Arlenellen

Kathy,
When Dave started having symptoms the doctors told him he had Crohn’s disease. When the medication didn’t work they sent him to Mayo. They had the lymphoma diagnosis in one day. The specialist at Mayo said if you had to get cancer WM would be the one to choose since it was slow growing and pretty treatable. Of course that didn’t make us feel any better but over the years we have come to see how fortunate we really are. Although he has had some bad days, he has been able to live a pretty normal life. His biggest problem is fatigue and anemia. I’ve heard of WM folks walking around with IGMs of 10,000. Dave’s symptoms start kicking in when his IGM goes to 2000 so he usually needs more treatment more often. Rituxan has been his chemo of choice since he was diagnosed. It works very well for him but others react differently. What chemo are you going to start? What is your IGM? What other symptoms do you have. With WM you treat the symptoms not the numbers. Now for the melanoma, why is it that you can’t have treatment for that but you can have treatment for WM? I really am interested in why that can be since Dave may someday be in you situation. I’m so sorry for all you’re going through. It’s tough but hang in there and no that I’m thinking of you and wishing for the very best.
Arlene

Kathy,
When Dave started having symptoms the doctors told him he had Crohn’s disease. When the medication didn’t work they sent him to Mayo. They had the lymphoma diagnosis in one day. The specialist at Mayo said if you had to get cancer WM would be the one to choose since it was slow growing and pretty treatable. Of course that didn’t make us feel any better but over the years we have come to see how fortunate we really are. Although he has had some bad days, he has been able to live a pretty normal life. His biggest problem is fatigue and anemia. I’ve heard of WM folks walking around with IGMs of 10,000. Dave’s symptoms start kicking in when his IGM goes to 2000 so he usually needs more treatment more often. Rituxan has been his chemo of choice since he was diagnosed. It works very well for him but others react differently. What chemo are you going to start? What is your IGM? What other symptoms do you have. With WM you treat the symptoms not the numbers. Now for the melanoma, why is it that you can’t have treatment for that but you can have treatment for WM? I really am interested in why that can be since Dave may someday be in you situation. I’m so sorry for all you’re going through. It’s tough but hang in there and no that I’m thinking of you and wishing for the very best.
Arlene

Kathy,
When Dave started having symptoms the doctors told him he had Crohn’s disease. When the medication didn’t work they sent him to Mayo. They had the lymphoma diagnosis in one day. The specialist at Mayo said if you had to get cancer WM would be the one to choose since it was slow growing and pretty treatable. Of course that didn’t make us feel any better but over the years we have come to see how fortunate we really are. Although he has had some bad days, he has been able to live a pretty normal life. His biggest problem is fatigue and anemia. I’ve heard of WM folks walking around with IGMs of 10,000. Dave’s symptoms start kicking in when his IGM goes to 2000 so he usually needs more treatment more often. Rituxan has been his chemo of choice since he was diagnosed. It works very well for him but others react differently. What chemo are you going to start? What is your IGM? What other symptoms do you have. With WM you treat the symptoms not the numbers. Now for the melanoma, why is it that you can’t have treatment for that but you can have treatment for WM? I really am interested in why that can be since Dave may someday be in you situation. I’m so sorry for all you’re going through. It’s tough but hang in there and no that I’m thinking of you and wishing for the very best.
Arlene

Kathy,
Thanks for your reply. My husband has Waldenstrom’s also. He’s had it for 13 years. When were you diagnosed with it? I too am worried about the ramifications of having both of these diseases. Dave, my husband just finished six months of Bendamustine and Rituxan and had a very hard time with the chemo and his immune system is compomised. I’m just beginning to learn about melanoma and it scares me to death. The web site is a God send. Are you a member of the IWMF? They have website that is extremely helpful and they also have a listserve where you can ask questions. The participants are very, very knowledgable and I have learned so much from them. As for the melanoma dilemma…we are in the process of finding a melanoma specialist that will work with our WM specialist. Please keep in touch. Maybe we can give each other strength and hope.
Arlene

Kathy,
Thanks for your reply. My husband has Waldenstrom’s also. He’s had it for 13 years. When were you diagnosed with it? I too am worried about the ramifications of having both of these diseases. Dave, my husband just finished six months of Bendamustine and Rituxan and had a very hard time with the chemo and his immune system is compomised. I’m just beginning to learn about melanoma and it scares me to death. The web site is a God send. Are you a member of the IWMF? They have website that is extremely helpful and they also have a listserve where you can ask questions. The participants are very, very knowledgable and I have learned so much from them. As for the melanoma dilemma…we are in the process of finding a melanoma specialist that will work with our WM specialist. Please keep in touch. Maybe we can give each other strength and hope.
Arlene

Kathy,
Thanks for your reply. My husband has Waldenstrom’s also. He’s had it for 13 years. When were you diagnosed with it? I too am worried about the ramifications of having both of these diseases. Dave, my husband just finished six months of Bendamustine and Rituxan and had a very hard time with the chemo and his immune system is compomised. I’m just beginning to learn about melanoma and it scares me to death. The web site is a God send. Are you a member of the IWMF? They have website that is extremely helpful and they also have a listserve where you can ask questions. The participants are very, very knowledgable and I have learned so much from them. As for the melanoma dilemma…we are in the process of finding a melanoma specialist that will work with our WM specialist. Please keep in touch. Maybe we can give each other strength and hope.
Arlene

Still don’t understand. You said “all the visible melanoma was removed including the in situ portion”. But path report said they found residual melanoma in situ. Sorry to be so dense. Just trying to get everything straight.

Still don’t understand. You said “all the visible melanoma was removed including the in situ portion”. But path report said they found residual melanoma in situ. Sorry to be so dense. Just trying to get everything straight.

