elainejorden

Hello Monica,I had my lymph nodes removed from my left inguinal area  in 1992 and worked for many years following as a registered nurse standing on my feet many long hours.My Dr. reccomended I wear compression hose right away but I didn't do so until about 3 years later when i started to develop lymphedema,now I wear it constantly,not only to help reduce the swelling but for the comfort as well.I'm still very active,walk a lot,elavate,and have done physio and manuel drainage and used the pump in the past and keep it fairly well under control.As Sharyn said the swelling is not extreme but I don't let it get out of hand either.I too live in N.B. and was contacted some time ago by some folks from a lympedema clinic in Fredericton.I didn't attend and don't know if it is still active or not.Best of luck and just take care not to cut or get infection in that leg.I am in Saint John,where are you?Elaine

Hello Monica,I had my lymph nodes removed from my left inguinal area  in 1992 and worked for many years following as a registered nurse standing on my feet many long hours.My Dr. reccomended I wear compression hose right away but I didn't do so until about 3 years later when i started to develop lymphedema,now I wear it constantly,not only to help reduce the swelling but for the comfort as well.I'm still very active,walk a lot,elavate,and have done physio and manuel drainage and used the pump in the past and keep it fairly well under control.As Sharyn said the swelling is not extreme but I don't let it get out of hand either.I too live in N.B. and was contacted some time ago by some folks from a lympedema clinic in Fredericton.I didn't attend and don't know if it is still active or not.Best of luck and just take care not to cut or get infection in that leg.I am in Saint John,where are you?Elaine

I am a stage 1V and have taken celebrex  300 mgm /day for about the last 5 years.I have been NED since I completed the Dartmouth Protocol of chemo in 2007.I feel I'm getting 2jobs done as not only might it be effective in preventing further mel. reoccurances but is also helping my arthritis pain which seems to be escalating lately ,so just this week I have increased  my dosage to 400 mgm/ day.It has been 20 years since my first diagnosis.Elaine (Canada)

I am a stage 1V and have taken celebrex  300 mgm /day for about the last 5 years.I have been NED since I completed the Dartmouth Protocol of chemo in 2007.I feel I'm getting 2jobs done as not only might it be effective in preventing further mel. reoccurances but is also helping my arthritis pain which seems to be escalating lately ,so just this week I have increased  my dosage to 400 mgm/ day.It has been 20 years since my first diagnosis.Elaine (Canada)

Hi Monica,I just read your post and see you are from NB. I live in saint John and started my melanoma journey 21 years ago with a  skin lesion on my back,Dr.LaLande (a plastic surgeon )removed it as well as another on my lower left leg,which required a skin graft and 7 more benign lesions from my other leg.No treatment followed and it reoccured in my right inguanal lymph nodes 2 years later.More surgery to remove the nodes and 1/2 of those removed were malignant.This was followed by 5 weeks of radiation,and back in those days I was offered a drug called levamisol taken by mouth 2days per week increasing the dose on the second day.This enhanced the immune system to do its job.I took this for 3 years and literally had the flue like symptoms  every weekend  so I could continue working as a nurse..This gave me a 10 year remission and lots of lymph edema in my leg which I now control with physio and compression hose.In July 2004 it returned with a vengence throughout my abdomen,wrapped around my aorta and attached to my right kidney.Nobody in Saint John or Halifax would consider surgery."What to do?"I contacted the Canadian Cancer society in Toronto and got an update of the latest treatments and clinical trials available in Canada,talked with my oncologist Dr. Margo Burnell in SJ and her advise was to go to the US for a clinical trial however I couldn't afford the cost  so I made contact with a Dr. Sal Verma in Ottawa that I heard deals with melanoma pts.When I first got diagnosed I had corresponded with Premier Bourrasa of Quebec,with the plan that whatever treatment he took would be the best and I too wanted it.I learned his Dr. had been Dr. Verma initially, followed by treatment in the US.Unfortunately he didn't survive. Since I was given such a grave prognosis I researched and chose an aggressive form of chemo that was offered to me.It was called The Dartmouth Protocol a combination of carmustine,cystplatin and DTIC taken IV over 3 days every 3 weeks when my blood picture permitted.I took this for 19 months and had a 6 week break and continued with just DTIC for another 12 months.I've had a great response with shrinking of all tumors,areas gone from some organs.My 6 month prognosis has stretched into 6 years.I consulted  again with an oncology surgeon in Ottawa who suggested my residual areas are to widespread for surgery and as melanomas bleed so much we should play a wait and see game as all are small ,stable or gone.I do have side effects from the chemo but can deal with that.I live a very full and active life and am just back form a month travelling in Europe.I'm not sure what's keeping me here but I'm loving every minute of it and each day i'm alive it takes me that much closer to better treatments and even a cure.Best of luck.Elaine

