Autoimmune Hemolytic Anemia
Comments
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Cytoxanyesyes2 said:Cytoxan
Hi,
I have had cytoxan twice. THe first time was in a breast cancer chemo called CMF and the second time was in my RCHOP chemo for NHL. As in combination I couldn't tell you how difficult it was, however I do know it caused my eyes to continuely tear. And it gave me headaches for days after the infusions. It also can cause you to lose your hair. The infusion usually took around an hour for the cytoxan drip part but because of the headaches it was given over at least a 2 hour period. Maybe you need to find out if you will be getting it in an IV or taking the pill form. Oh, it also can cause nausea so you would need meds for that if taking it in pill form.
Sorry I can't be more helpful. I can only relate my experiances and for me I could not classify as mild. But we are all different.
Leslie
The
Thank you....I’m supposed to be taking that with rituxin and 100mg of prednisone(the steroids is only for 5 days) Dr said this chemo is mild.....it sure does not sound like it is..it’s not a pill...it’s an iv
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Cytoxanyesyes2 said:Lauraisabel
Lauraisabel,
Taking Rituxan, cytoxen and the 5 day pulse of steroids is missing just 2 compnants of the standard RCHOP. Yes it is missing the harsher drugs but in my opinion is in no way mild. How often are you supposed to receive this treatment?
So 5 Times with 3 weeks rest in between..the dr Keeps on saying..mild mild. You probably won’t even loose your hair...
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Cytoxan
i wonder if there is another chemo that is milder..but I’m on blood thinners...it has to target the lymphocytes...
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Bonemarrow biopsy
So I had a bonemarrow biopsy done a week ago. Dr seemed nonchalant and did say I should get a second opinion with Moffit..which I’m Ok with..but she did say she wants me to have 2 iron infusions one week apart..it seems my body does not absorb it well...
also have a history of low grade b lymphoma...the report says..there are significant numbers of nodular and well circumscribed lymphoid aggregates comprised of small lymphoid cells with dense chromatin....with T cell predominance. The number of aggregates seen is somewhat atypical. Reticulin stain shows moderate fibrosis within the lymphoid aggregate....so now I’m seeing that B cells are less but more T cells.....does anyone have any idea?....I see a dr in 2days..and wanted your opinion...also has anyone had an iron infusion?
thank you so much for any feedback!!!!
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Iron infusionsA rose by any other name smelleth as sweet
Laura,
Linda (Lindary) is, as always, correct, as I too understand Rituxan. Traditional chemotherapy drugs are known as 'cytotoxic' agents: they kill cancer cells in the process of cell division. There are so many differing types (over 200 chemos FDA-recognized in the US) because scientists have found many differing points in the cell-division process to disrupt either the DNA or RNA strands from being able to replicate, and by using a multitude of differing chemicals in this cytotoxic process.
Rituxan is (as stated) a drug that operates differently: It produces monoclonal antibodies to allow the body itself to kill cancer, but does not kill directly. There are a variety of theser drugs in use, mostly developed within the last 20 years or less. Their offical names all end in '--mas', revferring to the fact that each are 'Monoclonal AntibodieS.'
Mas drugs and various immunotherapy agents are the primary advances in kiling cancer in the last decade. While they assist the body's own defenses, they are not technically called "chemo," but this is not a distinction most non-professionals are concerned about. "Rituxan" is probably routinely billed as "chemo" by oncology centers, but that is not really an issue or a mistake on their part. Rituxan is also routinely used agains Rheumatoid (inflammatory) arthritis, in patients for whom the usual first-line drugs have failed.
Prednisone, a steroid given with many of the most popular chemo drugs, is also often called a "chemo," but it is not cytotoxic either (but neither is it a monoclonal agent)....I don't want to get too complex in all this, and I hope Linda and my responses are of assistance,
max
Hi Max..did you get iron infusions.....how did that go?
Laura
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Two IssuesLauraisabel said:Bonemarrow biopsy
So I had a bonemarrow biopsy done a week ago. Dr seemed nonchalant and did say I should get a second opinion with Moffit..which I’m Ok with..but she did say she wants me to have 2 iron infusions one week apart..it seems my body does not absorb it well...
also have a history of low grade b lymphoma...the report says..there are significant numbers of nodular and well circumscribed lymphoid aggregates comprised of small lymphoid cells with dense chromatin....with T cell predominance. The number of aggregates seen is somewhat atypical. Reticulin stain shows moderate fibrosis within the lymphoid aggregate....so now I’m seeing that B cells are less but more T cells.....does anyone have any idea?....I see a dr in 2days..and wanted your opinion...also has anyone had an iron infusion?
thank you so much for any feedback!!!!
