My oncologist report says
"She does not have palpable lymphadenopathy, and the results
of the CT scan of the CAP does not show evidence for lymphadenopathy, or splenomegaly. This is consistent with stage I disease.
Reviewed the implications of mantle cell NHL, and how it can be a very aggressive tumor, and often requires aggressive high dose
chemo/immunotherapy and bone marrow transplant for long term disease control. However, for patients with early stage disease, normal
LDH levels, and no evidence for lymphadenopathy/splenomegaly or bone marrow suppression, observation is an appropriate response, as it
can take several years for the disease to progress.
If she shows progressive lymphocytosis, or develops new lymphadenopathy, will set up a staging PET/CT scan, and consider induction
chemo/immunotherapy, or referral for evaluation of high dose chemotherapy and ABMT. Because of the recent increase in the lymphocyte
count, will repeat a CBC in 3 months.
Understood. So we were diagnosed by different methods. My post-op lymph node ressection has not been fun. Fives weeks out and it still hasn't completely healed.
Regarding "watch and wait," at Stage 1 it sounds like you have time and that would be an appropriate option. With mine at stage 2 but no spread and appearing indolent, it's been suggested that it could be an option for me as well. I listened to an online seminar where a lymphoma specialist, Dr. Lauren Pinter-Brown, stated that "lymphoma may not and does not have to naturally progress from one stage to another." So I'm really really struggling with whether to begin treatment for my Stage 2 as my oncologist in Bangkok is recommending, or watch and wait as two other lymphoma experts in the US had suggested I might be able to do. It's stressing me out which I realize isn't good for my disease.
My oncologist report says
"She does not have palpable lymphadenopathy, and the results
of the CT scan of the CAP does not show evidence for lymphadenopathy, or splenomegaly. This is consistent with stage I disease.
Reviewed the implications of mantle cell NHL, and how it can be a very aggressive tumor, and often requires aggressive high dose
chemo/immunotherapy and bone marrow transplant for long term disease control. However, for patients with early stage disease, normal
LDH levels, and no evidence for lymphadenopathy/splenomegaly or bone marrow suppression, observation is an appropriate response, as it
can take several years for the disease to progress.
If she shows progressive lymphocytosis, or develops new lymphadenopathy, will set up a staging PET/CT scan, and consider induction
chemo/immunotherapy, or referral for evaluation of high dose chemotherapy and ABMT. Because of the recent increase in the lymphocyte
count, will repeat a CBC in 3 months.
Hi!
I'm afraid I don't know what 23+ and 23- mean. They found it during a routine physical with blood tests. I didn't have symptoms. It has not spread to any of my organs yet.
23+ and 23- refers to the observable physical properties of an organism (in this case, a lymph node). From what I understand, if the surgical report of the biopsied lymph node shows 23 positive or 23 negative, that that is a prognostic indicator of your disease. Did you have a full resected biopsy of one of your lymph nodes and/or a PET scan?
Hi - I'm 61 and was diagnosed with Mantle Cell Lymphoma a little over two weeks ago. I'd had swollen lymph nodes (largest 1.5cm) on both sides of my groin for 4 years with no real B symptoms (although very occasional night sweats around my neck/chest area). During those 4 years a myriad of doctors did CT's MRIs, ultrasounds, special blood tests etc. The 1.5cm node never got bigger during that time and all the doctors I saw said it didn't have the characteristics of anything malignant. In fact, when I would palpate it myself, it sometimes felt swollen and sometimes felt smaller which was strange.
My pulmonologist asked me to have the node biopsied (complete dissection) 2 months ago to rule out sarcoidosis. To my shock and dismay, the results came back Mantle Cell Lymphoma CD23+. Had a PET and bone marrow biopsy and it showed it was isolated in the right groin lymph nodes and had not spread yet. Doctor staged it at 2. It's really scary and I'm also terrified of both the treatment and disease.
I'm overseas so it makes it even more difficult to cope. The oncologist is recommending Rituximab and Bendomustine for 6 cycles (6 months), and depending on how I respond to it, possible maintenance therapy with Rituximab.
I called two Lymphoma oncologists in the US who a friend referred me to, and the one from MD Anderson said that at his hospital they probably would even offer to treat it at the moment and advise Watch and Wait only. The other oncologist also said he might recommend Watch and Wait or possibly localized radiation. But my fear is watch and wait for what? If it's eventually going to turn agressive and possibly spread, it would require more agressive treatment.
Can I ask you, is your MCL 23+ or 23-, what area of the body did they find it, and was it an incidental finding or did you have symptoms?
Hi!
I'm afraid I don't know what 23+ and 23- mean. They found it during a routine physical with blood tests. I didn't have symptoms. It has not spread to any of my organs yet.
I'm 64 and was diagnosed with Mantle Cell Lymphoma 2.5 years ago, stage 1. I'm still on "Watch and Wait", or "Waiting for the hammer to drop".
At my last appointment, my oncologist said the lymphoma is progressing but not enough for treatment. I go again for blood tests in 2 months.