Still don’t understand. You said “all the visible melanoma was removed including the in situ portion”. But path report said they found residual melanoma in situ. Sorry to be so dense. Just trying to get everything straight.

I think our next step is to find a good melanoma specialist. This is all so new to us. I still don’t understand what the ramifications are regarding the residual melanoma in situ. Will it grow into another nodular melanoma? What kind of surgery would he need? He just finished six months of tough chemo for a rare lymphoma he’s been dealing with for 13 years. Needless to say he is pretty upset knowing he may have to have more surgery. Tough decisions are ahead.

I think our next step is to find a good melanoma specialist. This is all so new to us. I still don’t understand what the ramifications are regarding the residual melanoma in situ. Will it grow into another nodular melanoma? What kind of surgery would he need? He just finished six months of tough chemo for a rare lymphoma he’s been dealing with for 13 years. Needless to say he is pretty upset knowing he may have to have more surgery. Tough decisions are ahead.

I think our next step is to find a good melanoma specialist. This is all so new to us. I still don’t understand what the ramifications are regarding the residual melanoma in situ. Will it grow into another nodular melanoma? What kind of surgery would he need? He just finished six months of tough chemo for a rare lymphoma he’s been dealing with for 13 years. Needless to say he is pretty upset knowing he may have to have more surgery. Tough decisions are ahead.

Janner,
Thank you for your response. I’ll try to be more precise. My husband had a lesion on his cheek removed in march. The dermatologist did a shave biopsy. The path report came back as nodular melanoma. It was .95mm in depth. The dermatologist found us a surgeon. We went to the surgeon and because the lesion was so close to his mouth he told us we would need a plastic surgeon. When the surgeon came out of surgery he told me the plastic surgeon did the wide excision before he did the SLNB which I knew,from reading about the surgery was not the proper protocol. Anyway below is the path report.
Final diagnosis:
A. Excision right cheek lesion:
Residual melanoma in situ in a background of cicatrix
Melanoma in situ measures o.4 cm (4mm) in horizontal dimension and lies 0.4 cm from the nearest epidermal edge of resection (6:00-9:00)
All surgical margins negative for melanoma
No evidence of residual invasive melanoma.
B: Cervical sentinel lymph node:
Single lymph node negative for metastatic melanoma

Comments:
There is residual melanoma in situ within the previous biopsy area highlighted on a melanoma A immunostaining. There is no residual vertical component. The separately submitted sentinel node is negative for malignancy (H&E, Melanoma A and HMB45 immunostaining.)

There is then information on the staging study which is 1b.
Ancillary studies:
Immunohistochemisty;
Material: Block A3
Population: Tumor cells
Antibody Result
MART-1 (MELAN A) red chomogen. Positive

Sorry for such a lengthy note.

Arlene

Janner,
Thank you for your response. I’ll try to be more precise. My husband had a lesion on his cheek removed in march. The dermatologist did a shave biopsy. The path report came back as nodular melanoma. It was .95mm in depth. The dermatologist found us a surgeon. We went to the surgeon and because the lesion was so close to his mouth he told us we would need a plastic surgeon. When the surgeon came out of surgery he told me the plastic surgeon did the wide excision before he did the SLNB which I knew,from reading about the surgery was not the proper protocol. Anyway below is the path report.
Final diagnosis:
A. Excision right cheek lesion:
Residual melanoma in situ in a background of cicatrix
Melanoma in situ measures o.4 cm (4mm) in horizontal dimension and lies 0.4 cm from the nearest epidermal edge of resection (6:00-9:00)
All surgical margins negative for melanoma
No evidence of residual invasive melanoma.
B: Cervical sentinel lymph node:
Single lymph node negative for metastatic melanoma

Comments:
There is residual melanoma in situ within the previous biopsy area highlighted on a melanoma A immunostaining. There is no residual vertical component. The separately submitted sentinel node is negative for malignancy (H&E, Melanoma A and HMB45 immunostaining.)

There is then information on the staging study which is 1b.
Ancillary studies:
Immunohistochemisty;
Material: Block A3
Population: Tumor cells
Antibody Result
MART-1 (MELAN A) red chomogen. Positive

Sorry for such a lengthy note.

Arlene

Janner,
Thank you for your response. I’ll try to be more precise. My husband had a lesion on his cheek removed in march. The dermatologist did a shave biopsy. The path report came back as nodular melanoma. It was .95mm in depth. The dermatologist found us a surgeon. We went to the surgeon and because the lesion was so close to his mouth he told us we would need a plastic surgeon. When the surgeon came out of surgery he told me the plastic surgeon did the wide excision before he did the SLNB which I knew,from reading about the surgery was not the proper protocol. Anyway below is the path report.
Final diagnosis:
A. Excision right cheek lesion:
Residual melanoma in situ in a background of cicatrix
Melanoma in situ measures o.4 cm (4mm) in horizontal dimension and lies 0.4 cm from the nearest epidermal edge of resection (6:00-9:00)
All surgical margins negative for melanoma
No evidence of residual invasive melanoma.
B: Cervical sentinel lymph node:
Single lymph node negative for metastatic melanoma

Comments:
There is residual melanoma in situ within the previous biopsy area highlighted on a melanoma A immunostaining. There is no residual vertical component. The separately submitted sentinel node is negative for malignancy (H&E, Melanoma A and HMB45 immunostaining.)

There is then information on the staging study which is 1b.
Ancillary studies:
Immunohistochemisty;
Material: Block A3
Population: Tumor cells
Antibody Result
MART-1 (MELAN A) red chomogen. Positive

Sorry for such a lengthy note.

Arlene