Hi Monica,I just read your post and see you are from NB. I live in saint John and started my melanoma journey 21 years ago with a  skin lesion on my back,Dr.LaLande (a plastic surgeon )removed it as well as another on my lower left leg,which required a skin graft and 7 more benign lesions from my other leg.No treatment followed and it reoccured in my right inguanal lymph nodes 2 years later.More surgery to remove the nodes and 1/2 of those removed were malignant.This was followed by 5 weeks of radiation,and back in those days I was offered a drug called levamisol taken by mouth 2days per week increasing the dose on the second day.This enhanced the immune system to do its job.I took this for 3 years and literally had the flue like symptoms  every weekend  so I could continue working as a nurse..This gave me a 10 year remission and lots of lymph edema in my leg which I now control with physio and compression hose.In July 2004 it returned with a vengence throughout my abdomen,wrapped around my aorta and attached to my right kidney.Nobody in Saint John or Halifax would consider surgery."What to do?"I contacted the Canadian Cancer society in Toronto and got an update of the latest treatments and clinical trials available in Canada,talked with my oncologist Dr. Margo Burnell in SJ and her advise was to go to the US for a clinical trial however I couldn't afford the cost  so I made contact with a Dr. Sal Verma in Ottawa that I heard deals with melanoma pts.When I first got diagnosed I had corresponded with Premier Bourrasa of Quebec,with the plan that whatever treatment he took would be the best and I too wanted it.I learned his Dr. had been Dr. Verma initially, followed by treatment in the US.Unfortunately he didn't survive. Since I was given such a grave prognosis I researched and chose an aggressive form of chemo that was offered to me.It was called The Dartmouth Protocol a combination of carmustine,cystplatin and DTIC taken IV over 3 days every 3 weeks when my blood picture permitted.I took this for 19 months and had a 6 week break and continued with just DTIC for another 12 months.I've had a great response with shrinking of all tumors,areas gone from some organs.My 6 month prognosis has stretched into 6 years.I consulted  again with an oncology surgeon in Ottawa who suggested my residual areas are to widespread for surgery and as melanomas bleed so much we should play a wait and see game as all are small ,stable or gone.I do have side effects from the chemo but can deal with that.I live a very full and active life and am just back form a month travelling in Europe.I'm not sure what's keeping me here but I'm loving every minute of it and each day i'm alive it takes me that much closer to better treatments and even a cure.Best of luck.Elaine

Sorry to post late on this subject but I finally got my computer gliches solved.I'm a stage iV and responded very well to DTIC,carmustine and cystplatin which I took after my 3rd reoccurance in 2004 until 2007 and have had neg. scans since.I feel very positive with the results even though it was a rugged 2-1/2 years in treatment. I feel more confident every day as there's more to offer now if another incident occurs.I do enjoy life but am still aware that it is so unpredictable I"ve seen  many improvemnts being offered since I started this journey 20 years..Elaine(Canada)

Sorry to post late on this subject but I finally got my computer gliches solved.I'm a stage iV and responded very well to DTIC,carmustine and cystplatin which I took after my 3rd reoccurance in 2004 until 2007 and have had neg. scans since.I feel very positive with the results even though it was a rugged 2-1/2 years in treatment. I feel more confident every day as there's more to offer now if another incident occurs.I do enjoy life but am still aware that it is so unpredictable I"ve seen  many improvemnts being offered since I started this journey 20 years..Elaine(Canada)