Autoimmune Hemolytic Anemia

2

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  • Lauraisabel
    Lauraisabel Member Posts: 71
    edited August 2017 #22
    Hemolytic anemia...mzl

    Got results of bonemarrow biopsy....it's pretty much the same as 2013...but there is still a nodule that the pet scan showed activity....so would it not show on the bonemarrow? They want me tp repeat pet scan in 3 months...I want a second opinion......what do you think? Thank you for any feedback.....Laura

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #23
    Coverage

    Laura,

    It is clear that your docs are following your case closely and being very thorough. What you have is obviously extremely indolent (slow-moving, non-aggressive).  I would follow the doc's advice and simply recheck in three months.   In my view a second opinion is unnecessary, given the multitude of tests you've already received. Ask your own doc if he thinks a second opinion is warranted. He will give an honest opinion; it is an ethical requirement on any doctor's part to do so.

    For now, I would just relax and be thankful that all is apparantly non-threatening and lazy.  Three months in 'lymphoma time' is almost always irrelevant,

    max

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #24
    Max Former Hodgkins Stage 3 said:

    Coverage

    Laura,

    It is clear that your docs are following your case closely and being very thorough. What you have is obviously extremely indolent (slow-moving, non-aggressive).  I would follow the doc's advice and simply recheck in three months.   In my view a second opinion is unnecessary, given the multitude of tests you've already received. Ask your own doc if he thinks a second opinion is warranted. He will give an honest opinion; it is an ethical requirement on any doctor's part to do so.

    For now, I would just relax and be thankful that all is apparantly non-threatening and lazy.  Three months in 'lymphoma time' is almost always irrelevant,

    max

    Mzl hemolytic anemia

    Thank you for your feedback...the only reason that I was wanting a second opinion was because on the report it did mention that mds cannot be ruled out....that really scared me...it is a form of leukemia and it looks more serious then what I have now....

    laura 

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #25
    Rituxin

    Hi there...wanted to know if anyone had any side effects from Rituxin...I heard about possibly getting hepatitis a?...there were a whole bunch of different side effects and that got me nervous....I'm still not feeling the effects of the rituxin....thank you so much!!!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #26
    Lauraisabel said:

    Rituxin

    Hi there...wanted to know if anyone had any side effects from Rituxin...I heard about possibly getting hepatitis a?...there were a whole bunch of different side effects and that got me nervous....I'm still not feeling the effects of the rituxin....thank you so much!!!

    Hey

    Hi Laura. I don't have time to re-read this thread, but know that Rituxan was discussed quite a bit here before.

    Rituxan will not give anyone Hep A, or any other hepatitis.   I am including a link to all relevant facts a patient would need to knowregarding Rituxan.  Lindary posted this to you some time ago above. 

    The most common side-effect of Rituxan is chills, which occur during application and then fade away. Long-term muscle pain occures in a few people, and breathing issues are rare but sometimes happen.  Some people have serious initial reactions, but this is almost always just at their first infusion, and then they do not ordinarily recur.  Side-effects are  ordinarily controllable by adjusting the administration rate.  Among infused drugs for cancer, Rituxan is the mildest thing out there.

    http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

     

    .

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited September 2017 #27
    Max is right

    I had two infusions of Arzerra (Ofatumumab), a monoclonal antibody that is more potent than Rituxan. Aside from a mild-moderate allergic reaction at infusion - which was controlled by Benadryl - there were basically zero side effects.

  • yesyes2
    yesyes2 Member Posts: 591
    #28
    Side Effects

    I have been on Rituxan since January 2008, first for NHL and now for RA.  Actually there are some long term side effects from Rituxan such as continuous infections resulting from the reduction in your immune system.  Any long term infection coud possibly be traced to Rituxan.  I can no longer hold any immunizations, ie, flue shots, Pneumonia vaccinations, in my body because of my long term association with this drug.  And most all of my Ig levels are very reduced.  These are known side effects.  Also there is a brain infection which is almost universally fatal, can't recall the name.  There was a woman on the board several years ago whos husband died from this condition.  It is listed in the warnings for the use of Rituxan.  Even knowing all this I still use the drug because of the results it gives withut the usual side effects of chemo.

