injections start. 

                          Kelly 

                          ockelly
                          Participant

                            How much water are you getting in per day?  Are they giving you IV fluids before each infusion?  If they're giving you 500ml ask if they'll give you a liter.  My husband TJ is 9 weeks from finishing his year.   He measures out a gallon of water a day and tries to get it in before the end of his workday. 

                            I have heard of some patients trying Ritalin during treatment.  It would help with your energy and the brain fog that many people experience as the weeks go on.  

                            Beginning week 3 means you get to start counting down the days…. half way there!!  I remember that milestone and it felt good!  Just think on Friday you'll be 75% done with the daily infusions.

                            Hang in there it will be different when the injections start. 

                            Kelly 

                            ockelly
                            Participant

                              How much water are you getting in per day?  Are they giving you IV fluids before each infusion?  If they're giving you 500ml ask if they'll give you a liter.  My husband TJ is 9 weeks from finishing his year.   He measures out a gallon of water a day and tries to get it in before the end of his workday. 

                              I have heard of some patients trying Ritalin during treatment.  It would help with your energy and the brain fog that many people experience as the weeks go on.  

                              Beginning week 3 means you get to start counting down the days…. half way there!!  I remember that milestone and it felt good!  Just think on Friday you'll be 75% done with the daily infusions.

                              Hang in there it will be different when the injections start. 

                              Kelly 

                              ockelly
                              Participant

                                Donna

                                My husband TJ is 9 week from completing his Interferon year.  I am an RN and I have followed his labs very closely throughout.  The low blood counts are a little misleading.  Interferon causes blood cells (particularly white blood cells) to clump together… they get sticky and so the complete blood count numbers aren't always accurate.  Yes the treatment does cause lower WBCs but probably not as low as you are seeing on paper.    We watched his neutrophils the closest.  On the lab results you'll see 'neutrophils abs' listed a few lines below neutrophils.  This is the ANC (absolute neutrophil count) and the lower it is the more susceptible your husband would be to getting an infection.  

                                Our oncologists rule of thumb was if the ANC went below .6 (sometimes referred to as 600) then we would have to lower his dose.  He got to .6 a few times but never below so he never had a dose change.  HIs ANC has stayed low all year.  Most of the time it is 1.0 but he didn't catch any bugs.  He did have one serious infection over the summer.  He had pulled a muscle in his groin.  It became swollen and he also had a low grade fever.  We didn't think much of the  fever and still gave his Interferon that night.  The next morning he had a high fever and huge cellulitis from his groin to his knee.  He ended up in the hospital on IV antibiotics for 3 days.  I mention this only to let you know that what would be a minor infection for someone else can get out of control during treatment… after all we're  boosting their immune response right.  Be sure to be in contact with your oncologist if your husband gets sick beyond side effects.  They"ll probably have you hold a dose.  We all got flu shots since TJ can't… 

                                As far as the lymphocytes go, I've never heard concerns about having a low count.  I remember our oncologist saying that the number of circulating lymphocytes can appear lower when they are off fighting melanoma cells…. 

                                Good luck.  One more week of daily infusions… Nice to have that behind you.

                                If you have any questions about the home injections let me know.

                                Kelly

                                ockelly
                                Participant

                                  Donna

                                  My husband TJ is 9 week from completing his Interferon year.  I am an RN and I have followed his labs very closely throughout.  The low blood counts are a little misleading.  Interferon causes blood cells (particularly white blood cells) to clump together… they get sticky and so the complete blood count numbers aren't always accurate.  Yes the treatment does cause lower WBCs but probably not as low as you are seeing on paper.    We watched his neutrophils the closest.  On the lab results you'll see 'neutrophils abs' listed a few lines below neutrophils.  This is the ANC (absolute neutrophil count) and the lower it is the more susceptible your husband would be to getting an infection.  

                                  Our oncologists rule of thumb was if the ANC went below .6 (sometimes referred to as 600) then we would have to lower his dose.  He got to .6 a few times but never below so he never had a dose change.  HIs ANC has stayed low all year.  Most of the time it is 1.0 but he didn't catch any bugs.  He did have one serious infection over the summer.  He had pulled a muscle in his groin.  It became swollen and he also had a low grade fever.  We didn't think much of the  fever and still gave his Interferon that night.  The next morning he had a high fever and huge cellulitis from his groin to his knee.  He ended up in the hospital on IV antibiotics for 3 days.  I mention this only to let you know that what would be a minor infection for someone else can get out of control during treatment… after all we're  boosting their immune response right.  Be sure to be in contact with your oncologist if your husband gets sick beyond side effects.  They"ll probably have you hold a dose.  We all got flu shots since TJ can't… 

                                  As far as the lymphocytes go, I've never heard concerns about having a low count.  I remember our oncologist saying that the number of circulating lymphocytes can appear lower when they are off fighting melanoma cells…. 

                                  Good luck.  One more week of daily infusions… Nice to have that behind you.

                                  If you have any questions about the home injections let me know.

                                  Kelly

                                  ockelly
                                  Participant

                                    Donna

                                    My husband TJ is 9 week from completing his Interferon year.  I am an RN and I have followed his labs very closely throughout.  The low blood counts are a little misleading.  Interferon causes blood cells (particularly white blood cells) to clump together… they get sticky and so the complete blood count numbers aren't always accurate.  Yes the treatment does cause lower WBCs but probably not as low as you are seeing on paper.    We watched his neutrophils the closest.  On the lab results you'll see 'neutrophils abs' listed a few lines below neutrophils.  This is the ANC (absolute neutrophil count) and the lower it is the more susceptible your husband would be to getting an infection.  

                                    Our oncologists rule of thumb was if the ANC went below .6 (sometimes referred to as 600) then we would have to lower his dose.  He got to .6 a few times but never below so he never had a dose change.  HIs ANC has stayed low all year.  Most of the time it is 1.0 but he didn't catch any bugs.  He did have one serious infection over the summer.  He had pulled a muscle in his groin.  It became swollen and he also had a low grade fever.  We didn't think much of the  fever and still gave his Interferon that night.  The next morning he had a high fever and huge cellulitis from his groin to his knee.  He ended up in the hospital on IV antibiotics for 3 days.  I mention this only to let you know that what would be a minor infection for someone else can get out of control during treatment… after all we're  boosting their immune response right.  Be sure to be in contact with your oncologist if your husband gets sick beyond side effects.  They"ll probably have you hold a dose.  We all got flu shots since TJ can't… 

                                    As far as the lymphocytes go, I've never heard concerns about having a low count.  I remember our oncologist saying that the number of circulating lymphocytes can appear lower when they are off fighting melanoma cells…. 

                                    Good luck.  One more week of daily infusions… Nice to have that behind you.

                                    If you have any questions about the home injections let me know.

                                    Kelly

                                Viewing 14 reply threads