Forum Replies Created
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- May 6, 2013 at 11:44 pm
Hi,
I am researching a simular question only in reverse. I have a rare form of Lymphoma that was not diagnoised until I was receiving the work up for the recently diagnoised Stage III Melanoma. I am told "you probably have had this Lymphoma for many years". So….was the melanoma an oportuntistic cancer from the weakend immune system? My Hem/Onc team says "could be". My search for answers goes on..
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- May 6, 2013 at 11:44 pm
Hi,
I am researching a simular question only in reverse. I have a rare form of Lymphoma that was not diagnoised until I was receiving the work up for the recently diagnoised Stage III Melanoma. I am told "you probably have had this Lymphoma for many years". So….was the melanoma an oportuntistic cancer from the weakend immune system? My Hem/Onc team says "could be". My search for answers goes on..
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- May 6, 2013 at 11:44 pm
Hi,
I am researching a simular question only in reverse. I have a rare form of Lymphoma that was not diagnoised until I was receiving the work up for the recently diagnoised Stage III Melanoma. I am told "you probably have had this Lymphoma for many years". So….was the melanoma an oportuntistic cancer from the weakend immune system? My Hem/Onc team says "could be". My search for answers goes on..
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- December 28, 2013 at 3:55 am
I am sorry "terminal" was my word. He said "no cure" if the stage III shows back up my immune system will be to compromised to recieve many of the treatments offered today to fight the melanoma. And by having the weakend immune I am at greater risk of the melanoma returning( MD Anderson agreed with this also) …..With the W-M Lymphoma the prognosis is 2-5 years. But hey! who knows what new drugs will come about in that time frame….look at he advances just in the past few years with melanoma! So I wait and watch….
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- December 28, 2013 at 3:55 am
I am sorry "terminal" was my word. He said "no cure" if the stage III shows back up my immune system will be to compromised to recieve many of the treatments offered today to fight the melanoma. And by having the weakend immune I am at greater risk of the melanoma returning( MD Anderson agreed with this also) …..With the W-M Lymphoma the prognosis is 2-5 years. But hey! who knows what new drugs will come about in that time frame….look at he advances just in the past few years with melanoma! So I wait and watch….
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- December 28, 2013 at 3:55 am
I am sorry "terminal" was my word. He said "no cure" if the stage III shows back up my immune system will be to compromised to recieve many of the treatments offered today to fight the melanoma. And by having the weakend immune I am at greater risk of the melanoma returning( MD Anderson agreed with this also) …..With the W-M Lymphoma the prognosis is 2-5 years. But hey! who knows what new drugs will come about in that time frame….look at he advances just in the past few years with melanoma! So I wait and watch….
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- December 27, 2013 at 7:50 pm
I read the wall every week but never post because I see my case as a little different than most on here. I too was diagnoised with a rare Lymphoma (Waldenstroum's Macroglobuleima Lymphoma) which has so far knocked me out of any trials. I was dignosised in Jan this year with stage IIIC melanoma. NED after surgery and Lymph node removal with one positive node. Past scans were negative. However I am now due for my one year f/u scan so I am worried of course. The lymphoma was diagnosised in March when I was geting the work up for clinical trials. The Lymphoma caused my immune system to be very low which prevents my body from fighting any invader including melanoma. Which may be why the melanoma developed and spread but we will never be sure of that.The docotrs pulled all my medical records and tracked the lymphoma back for at least 15 years but always misdiagnoised. So here I am with only the prayer that the melanoma was early and only in the one node and the surgery took it all away..I had to recieve chemo in May emergently for the lymphoma- though effective- it weakened my immune system even more….My Onc team says that I can now receive treatment for Melanoma "when" it returns as long as my Lymohma stays under control. But my favorite onoclogist reminds me these are both terminal cancers with no cure….only that he can not predict the time frame I have left….I just have to live with the facts! I am curious how many people have had the diagnosis of Lymphoma and then Melanoma….I suppose Melanoma is an opportunistic invader. At least seems that way in my case.
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- December 27, 2013 at 7:50 pm
I read the wall every week but never post because I see my case as a little different than most on here. I too was diagnoised with a rare Lymphoma (Waldenstroum's Macroglobuleima Lymphoma) which has so far knocked me out of any trials. I was dignosised in Jan this year with stage IIIC melanoma. NED after surgery and Lymph node removal with one positive node. Past scans were negative. However I am now due for my one year f/u scan so I am worried of course. The lymphoma was diagnosised in March when I was geting the work up for clinical trials. The Lymphoma caused my immune system to be very low which prevents my body from fighting any invader including melanoma. Which may be why the melanoma developed and spread but we will never be sure of that.The docotrs pulled all my medical records and tracked the lymphoma back for at least 15 years but always misdiagnoised. So here I am with only the prayer that the melanoma was early and only in the one node and the surgery took it all away..I had to recieve chemo in May emergently for the lymphoma- though effective- it weakened my immune system even more….My Onc team says that I can now receive treatment for Melanoma "when" it returns as long as my Lymohma stays under control. But my favorite onoclogist reminds me these are both terminal cancers with no cure….only that he can not predict the time frame I have left….I just have to live with the facts! I am curious how many people have had the diagnosis of Lymphoma and then Melanoma….I suppose Melanoma is an opportunistic invader. At least seems that way in my case.
