Lymphoma with bonemarrow biopsy

Lauraisabel
Lauraisabel Member Posts: 71
in Lymphoma (Hodgkin and Non-Hodgkin) #1




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!!!!




Comments

  • yesyes2
    yesyes2 Member Posts: 591
    edited August 2018 #2
    Iron Infusions

    Hi Lauraisabel,  So sorry you are continuing to have bone marrow problems.  Given your history I think a second opinion is a really good idea.  You did not specify if your doctor was a dedicated Hemotologist or if he/she also treats other types of cancer.  I think it's best to have a doctor who only sees blood cancers and hemotologic diseases.  

    My blood was showing low iron, for non specific reasons.  The cause was never found and over a 2 year period I became pretty animic.  I had 3 of the recommended 6 or 8 iron infusions.  The first was ok, the second I was sick for 3 days, the third I was sick for almost a week, worse than my 2 times with heavy duty chemo.  After a few month we switched to a different iron formula.  I had 2 infusions which were easier to tolerate but was a little ill with the second and would have refused a third.  After the last infusion my iron, ferritan and other level were way to elevated.  I was told not toworry as due to the infusions.  Over the past 1 12 years my counts did not return to normal.  In January I was diagnosed with a Myloproliferative Neoplasm ( bone marrow cancer).  First thing my Hemo/Onc said was, I've seen this happen with iron infusions before.  Now I am dealing with a cancer that can not be put into remission and creates many other health problems.  I'm not trying to scare you just telling you my experience with iron infusions.  I know there are other members who have had iron infusins, Max is one of them, and has had no problems.  I may just be an odd duck.  

    I wish you the best.  Please let us know what you decide to do.

    Leslie

     

  • Lauraisabel
    Lauraisabel Member Posts: 71
    edited August 2018 #3
    yesyes2 said:

    Iron Infusions

    Hi Lauraisabel,  So sorry you are continuing to have bone marrow problems.  Given your history I think a second opinion is a really good idea.  You did not specify if your doctor was a dedicated Hemotologist or if he/she also treats other types of cancer.  I think it's best to have a doctor who only sees blood cancers and hemotologic diseases.  

    My blood was showing low iron, for non specific reasons.  The cause was never found and over a 2 year period I became pretty animic.  I had 3 of the recommended 6 or 8 iron infusions.  The first was ok, the second I was sick for 3 days, the third I was sick for almost a week, worse than my 2 times with heavy duty chemo.  After a few month we switched to a different iron formula.  I had 2 infusions which were easier to tolerate but was a little ill with the second and would have refused a third.  After the last infusion my iron, ferritan and other level were way to elevated.  I was told not toworry as due to the infusions.  Over the past 1 12 years my counts did not return to normal.  In January I was diagnosed with a Myloproliferative Neoplasm ( bone marrow cancer).  First thing my Hemo/Onc said was, I've seen this happen with iron infusions before.  Now I am dealing with a cancer that can not be put into remission and creates many other health problems.  I'm not trying to scare you just telling you my experience with iron infusions.  I know there are other members who have had iron infusins, Max is one of them, and has had no problems.  I may just be an odd duck.  

    I wish you the best.  Please let us know what you decide to do.

    Leslie

     

    Iron infusions

    Thank you so much for the info....my oncologist is also a hemotologist....tomorrow I see another one at Moffitt...what I see is that a lot of things that we have to take to help us also hurts us...I know they want me to continue with rituxin....I hope Max can tell me how he felt After his iron infusion ..also my bonemarrow shows more T cell activity...I will le you know what they say...So you never really felt better?...after the iron? Which Max was the one that got infusio?

    thank you

    Laura

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #4
    Lauraisabel said:

    Iron infusions

    Thank you so much for the info....my oncologist is also a hemotologist....tomorrow I see another one at Moffitt...what I see is that a lot of things that we have to take to help us also hurts us...I know they want me to continue with rituxin....I hope Max can tell me how he felt After his iron infusion ..also my bonemarrow shows more T cell activity...I will le you know what they say...So you never really felt better?...after the iron? Which Max was the one that got infusio?

    thank you

    Laura

    Laura, I responded regarding iron infusions on your other thread.  Please take a look there.

    max

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #5
    Possible myelodysplastic syndrome

    Hi there everyone!...wanted to ask you a question......so had Bonemarrow biopsy....under comments..it says..right now there are no signs of mds....but they cannot rule it out...very scary that they even say that...can you tell me why the even say that?.mds is short for myelodysplastic syndrome......