    BTW, I have never had any of the usual side effects of first infusion on this drug.   And I am aware that all drugs carry warnings and can have side effects.

     

     

     

     

     

     

     

     

     

     

     

     

  • yesyes2
    yesyes2 Member Posts: 591
    #29
    Here is the name

    Here is the infection I mentioned.  Viral infection of the brain called progressive multifocal leukoencephalopathy (PML)

  • Lauraisabel
    Lauraisabel Member Posts: 71
    edited October 2017 #30
    Max Former Hodgkins Stage 3 said:

    Hey

    Hi Laura. I don't have time to re-read this thread, but know that Rituxan was discussed quite a bit here before.

    Rituxan will not give anyone Hep A, or any other hepatitis.   I am including a link to all relevant facts a patient would need to knowregarding Rituxan.  Lindary posted this to you some time ago above. 

    The most common side-effect of Rituxan is chills, which occur during application and then fade away. Long-term muscle pain occures in a few people, and breathing issues are rare but sometimes happen.  Some people have serious initial reactions, but this is almost always just at their first infusion, and then they do not ordinarily recur.  Side-effects are  ordinarily controllable by adjusting the administration rate.  Among infused drugs for cancer, Rituxan is the mildest thing out there.

    http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

     

    .

    Thank you....my legs are

    Thank you....my legs are swollen...but I guess that's normal.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #31
    yesyes2 said:

    Here is the name

    Here is the infection I mentioned.  Viral infection of the brain called progressive multifocal leukoencephalopathy (PML)

    Ritux

    yesyes,

    I provided this link previously above. 

    http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

    The following does mention PML linkage, but its occurence must be profoundly rare.   Laura:  It also states that Rituxan can REACTIVATE Hep B in patients who ALREADY HAVE it, but it cannot "infect" people not already carrying it.

    http://www.rituxan.com/

    max

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #32
    Marker for rheumatoid arthritis

    Hi there..wanted some feedback about this..onc wants me to see a rheumatologist because I tested positive for those markers..have any of you tested positive?... also i had blood drawn and my red count was 9.3.   The next day it was at 8...dr wanted me to go to the er...i asked her to repeat the blood work...but on my other arm....blood work was 9.5.... i was so upset...so it seems that if they trouble drawing blood and they poke you a lot....reading won't be accurate....can't believe it!

  • yesyes2
    yesyes2 Member Posts: 591
    #33
    RA and Rituxan

    Hi Lauraisabel,

    As I stated in my above post I do have RA.  And yes I did test positive for the RA blood test markers.  I have been taking Rituxan for my RA for over 9 years.  Between my RCHOP for NHL and my Rituxan treatments for RA I have just had my 48th and 49th treatment of Rituxan.  The dosage of Rituxan for RA is higher than for lymphoma treatment.  But it's only fiven 4 times a year.

    I did know that if they have a difficult time drawing blood, especially if it is extracted slowly, the numbers will be inaccurate.  It was wise of you to insist the bloodwork be taken again.  I almost had my chemo not given once because a finger prick draw took too long to fill the syringe.  The following day it was retaken and in the acceptable range for someone getting chemo.

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #34
    yesyes2 said:

    RA and Rituxan

    Hi Lauraisabel,

    As I stated in my above post I do have RA.  And yes I did test positive for the RA blood test markers.  I have been taking Rituxan for my RA for over 9 years.  Between my RCHOP for NHL and my Rituxan treatments for RA I have just had my 48th and 49th treatment of Rituxan.  The dosage of Rituxan for RA is higher than for lymphoma treatment.  But it's only fiven 4 times a year.