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- December 27, 2013 at 7:50 pm
I read the wall every week but never post because I see my case as a little different than most on here. I too was diagnoised with a rare Lymphoma (Waldenstroum's Macroglobuleima Lymphoma) which has so far knocked me out of any trials. I was dignosised in Jan this year with stage IIIC melanoma. NED after surgery and Lymph node removal with one positive node. Past scans were negative. However I am now due for my one year f/u scan so I am worried of course. The lymphoma was diagnosised in March when I was geting the work up for clinical trials. The Lymphoma caused my immune system to be very low which prevents my body from fighting any invader including melanoma. Which may be why the melanoma developed and spread but we will never be sure of that.The docotrs pulled all my medical records and tracked the lymphoma back for at least 15 years but always misdiagnoised. So here I am with only the prayer that the melanoma was early and only in the one node and the surgery took it all away..I had to recieve chemo in May emergently for the lymphoma- though effective- it weakened my immune system even more….My Onc team says that I can now receive treatment for Melanoma "when" it returns as long as my Lymohma stays under control. But my favorite onoclogist reminds me these are both terminal cancers with no cure….only that he can not predict the time frame I have left….I just have to live with the facts! I am curious how many people have had the diagnosis of Lymphoma and then Melanoma….I suppose Melanoma is an opportunistic invader. At least seems that way in my case.
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- June 10, 2013 at 5:45 pm
I recently was seen at MD ANderson and was very pleased. Though I feel it was a wasted trip and cost. As my immune system is to low at this point from the dx of Waldenstorums Macroglobuliema (Lymphoma)- I am not a able to recieve any type of intervention. So we will watchfully wait with the melanoma. I am Stage IIIc with one node( 1/25) postive a the left axillary area. In may my numbers (IGM >6000& Viscosity 7) required I start intervention for the W-M. I had Plasmapherisis x 2 treatment and OMGosh! After years of chronic nuerophathy and joint stiffness–I can move and am pain free. Years of miss diagnosis have lead to more than 13 years of pain that a blood test could have solved. It could be that my melanoma was opportunistic from the undiagnosised Lymphoma…so I ask my cancer team "what now?" I am told again we will watch and wait…MD Adnerson tells me that radiation is not recommeded much anymore..that they find it may accutally increase the growth of non growing small tumors…and my cancer team at LSU-HSC Shreveprot, Louisiana agrees. So I am receiveing chemo for the W-M and praying for NED on my next PET scan…I might add that I read also that Rocky Mountain Spotted Tick Fever may have something to do with later development of W-M Lymphoma..I had RMSTF in 1985…will be interesting to see how this all plays out…I can only say at this time I am watchful and enjoying this pain free body!
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- June 10, 2013 at 5:45 pm
I recently was seen at MD ANderson and was very pleased. Though I feel it was a wasted trip and cost. As my immune system is to low at this point from the dx of Waldenstorums Macroglobuliema (Lymphoma)- I am not a able to recieve any type of intervention. So we will watchfully wait with the melanoma. I am Stage IIIc with one node( 1/25) postive a the left axillary area. In may my numbers (IGM >6000& Viscosity 7) required I start intervention for the W-M. I had Plasmapherisis x 2 treatment and OMGosh! After years of chronic nuerophathy and joint stiffness–I can move and am pain free. Years of miss diagnosis have lead to more than 13 years of pain that a blood test could have solved. It could be that my melanoma was opportunistic from the undiagnosised Lymphoma…so I ask my cancer team "what now?" I am told again we will watch and wait…MD Adnerson tells me that radiation is not recommeded much anymore..that they find it may accutally increase the growth of non growing small tumors…and my cancer team at LSU-HSC Shreveprot, Louisiana agrees. So I am receiveing chemo for the W-M and praying for NED on my next PET scan…I might add that I read also that Rocky Mountain Spotted Tick Fever may have something to do with later development of W-M Lymphoma..I had RMSTF in 1985…will be interesting to see how this all plays out…I can only say at this time I am watchful and enjoying this pain free body!
