› Forums › General Melanoma Community › I’m glad I found this forum
- This topic has 18 replies, 5 voices, and was last updated 10 years, 5 months ago by
POW.
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- December 27, 2013 at 3:20 am
I have been reading entries on this bulletin board all day today. It's nice to know I am not alone in this fight. My husband was diagnosed with nodular melanoma in April 2011. After 2 surgeries and a SNB, they also found he had a rare lymphoma. My husband is a healthy, active man that has been, & remains asymptotic. Since he was diagnosed, he has had 5 surgeries, no treatments. He had a lung nodule removed in march of this year & we have CT's every 3 months – so far so good.
As you all know, this a nightmare roller coaster ride that you just want to wake up from. I don't talk about it a lot because I find that it's hard for people to understand what we are going through. I appreciate everyone's openness & honesty on this site. I finally found people that live what I live, feel what I feel, & have the same questions, concerns & worries that I am experiencing. God bless & I pray for you all
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- December 27, 2013 at 3:43 am
Yep, we offer welcome and sympathy as well as UNDERSTANDING!
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- December 27, 2013 at 3:43 am
Yep, we offer welcome and sympathy as well as UNDERSTANDING!
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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 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 4:13 am
Oh, man! Your husband's case is certainly a challenging one. I'm glad that you are at least consulting with MD Anderson on this; they are very, very good.
If therapies meant to work in conjunction with a normal immune system are not possible for him, you can look at targeted drugs like Zelboraf (is your husband's tumor BRAF positive?) or MEK. Another promising approach that is just starting in clinical trials is "antibody drug conjugates" (ADCs).
In ADCs, a toxic chemical is attached to an antibody that recognizes and binds to melanoma cells. This complex (antibody + chemo) is injected into the patient, the antibody is caried through the blood stream. When it recognizes melanoma cells, and the antibody binds to the melanoma the attached toxic chemical kills the melanoma cells. Note that you are NOT using your own immune system here; the anti-melanoma antibodies are injected.
You might be keeping your eyes open for announcements about clinical trials testing antibody drug conjugates.
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- December 28, 2013 at 4:13 am
Oh, man! Your husband's case is certainly a challenging one. I'm glad that you are at least consulting with MD Anderson on this; they are very, very good.
If therapies meant to work in conjunction with a normal immune system are not possible for him, you can look at targeted drugs like Zelboraf (is your husband's tumor BRAF positive?) or MEK. Another promising approach that is just starting in clinical trials is "antibody drug conjugates" (ADCs).
In ADCs, a toxic chemical is attached to an antibody that recognizes and binds to melanoma cells. This complex (antibody + chemo) is injected into the patient, the antibody is caried through the blood stream. When it recognizes melanoma cells, and the antibody binds to the melanoma the attached toxic chemical kills the melanoma cells. Note that you are NOT using your own immune system here; the anti-melanoma antibodies are injected.
You might be keeping your eyes open for announcements about clinical trials testing antibody drug conjugates.
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- December 28, 2013 at 4:13 am
Oh, man! Your husband's case is certainly a challenging one. I'm glad that you are at least consulting with MD Anderson on this; they are very, very good.
If therapies meant to work in conjunction with a normal immune system are not possible for him, you can look at targeted drugs like Zelboraf (is your husband's tumor BRAF positive?) or MEK. Another promising approach that is just starting in clinical trials is "antibody drug conjugates" (ADCs).
In ADCs, a toxic chemical is attached to an antibody that recognizes and binds to melanoma cells. This complex (antibody + chemo) is injected into the patient, the antibody is caried through the blood stream. When it recognizes melanoma cells, and the antibody binds to the melanoma the attached toxic chemical kills the melanoma cells. Note that you are NOT using your own immune system here; the anti-melanoma antibodies are injected.
You might be keeping your eyes open for announcements about clinical trials testing antibody drug conjugates.
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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 11:30 pm
We 'happened upon' my husbands mantle cell lymphoma – they found it during the pathology of the SNB for the initial melanoma surgery. Doc said it has nothing to do with the melanoma. It was dormant and could have stayed that way for years, but since they removed all evidence of melanoma, they treated the lymphoma. He finished chemo on dec 2011 & we have follow ups with the hematologist every 6 months. We are on the 3 month plan for the melanoma. Our doctors have never used the word 'terminal' for either of the cancers. Can it go away & then come back? Yes, but that doesn't mean it will never ever go away. There's always hope & they are developing new treatments. When my husband was diagnosed, I consulted with a Naturopath bcuz I wanted to make sure his body was healthy and his immune system was strong. I have found that having some control, even though it's small, helps me feel like I am doing something to help him. Hang in there and I pray you get good results next month.
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- December 27, 2013 at 11:30 pm
We 'happened upon' my husbands mantle cell lymphoma – they found it during the pathology of the SNB for the initial melanoma surgery. Doc said it has nothing to do with the melanoma. It was dormant and could have stayed that way for years, but since they removed all evidence of melanoma, they treated the lymphoma. He finished chemo on dec 2011 & we have follow ups with the hematologist every 6 months. We are on the 3 month plan for the melanoma. Our doctors have never used the word 'terminal' for either of the cancers. Can it go away & then come back? Yes, but that doesn't mean it will never ever go away. There's always hope & they are developing new treatments. When my husband was diagnosed, I consulted with a Naturopath bcuz I wanted to make sure his body was healthy and his immune system was strong. I have found that having some control, even though it's small, helps me feel like I am doing something to help him. Hang in there and I pray you get good results next month.
-
- December 27, 2013 at 11:30 pm
We 'happened upon' my husbands mantle cell lymphoma – they found it during the pathology of the SNB for the initial melanoma surgery. Doc said it has nothing to do with the melanoma. It was dormant and could have stayed that way for years, but since they removed all evidence of melanoma, they treated the lymphoma. He finished chemo on dec 2011 & we have follow ups with the hematologist every 6 months. We are on the 3 month plan for the melanoma. Our doctors have never used the word 'terminal' for either of the cancers. Can it go away & then come back? Yes, but that doesn't mean it will never ever go away. There's always hope & they are developing new treatments. When my husband was diagnosed, I consulted with a Naturopath bcuz I wanted to make sure his body was healthy and his immune system was strong. I have found that having some control, even though it's small, helps me feel like I am doing something to help him. Hang in there and I pray you get good results next month.
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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.
-
- 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 3:43 am
Yep, we offer welcome and sympathy as well as UNDERSTANDING!
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Tagged: cutaneous melanoma
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