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #6
    Max Former Hodgkins Stage 3 said:

    Laura, I responded regarding iron infusions on your other thread.  Please take a look there.

    max

    Possible myelodysplastic syndrome

    Hi there...why would My Bonemarrow biopsy say possible myelodisplastic syndome....they are saying no signs but not rule that out...why

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #7
    yesyes2 said:

    Iron Infusions

    Hi Lauraisabel,  So sorry you are continuing to have bone marrow problems.  Given your history I think a second opinion is a really good idea.  You did not specify if your doctor was a dedicated Hemotologist or if he/she also treats other types of cancer.  I think it's best to have a doctor who only sees blood cancers and hemotologic diseases.  

    My blood was showing low iron, for non specific reasons.  The cause was never found and over a 2 year period I became pretty animic.  I had 3 of the recommended 6 or 8 iron infusions.  The first was ok, the second I was sick for 3 days, the third I was sick for almost a week, worse than my 2 times with heavy duty chemo.  After a few month we switched to a different iron formula.  I had 2 infusions which were easier to tolerate but was a little ill with the second and would have refused a third.  After the last infusion my iron, ferritan and other level were way to elevated.  I was told not toworry as due to the infusions.  Over the past 1 12 years my counts did not return to normal.  In January I was diagnosed with a Myloproliferative Neoplasm ( bone marrow cancer).  First thing my Hemo/Onc said was, I've seen this happen with iron infusions before.  Now I am dealing with a cancer that can not be put into remission and creates many other health problems.  I'm not trying to scare you just telling you my experience with iron infusions.  I know there are other members who have had iron infusins, Max is one of them, and has had no problems.  I may just be an odd duck.  

    I wish you the best.  Please let us know what you decide to do.

    Leslie

     

    Possible myelodysplastic syndrome

    why would they say that from Bonemarrow....that The cannot rule this mds out?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #8
    Lauraisabel said:

    Possible myelodysplastic syndrome

    Hi there everyone!...wanted to ask you a question......so had Bonemarrow biopsy....under comments..it says..right now there are no signs of mds....but they cannot rule it out...very scary that they even say that...can you tell me why the even say that?.mds is short for myelodysplastic syndrome......

    Information

    Laura,

    I am unfamiliar with MDS.  The attached article is from the MDS Foundation. There are literally hundreds of other articles available, so you may find one that specifies what the pathologist reported to you.  The easiest and most direct way however is to simply ask your own Hematologist.  Intuitively, the pathologist's comments seem to be saying that your sample does not prove MDS active, but that other indicators suggest it may be present. This is no more than a literary evaluation of the sentence.  Po or some of the others may have a clearer read of the passage.

    max

    https://www.aamds.org/research-article/seroreactivity-lgl-leukemia-specific-epitopes-aplastic-anemia-myelodysplastic-syndr

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #9
    Max Former Hodgkins Stage 3 said:

    Information

    Laura,

    I am unfamiliar with MDS.  The attached article is from the MDS Foundation. There are literally hundreds of other articles available, so you may find one that specifies what the pathologist reported to you.  The easiest and most direct way however is to simply ask your own Hematologist.  Intuitively, the pathologist's comments seem to be saying that your sample does not prove MDS active, but that other indicators suggest it may be present. This is no more than a literary evaluation of the sentence.  Po or some of the others may have a clearer read of the passage.

    max

    https://www.aamds.org/research-article/seroreactivity-lgl-leukemia-specific-epitopes-aplastic-anemia-myelodysplastic-syndr

    Lymphoma

    Thank you!

  • po18guy
    po18guy Member Posts: 1,509 Member
    #10
    Lauraisabel said:

    Lymphoma

    Thank you!

    MDS

    Three years ago, I had MDS in my marrow at 26% blast cells, even though my only symptoms were from the two non-Hodgkin's lymphomas I had at the same tme. My variety was 20q deletion MDS, which is a low risk variety. Yet, at 26% (most leukemias are diagnosed at anytihng over 20% blast cells), it must have been growing in there for quite some time. 

    The reason why they cannot rule MDS out is because to do so, they would have to examine every cell in your marrow - an impossibility. They may be responding to other circumstances which point toward it, but are not diagnostic of MDS.

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #11
    Pet scan with mild up take

    Hi there..it has been a while. I had a pet scan and it showed mild up take in a lymph node on my neck. It says that there is a small bilateral posterior cervical triangle lymph nodes associated with a mild degree of FDG avidity with SUV max reaching up to 2.6, Deauville score of 3. These measured about 5mm in diameter on prior pet ct and were not significantly hypermetabolic. On today's exam the nodes measure up to 9x10 mm. Findings concerning for active lymphoma. I'm so nervous because I don't know what to expect next and could it be an infection? I am going to see an ent and take the disk with me..but has anyone else had this and what happened. Thank you

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