    I did know that if they have a difficult time drawing blood, especially if it is extracted slowly, the numbers will be inaccurate.  It was wise of you to insist the bloodwork be taken again.  I almost had my chemo not given once because a finger prick draw took too long to fill the syringe.  The following day it was retaken and in the acceptable range for someone getting chemo.

    Ra and rituxan

    Thank you!!!

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #35
    Myeloproliferative disorder

    My platelets are high and my white lung is high...red count is low..dr. wants me to do a bonemarrow biopsy....again..had last one done 3 months ago and it looked fine. They are thinking I might have this disorder....does anyone else’s have it....it looks very grim and I am very worried...any feedback will be appreciated!

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #36
    po18guy said:

    Prednisone

    Many cancers arise in parts of the body which are inflamed. As an anti-inflammatory, Prednisone reduces inflammation - the inflammation which fosters the growth of cancer cells.

    Enormous amounts of lymphocytes in bone marrow

    Hi there.. wanted your advice..just had a bmb..no signs of anything different..dx with mzl..but my red counts are always low..so they saw that I have a lot of lymphocytes in my marrow...they want me to start Cytoxan together with rituxin and they are telling me it’s mild...would love to wait and see what my counts are ...don’t want to start something if I️ don’t have to...what do you know about this chemo...thank you!!!!

    laura 

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited November 2017 #37
    Lauraisabel said:

    Myeloproliferative disorder

    My platelets are high and my white lung is high...red count is low..dr. wants me to do a bonemarrow biopsy....again..had last one done 3 months ago and it looked fine. They are thinking I might have this disorder....does anyone else’s have it....it looks very grim and I am very worried...any feedback will be appreciated!

    It sounds like doctor wants

    It sounds like doctor wants to eliminate a condition such as MyeloDysplastic Syndrome (MDS) or perhaps MyeloFibrosis. I have had a version of MDS called 20q Deletion for at least the past two years. It occurs in the elderly or in those who have had extensive treatment. Two strikes in my case. 20q Deletion MDS is a slow growing, low risk variety, but some of the more agressive types (differing deletions/mutations in the DNA) can progress into leukemia. "Can" progress, not necessarily "do" progress. There is also a condition known as Polycythemia Vera - however all of your counts would be high in that case. Only a sample of your marrow will clear this up.

  • Lauraisabel
    Lauraisabel Member Posts: 71
    edited November 2017 #38
    po18guy said:

    It sounds like doctor wants

    It sounds like doctor wants to eliminate a condition such as MyeloDysplastic Syndrome (MDS) or perhaps MyeloFibrosis. I have had a version of MDS called 20q Deletion for at least the past two years. It occurs in the elderly or in those who have had extensive treatment. Two strikes in my case. 20q Deletion MDS is a slow growing, low risk variety, but some of the more agressive types (differing deletions/mutations in the DNA) can progress into leukemia. "Can" progress, not necessarily "do" progress. There is also a condition known as Polycythemia Vera - however all of your counts would be high in that case. Only a sample of your marrow will clear this up.

    Lymphocytes in the bone marrow

    so they ruled out everything...no leukemia..but so may lymphocytes so you think chemo which they are calling mild..will do the trick and get rid of the lymphocyte?

    it looks lik i have no choice..how mild is cytoxa!

    thank u

  • yesyes2
    yesyes2 Member Posts: 591
    edited November 2017 #39
    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

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited November 2017 #40
    Lauraisabel said:

    Lymphocytes in the bone marrow

    so they ruled out everything...no leukemia..but so may lymphocytes so you think chemo which they are calling mild..will do the trick and get rid of the lymphocyte?

    it looks lik i have no choice..how mild is cytoxa!

    thank u

    Lymphocytes are born in your marrow

    Are they mature lymphocytes?

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #41
    po18guy said:

    Lymphocytes are born in your marrow

    Are they mature lymphocytes?

    Lymphocytes

    It does not say....it says multiple lymphoid aggregates composed of mixed T and B cells. B cells are increased which is concerning for residual low grade b lymphoma.

    what do you think...

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