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- June 10, 2013 at 5:45 pm
I recently was seen at MD ANderson and was very pleased. Though I feel it was a wasted trip and cost. As my immune system is to low at this point from the dx of Waldenstorums Macroglobuliema (Lymphoma)- I am not a able to recieve any type of intervention. So we will watchfully wait with the melanoma. I am Stage IIIc with one node( 1/25) postive a the left axillary area. In may my numbers (IGM >6000& Viscosity 7) required I start intervention for the W-M. I had Plasmapherisis x 2 treatment and OMGosh! After years of chronic nuerophathy and joint stiffness–I can move and am pain free. Years of miss diagnosis have lead to more than 13 years of pain that a blood test could have solved. It could be that my melanoma was opportunistic from the undiagnosised Lymphoma…so I ask my cancer team "what now?" I am told again we will watch and wait…MD Adnerson tells me that radiation is not recommeded much anymore..that they find it may accutally increase the growth of non growing small tumors…and my cancer team at LSU-HSC Shreveprot, Louisiana agrees. So I am receiveing chemo for the W-M and praying for NED on my next PET scan…I might add that I read also that Rocky Mountain Spotted Tick Fever may have something to do with later development of W-M Lymphoma..I had RMSTF in 1985…will be interesting to see how this all plays out…I can only say at this time I am watchful and enjoying this pain free body!
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- May 7, 2013 at 12:05 am
Arlene,
Dispite years of seeing different physicians for my neuropathy,elevated serum protein and other problems I was never given a clear diagnoisis. I have walked out of more MD offices than you can count(lol). My sysmtpoms started in my early 30"s – way young for this type of Lymphoma… I was diagnoised in January 2013 with melanoma. We all believed I had Breast cancer as the 4cm x 4cm lymph node was in the left axillary area. No mole changes any where that I could see. Turns out a tiny freckle of a mole on my left breast was the primary. During my work up for adjuant treatment options to everyones surprise( except me) my serum protein was 11.2- The hem/onc team did a bone marrow(ouch) and I recieved the diagnosis of WM. I am told that I will start chemo in 3 weeks if my IGM continues to climb. I am praying for no Chemo..So which do I worry about more..The stage III melanoma or the WM Lymphoma? lol…both! I was told by my team in Shreveport, Louisiana and at MD Anderson that I am not a candiate for any treatment for the melanoma due to the WM…Lordy, Lordy…What a life change in such a short time…My oldest daughter is now having the same symptoms at 38. W-M can pass around int he family. So we are worried, I was advised to have all my children(red-heads) tested and followed for life for both cancers. Please keep in touch…thanks for the info on the web site…I will go there..
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- May 7, 2013 at 12:05 am
Arlene,
Dispite years of seeing different physicians for my neuropathy,elevated serum protein and other problems I was never given a clear diagnoisis. I have walked out of more MD offices than you can count(lol). My sysmtpoms started in my early 30"s – way young for this type of Lymphoma… I was diagnoised in January 2013 with melanoma. We all believed I had Breast cancer as the 4cm x 4cm lymph node was in the left axillary area. No mole changes any where that I could see. Turns out a tiny freckle of a mole on my left breast was the primary. During my work up for adjuant treatment options to everyones surprise( except me) my serum protein was 11.2- The hem/onc team did a bone marrow(ouch) and I recieved the diagnosis of WM. I am told that I will start chemo in 3 weeks if my IGM continues to climb. I am praying for no Chemo..So which do I worry about more..The stage III melanoma or the WM Lymphoma? lol…both! I was told by my team in Shreveport, Louisiana and at MD Anderson that I am not a candiate for any treatment for the melanoma due to the WM…Lordy, Lordy…What a life change in such a short time…My oldest daughter is now having the same symptoms at 38. W-M can pass around int he family. So we are worried, I was advised to have all my children(red-heads) tested and followed for life for both cancers. Please keep in touch…thanks for the info on the web site…I will go there..
-
- May 7, 2013 at 12:05 am
Arlene,
Dispite years of seeing different physicians for my neuropathy,elevated serum protein and other problems I was never given a clear diagnoisis. I have walked out of more MD offices than you can count(lol). My sysmtpoms started in my early 30"s – way young for this type of Lymphoma… I was diagnoised in January 2013 with melanoma. We all believed I had Breast cancer as the 4cm x 4cm lymph node was in the left axillary area. No mole changes any where that I could see. Turns out a tiny freckle of a mole on my left breast was the primary. During my work up for adjuant treatment options to everyones surprise( except me) my serum protein was 11.2- The hem/onc team did a bone marrow(ouch) and I recieved the diagnosis of WM. I am told that I will start chemo in 3 weeks if my IGM continues to climb. I am praying for no Chemo..So which do I worry about more..The stage III melanoma or the WM Lymphoma? lol…both! I was told by my team in Shreveport, Louisiana and at MD Anderson that I am not a candiate for any treatment for the melanoma due to the WM…Lordy, Lordy…What a life change in such a short time…My oldest daughter is now having the same symptoms at 38. W-M can pass around int he family. So we are worried, I was advised to have all my children(red-heads) tested and followed for life for both cancers. Please keep in touch…thanks for the info on the web site…I will go there..
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