It is scary, but I'm grateful to be at stage 1. I'm afraid of the treatment and of the disease.
My dr. said when the time comes, he will be able to get me into remission, but keeping me there will be a problem.
Hi - I'm 61 and was diagnosed with Mantle Cell Lymphoma a little over two weeks ago. I'd had swollen lymph nodes (largest 1.5cm) on both sides of my groin for 4 years with no real B symptoms (although very occasional night sweats around my neck/chest area). During those 4 years a myriad of doctors did CT's MRIs, ultrasounds, special blood tests etc. The 1.5cm node never got bigger during that time and all the doctors I saw said it didn't have the characteristics of anything malignant. In fact, when I would palpate it myself, it sometimes felt swollen and sometimes felt smaller which was strange.
My pulmonologist asked me to have the node biopsied (complete dissection) 2 months ago to rule out sarcoidosis. To my shock and dismay, the results came back Mantle Cell Lymphoma CD23+. Had a PET and bone marrow biopsy and it showed it was isolated in the right groin lymph nodes and had not spread yet. Doctor staged it at 2. It's really scary and I'm also terrified of both the treatment and disease.
I'm overseas so it makes it even more difficult to cope. The oncologist is recommending Rituximab and Bendomustine for 6 cycles (6 months), and depending on how I respond to it, possible maintenance therapy with Rituximab.
I called two Lymphoma oncologists in the US who a friend referred me to, and the one from MD Anderson said that at his hospital they probably would even offer to treat it at the moment and advise Watch and Wait only. The other oncologist also said he might recommend Watch and Wait or possibly localized radiation. But my fear is watch and wait for what? If it's eventually going to turn agressive and possibly spread, it would require more agressive treatment.
Can I ask you, is your MCL 23+ or 23-, what area of the body did they find it, and was it an incidental finding or did you have symptoms?
I'm 64 and was diagnosed with Mantle Cell Lymphoma 2.5 years ago, stage 1. I'm still on "Watch and Wait", or "Waiting for the hammer to drop".
At my last appointment, my oncologist said the lymphoma is progressing but not enough for treatment. I go again for blood tests in 2 months.
It is scary, but I'm grateful to be at stage 1. I'm afraid of the treatment and of the disease.
My dr. said when the time comes, he will be able to get me into remission, but keeping me there will be a problem.
noticed a lump on my shin. Got a biopsy and was diagnosed with b cell mantle. Took 4 rounds of chmo until my white blood cells got to low. Had a scan and found the chemo did nothing. Lump has almost tripled in size. Started radiation. Am now done 12 out of 20 sessions and the pain of all the sores from burning is almost unbearable. Is it worth keeping up with the rest of the radiation as no noticable difference?
@lknipple, this sounds very discouraging to say the least. I'm sorry to hear that standard treatments have not shown the results you and your team were hoping for. I'm hoping @roberthall0452@maxwell123@lottajoy@sweede536 will return to share their experiences with you.
lknipple, what type of chemotherapy did you have? Has your oncologist talked to you about other possibility like targeted therapy or immunotherapy or stem cell transplant? Are you being treated at a major cancer center?
noticed a lump on my shin. Got a biopsy and was diagnosed with b cell mantle. Took 4 rounds of chmo until my white blood cells got to low. Had a scan and found the chemo did nothing. Lump has almost tripled in size. Started radiation. Am now done 12 out of 20 sessions and the pain of all the sores from burning is almost unbearable. Is it worth keeping up with the rest of the radiation as no noticable difference?
I'm in stage 3 for 5 1/2 years. Retuxin fir 3 1/2 years. Im75 and its changed my skin on my hands to look like a 120 year old! I take a pack of medical supplies where ever I go as my skin tears and cuts like wet paper!!!
I was told by my Gzp that I most likely will not be able to get the vacine as my system will not except it. Will see my onacoligest Friday to see for sure! What a bumber!!!
Dennis
I'm stsge 3 and have been on treatments for 5 1/2 years. My skin now is so thin I have to take a pack of bandages with me where ever I go. I cut and tear like wet paper! Retuxin for 3 1/2 years
Dennis
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Understood. So we were diagnosed by different methods. My post-op lymph node ressection has not been fun. Fives weeks out and it still hasn't completely healed.
Regarding "watch and wait," at Stage 1 it sounds like you have time and that would be an appropriate option. With mine at stage 2 but no spread and appearing indolent, it's been suggested that it could be an option for me as well. I listened to an online seminar where a lymphoma specialist, Dr. Lauren Pinter-Brown, stated that "lymphoma may not and does not have to naturally progress from one stage to another." So I'm really really struggling with whether to begin treatment for my Stage 2 as my oncologist in Bangkok is recommending, or watch and wait as two other lymphoma experts in the US had suggested I might be able to do. It's stressing me out which I realize isn't good for my disease.
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Helpful -
Hug
1 ReactionMy oncologist report says
"She does not have palpable lymphadenopathy, and the results
of the CT scan of the CAP does not show evidence for lymphadenopathy, or splenomegaly. This is consistent with stage I disease.