Hey Laura.
I will address two things. First, I saw where you asked me yesterday if I had received iron infusions. You must have spotted that on some other thread, because I didn't see it mentioned on this one (or I missed it), but regardless, yes, I have received IV iron. It was about two or three years after I finished chemo. I went in for an annual check. Prior to that, my labs had always been perfect. This time too, except severely anemic. My oncologist was worried, and had me checked for a variety of things, all negative. He also put me on four iron IVs, I believe over the course of two weeks. For some reason, that fixed everything. I was never again (to date) anemic. I asked the onc what his explanation was, and he said he absolutely did not have one. But he did say that initially he thought it was relapse.
Receiving iron IVs is almost always event-free. No real risks or side-effects in most cases. I had no side-effects at all.
Second, your biopsy results sound suspicious. Especially the large number of T-Cells, and the doctors recommendation for a second review. T-Cell disease is rare and often missed or misdiagnosed even in good pathology labs. You need a real expert review. But Moffitt is one of the best in the US.
"Low grade B lymphoma" means an indolent, non-aggressive strain; follicular is the most common of these.
Last year you were getting Cytoxan. That's another name for cyclophosphamide, a mainstream chemo found in CHOP, EPOCH, and many other combos. I believe it was yesyes who pointed out that this is a mainstream chemo, and in no sense "mild."
I recommend that you demand a careful review of all biopsies and pathology results. I also recommend that you CNS privately email Po18Guy right away and let him review your biopsy data in detail. He is the best T-cell guy here, ever.
Please keep sharing,
max
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Hmmm...Lauraisabel said:Bonemarrow biopsy
So I had a bonemarrow biopsy done a week ago. Dr seemed nonchalant and did say I should get a second opinion with Moffit..which I’m Ok with..but she did say she wants me to have 2 iron infusions one week apart..it seems my body does not absorb it well...
also have a history of low grade b lymphoma...the report says..there are significant numbers of nodular and well circumscribed lymphoid aggregates comprised of small lymphoid cells with dense chromatin....with T cell predominance. The number of aggregates seen is somewhat atypical. Reticulin stain shows moderate fibrosis within the lymphoid aggregate....so now I’m seeing that B cells are less but more T cells.....does anyone have any idea?....I see a dr in 2days..and wanted your opinion...also has anyone had an iron infusion?
thank you so much for any feedback!!!!
When I was first mis-diagnosed as not having a malignancy, the local pathology lab noted "abnormal B and T cells" in a matrix. What they did not know is that this is a characteristic of Angioimmunoblastic T-Cell Lymphoma (AITL). It is absolutely unique and the B-cells are abnormal but not malignant, while the T-cells are malignant. It is nothing to mess with, but there are four identified variants, at least one of which is known to wax and wane. The problem is that it can decide to stop waning and simply become aggressive. There is no standard therapy for it, other than clinical trial - if one is available.
I would get your biopsy sample(s) to Moffitt ASAP. You might have had a T-Cell Lymphoma all along - which is why treatment is not going as planned. One identifier of AITL is a charcteristic meshwork of fine blood vessels surrounding the tumor cells (the "Angio" in the name stands for angiogenesis - the creation of blood vessels to feed the tumor). Additionally, AITL causes the release of numerous cytokines which can produce AIHA, rash, joint pain, pleural effusions, incessant dry cough, shortness of breath and many other symptoms.
There is also the possibility that you have both MZL and a T-Cell Lymphoma - but still no cause to panic as long as you have a cutting edge hematologist on your case. Moffitt has one such hematologist in Dr. Lubomir Sokol.
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Iron infusionTwo Issues
Hey Laura.