Reviewed the implications of mantle cell NHL, and how it can be a very aggressive tumor, and often requires aggressive high dose
chemo/immunotherapy and bone marrow transplant for long term disease control. However, for patients with early stage disease, normal
LDH levels, and no evidence for lymphadenopathy/splenomegaly or bone marrow suppression, observation is an appropriate response, as it
can take several years for the disease to progress.
If she shows progressive lymphocytosis, or develops new lymphadenopathy, will set up a staging PET/CT scan, and consider induction
chemo/immunotherapy, or referral for evaluation of high dose chemotherapy and ABMT. Because of the recent increase in the lymphocyte
count, will repeat a CBC in 3 months.
23+ and 23- refers to the observable physical properties of an organism (in this case, a lymph node). From what I understand, if the surgical report of the biopsied lymph node shows 23 positive or 23 negative, that that is a prognostic indicator of your disease. Did you have a full resected biopsy of one of your lymph nodes and/or a PET scan?
Hi!
I'm afraid I don't know what 23+ and 23- mean. They found it during a routine physical with blood tests. I didn't have symptoms. It has not spread to any of my organs yet.
Hi - I'm 61 and was diagnosed with Mantle Cell Lymphoma a little over two weeks ago. I'd had swollen lymph nodes (largest 1.5cm) on both sides of my groin for 4 years with no real B symptoms (although very occasional night sweats around my neck/chest area). During those 4 years a myriad of doctors did CT's MRIs, ultrasounds, special blood tests etc. The 1.5cm node never got bigger during that time and all the doctors I saw said it didn't have the characteristics of anything malignant. In fact, when I would palpate it myself, it sometimes felt swollen and sometimes felt smaller which was strange.
My pulmonologist asked me to have the node biopsied (complete dissection) 2 months ago to rule out sarcoidosis. To my shock and dismay, the results came back Mantle Cell Lymphoma CD23+. Had a PET and bone marrow biopsy and it showed it was isolated in the right groin lymph nodes and had not spread yet. Doctor staged it at 2. It's really scary and I'm also terrified of both the treatment and disease.
I'm overseas so it makes it even more difficult to cope. The oncologist is recommending Rituximab and Bendomustine for 6 cycles (6 months), and depending on how I respond to it, possible maintenance therapy with Rituximab.
I called two Lymphoma oncologists in the US who a friend referred me to, and the one from MD Anderson said that at his hospital they probably would even offer to treat it at the moment and advise Watch and Wait only. The other oncologist also said he might recommend Watch and Wait or possibly localized radiation. But my fear is watch and wait for what? If it's eventually going to turn agressive and possibly spread, it would require more agressive treatment.
Can I ask you, is your MCL 23+ or 23-, what area of the body did they find it, and was it an incidental finding or did you have symptoms?
-
Like -
Helpful -
Hug
2 ReactionsI'm 64 and was diagnosed with Mantle Cell Lymphoma 2.5 years ago, stage 1. I'm still on "Watch and Wait", or "Waiting for the hammer to drop".
At my last appointment, my oncologist said the lymphoma is progressing but not enough for treatment. I go again for blood tests in 2 months.
It is scary, but I'm grateful to be at stage 1. I'm afraid of the treatment and of the disease.
My dr. said when the time comes, he will be able to get me into remission, but keeping me there will be a problem.
-
Like -
Helpful -
Hug
2 Reactions@lknipple, this sounds very discouraging to say the least. I'm sorry to hear that standard treatments have not shown the results you and your team were hoping for. I'm hoping @roberthall0452 @maxwell123 @lottajoy @sweede536 will return to share their experiences with you.
lknipple, what type of chemotherapy did you have? Has your oncologist talked to you about other possibility like targeted therapy or immunotherapy or stem cell transplant? Are you being treated at a major cancer center?
-
Like -
Helpful -
Hug
1 Reactionnoticed a lump on my shin. Got a biopsy and was diagnosed with b cell mantle. Took 4 rounds of chmo until my white blood cells got to low. Had a scan and found the chemo did nothing. Lump has almost tripled in size. Started radiation. Am now done 12 out of 20 sessions and the pain of all the sores from burning is almost unbearable. Is it worth keeping up with the rest of the radiation as no noticable difference?
-
Like -
Helpful -
Hug
1 ReactionI'm in stage 3 for 5 1/2 years. Retuxin fir 3 1/2 years. Im75 and its changed my skin on my hands to look like a 120 year old! I take a pack of medical supplies where ever I go as my skin tears and cuts like wet paper!!!
I was told by my Gzp that I most likely will not be able to get the vacine as my system will not except it. Will see my onacoligest Friday to see for sure! What a bumber!!!
Dennis
I'm stsge 3 and have been on treatments for 5 1/2 years. My skin now is so thin I have to take a pack of bandages with me where ever I go. I cut and tear like wet paper! Retuxin for 3 1/2 years
Dennis
-
Like -
Helpful -
Hug
1 Reaction