I will address two things. First, I saw where you asked me yesterday if I had received iron infusions. You must have spotted that on some other thread, because I didn't see it mentioned on this one (or I missed it), but regardless, yes, I have received IV iron. It was about two or three years after I finished chemo. I went in for an annual check. Prior to that, my labs had always been perfect. This time too, except severely anemic. My oncologist was worried, and had me checked for a variety of things, all negative. He also put me on four iron IVs, I believe over the course of two weeks. For some reason, that fixed everything. I was never again (to date) anemic. I asked the onc what his explanation was, and he said he absolutely did not have one. But he did say that initially he thought it was relapse.
Receiving iron IVs is almost always event-free. No real risks or side-effects in most cases. I had no side-effects at all.
Second, your biopsy results sound suspicious. Especially the large number of T-Cells, and the doctors recommendation for a second review. T-Cell disease is rare and often missed or misdiagnosed even in good pathology labs. You need a real expert review. But Moffitt is one of the best in the US.
"Low grade B lymphoma" means an indolent, non-aggressive strain; follicular is the most common of these.
Last year you were getting Cytoxan. That's another name for cyclophosphamide, a mainstream chemo found in CHOP, EPOCH, and many other combos. I believe it was yesyes who pointed out that this is a mainstream chemo, and in no sense "mild."
I recommend that you demand a careful review of all biopsies and pathology results. I also recommend that you CNS privately email Po18Guy right away and let him review your biopsy data in detail. He is the best T-cell guy here, ever.
Please keep sharing,
max
thank you so much for your feedback....I am going to send PO18Guy a photo of my bmb...I want him to read it....but Dr Bello seemed not worried about my results except that she definitely was for me getting infusions of iron..since none marrow showed deficient...I will keep you posted....I’m so thankful that I have you!!!!
laura
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Bonemarrow biopsypo18guy said:Hmmm...
When I was first mis-diagnosed as not having a malignancy, the local pathology lab noted "abnormal B and T cells" in a matrix. What they did not know is that this is a characteristic of Angioimmunoblastic T-Cell Lymphoma (AITL). It is absolutely unique and the B-cells are abnormal but not malignant, while the T-cells are malignant. It is nothing to mess with, but there are four identified variants, at least one of which is known to wax and wane. The problem is that it can decide to stop waning and simply become aggressive. There is no standard therapy for it, other than clinical trial - if one is available.
I would get your biopsy sample(s) to Moffitt ASAP. You might have had a T-Cell Lymphoma all along - which is why treatment is not going as planned. One identifier of AITL is a charcteristic meshwork of fine blood vessels surrounding the tumor cells (the "Angio" in the name stands for angiogenesis - the creation of blood vessels to feed the tumor). Additionally, AITL causes the release of numerous cytokines which can produce AIHA, rash, joint pain, pleural effusions, incessant dry cough, shortness of breath and many other symptoms.
There is also the possibility that you have both MZL and a T-Cell Lymphoma - but still no cause to panic as long as you have a cutting edge hematologist on your case. Moffitt has one such hematologist in Dr. Lubomir Sokol.
Hi there...is there a way that I can send you a copy of report?
laura
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Bonemarrow biopsypo18guy said:Hmmm...
When I was first mis-diagnosed as not having a malignancy, the local pathology lab noted "abnormal B and T cells" in a matrix. What they did not know is that this is a characteristic of Angioimmunoblastic T-Cell Lymphoma (AITL). It is absolutely unique and the B-cells are abnormal but not malignant, while the T-cells are malignant. It is nothing to mess with, but there are four identified variants, at least one of which is known to wax and wane. The problem is that it can decide to stop waning and simply become aggressive. There is no standard therapy for it, other than clinical trial - if one is available.
I would get your biopsy sample(s) to Moffitt ASAP. You might have had a T-Cell Lymphoma all along - which is why treatment is not going as planned. One identifier of AITL is a charcteristic meshwork of fine blood vessels surrounding the tumor cells (the "Angio" in the name stands for angiogenesis - the creation of blood vessels to feed the tumor). Additionally, AITL causes the release of numerous cytokines which can produce AIHA, rash, joint pain, pleural effusions, incessant dry cough, shortness of breath and many other symptoms.
There is also the possibility that you have both MZL and a T-Cell Lymphoma - but still no cause to panic as long as you have a cutting edge hematologist on your case. Moffitt has one such hematologist in Dr. Lubomir Sokol.
Interpretation.... there are mixed b and T cells of uncertain significance.
There is a significant number of nodular and well circumscribed lymphoid aggregates comprised of small lymphoid cells with dense chromatin ....the aggregates are comprised of mixed B and T cells with an overall T cell predominance.
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Well...Lauraisabel said:Bonemarrow biopsy
Hi there...is there a way that I can send you a copy of report?
laura
You can post up some of the info, but reading and interpreting reports is far from my strong suit - if I even have one! Your best bet is still to have the biopsy sample (all recent examples, if available) sent to Moffitt/MD Anderson/Memorial Sloan Kettering or another world class facility for more sophisiticated pathology and diagnostics. As you are well aware, lymphoma can be diabolically dificult to properly identify.
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If I had to guess...Lauraisabel said:Bonemarrow biopsy
Interpretation.... there are mixed b and T cells of uncertain significance.
There is a significant number of nodular and well circumscribed lymphoid aggregates comprised of small lymphoid cells with dense chromatin ....the aggregates are comprised of mixed B and T cells with an overall T cell predominance.
The presence of T-Cells, especially thier predominance, seems to indicate that something unexplained is occurring. T-Cells, in particular, normally migrate from the marrow to the thymus, where they receive their education and then flow into blood and lymph for immune system duty. If the T lymphocytes are immature, it might mean an over production in the marrow. If they are mature, post-thymic T lymphocytes, then they have migrated to the marrow for some reason.
There is no mention of FISH or Flow Cytometry done on the sample. Without that information, it is basically impossible to determine if they are performing some immune function, or are replicating themselves in a malignant process. Thus, they need to go to the lab for further workup. You have been fighting this for some time. MZL is an indolent, chronic lymphoma, and one lives with it. However, the marrow aspirate is unusual enough that it warrants further investigation, IMO.
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Bonemarrow biopsyTwo Issues
Hey Laura.
I will address two things. First, I saw where you asked me yesterday if I had received iron infusions. You must have spotted that on some other thread, because I didn't see it mentioned on this one (or I missed it), but regardless, yes, I have received IV iron. It was about two or three years after I finished chemo. I went in for an annual check. Prior to that, my labs had always been perfect. This time too, except severely anemic. My oncologist was worried, and had me checked for a variety of things, all negative. He also put me on four iron IVs, I believe over the course of two weeks. For some reason, that fixed everything. I was never again (to date) anemic. I asked the onc what his explanation was, and he said he absolutely did not have one. But he did say that initially he thought it was relapse.
Receiving iron IVs is almost always event-free. No real risks or side-effects in most cases. I had no side-effects at all.
Second, your biopsy results sound suspicious. Especially the large number of T-Cells, and the doctors recommendation for a second review. T-Cell disease is rare and often missed or misdiagnosed even in good pathology labs. You need a real expert review. But Moffitt is one of the best in the US.
"Low grade B lymphoma" means an indolent, non-aggressive strain; follicular is the most common of these.
Last year you were getting Cytoxan. That's another name for cyclophosphamide, a mainstream chemo found in CHOP, EPOCH, and many other combos. I believe it was yesyes who pointed out that this is a mainstream chemo, and in no sense "mild."
I recommend that you demand a careful review of all biopsies and pathology results. I also recommend that you CNS privately email Po18Guy right away and let him review your biopsy data in detail. He is the best T-cell guy here, ever.
Please keep sharing,
max
So I had a bonemarrow biopsy done a week ago. Dr seemed nonchalant and did say I should get a second opinion with Moffit..which I’m Ok with..but she did say she wants me to have 2 iron infusions one week apart..it seems my body does not absorb it well...
also have a history of low grade b lymphoma...the report says..there are significant numbers of nodular and well circumscribed lymphoid aggregates comprised of small lymphoid cells with dense chromatin....with T cell predominance. The number of aggregates seen is somewhat atypical. Reticulin stain shows moderate fibrosis within the lymphoid aggregate....so now I’m seeing that B cells are less but more T cells.....does anyone have any idea?....I see a dr in 2days..and wanted your opinion...also has anyone had an iron infusion? update...had iron infusion last Monday...will have another in 10 days....so what they are saying is not to worry because it’s just because since I have B cell lymphoma....the cytOman was taking care of that...so you will see a “predominance” of T cells.....of course...that has me a little worried...
thank you so much for any feedback
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