Autoimmune Hemolytic Anemia

Hi there, I found out that I'm severely anemic. I'm having a bonemarrow biopsy,with a rituxin infusion. Has anyone had this i and how did it go?

I also. Have MZL....have been on w/w this whole time...but feel really tired all the time. I am so thankfu for all of you because I learn a lot by reading your experience. You are all heroes!

Thank you for any feedback.

Laura.

 

«13

Comments

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member
    Bone marrow biopsy and rituxin

    I had a bone marrow biopsy at the very beginning when I also got a needle biopsy and lymph nodes removed for biopsy. The pain after the bone marrow biopsy was minimal just a little like a sore spot at times. I was asleep when they did it because all was done at the same time under anesthesia. So not sure that helps. I read a lot about it and seems like some people say it is terrible and some act like it is no big deal. I was very anxious about it and ended up being nothing.

    I also got rituxin on my first day of treatment. My only reaction was a rash that they gave me Benadryl for and it went away in about 5-10 minutes. It did take all day about 6-7 hours to get the treatment. They start off slow and increase slowly if you are having no reactions. If you have a reaction they stop infusion flush the line (give Benadryl in my case )get everything under control. Then we start all over again. Start off slow and start working the flow rate of infusion up again. No pain, no nausea, really just sitting in a chair watching movie on my iPad .

    After the first infusion I did not have anymore reactions I have had a total of 5 so far. They go quicker once they realize you are not having reactions they increase the rate so it does not take all day.

    Some people do have more reactions and some have none at all. 

    Wishing you the best. Hope my experience gives you a little confidence  and takes  away some anxiety.

    Sandy Ray

  • Lauraisabel
    Lauraisabel Member Posts: 71
    Marginal low grade b lymphoma with hemolytic anemia

    I started my first round of rituxin.....so far it went well. The prednisone has helped with the cough and hemolytic anemia. Also my cat scan showed a nodule on my chest...so dr wants a pet scan...another thing to worry about.

    I will see dr to go over blood work tomorrow. Just very worried that something is changing and I don't want them to find anything.....had my spleen removed in 2001...that was a major operation!

    i really appreciate all your input because you all have gone thru so much....also I saw that people don't want to be on rituxin for more then 2 yrs. On my bill it days rituxin and at the bottom it says chemo....I was told that it was not chemo....I will ask dr. Have not had bmb yet because blood is not coagulating....taking vitamin k.

    If anyone had any feedback I would love it.

  • lindary
    lindary Member Posts: 711 Member
    Rituxan

    Rituxan is not chemo. Chemocare defines it as a monoclonal antibody   http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

    My Onc told me that a 2 year program of taking Rituxan every 8 weeks has shown to greatly increase the chances of the lymphoma staying in remission longer. One of the important things is to drink plenty of water the day of and for about 2 days after. I haven't read anywhere of someone who was on maintenace longer than that but I haven't really researched it that far. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    lindary said:

    Rituxan

    Rituxan is not chemo. Chemocare defines it as a monoclonal antibody   http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

    My Onc told me that a 2 year program of taking Rituxan every 8 weeks has shown to greatly increase the chances of the lymphoma staying in remission longer. One of the important things is to drink plenty of water the day of and for about 2 days after. I haven't read anywhere of someone who was on maintenace longer than that but I haven't really researched it that far. 

    A 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

  • po18guy
    po18guy Member Posts: 1,261 Member
    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.

  • Lauraisabel
    Lauraisabel Member Posts: 71
    Autoimmune hemolytic anemia..lupus anticoagulant

    Thank you so much for the info....just found out that I have lupus anticoagulant....and pet scan shows some activity in the lower lobe....they want to do a bonemarrow biopsy next week...to see exac what's going on...I'm so nervous that they are going to tell me I need chemo.....if so I will get a second opinion....It seems that every time I go in they find one more thing...also the facts that I have lupus anticoagulant...makes me worry about clots!!!,

    Does anyone have any though!!!!

    thank you!!!!!!

    Laura.

  • Lauraisabel
    Lauraisabel Member Posts: 71

    A 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

    Hemolytic anemia and lupus anticoagulant

    Thank you!

  • Lauraisabel
    Lauraisabel Member Posts: 71
    edited July 2017 #9
    lindary said:

    Rituxan

    Rituxan is not chemo. Chemocare defines it as a monoclonal antibody   http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

    My Onc told me that a 2 year program of taking Rituxan every 8 weeks has shown to greatly increase the chances of the lymphoma staying in remission longer. One of the important things is to drink plenty of water the day of and for about 2 days after. I haven't read anywhere of someone who was on maintenace longer than that but I haven't really researched it that far. 

    Hemolytic anemia and lupus anticoagulant...mzl

    thank you...I'm dealing with a spot on the lung that the pet scan said showed some activity...they will do a bonemarrow biopsy next week....also they thought I was not coagulating...and now I'm coagulating too much!

    laura 

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member

    Autoimmune hemolytic anemia..lupus anticoagulant

    Thank you so much for the info....just found out that I have lupus anticoagulant....and pet scan shows some activity in the lower lobe....they want to do a bonemarrow biopsy next week...to see exac what's going on...I'm so nervous that they are going to tell me I need chemo.....if so I will get a second opinion....It seems that every time I go in they find one more thing...also the facts that I have lupus anticoagulant...makes me worry about clots!!!,

    Does anyone have any though!!!!

    thank you!!!!!!

    Laura.

    Chemo

    I just wanted to encourage you. I know it is all scary right now. However chemo is not like the chemo we usually hear stories about. Is it fun? No  I promise though after having been through it and having come out on the other side there are lots of things worse than Chemo. It for sure is not like taking a vacation but I have had worse times with the flu. The biggest difference is Chemo last longer and the fatigue last longer. The actual severity Chemo was not that bad. Please understand there are lots of Types of Chemo. Mine was RCHOP for Lymphoma. Other Types may be easier and some harder. They have gotten much better at treating the side effects.

    My worst side effect was constipation. The second worse was the crash from Prednisone which is not even Chemo but a steroid given as part of RCHOP .

    Please let us know if we can help with any questions.

    Sandy Ray

  • Lauraisabel
    Lauraisabel Member Posts: 71
    Sandy Ray said:

    Chemo

    I just wanted to encourage you. I know it is all scary right now. However chemo is not like the chemo we usually hear stories about. Is it fun? No  I promise though after having been through it and having come out on the other side there are lots of things worse than Chemo. It for sure is not like taking a vacation but I have had worse times with the flu. The biggest difference is Chemo last longer and the fatigue last longer. The actual severity Chemo was not that bad. Please understand there are lots of Types of Chemo. Mine was RCHOP for Lymphoma. Other Types may be easier and some harder. They have gotten much better at treating the side effects.

    My worst side effect was constipation. The second worse was the crash from Prednisone which is not even Chemo but a steroid given as part of RCHOP .

    Please let us know if we can help with any questions.

    Sandy Ray

    Hemolytic anemia..mzl ..

    I'm taking the 70 mg of prednisone....thank you for you feedback..I'm just very scared...but talking to you does help.....I will get a 2nd opinion when the time comes....it's just that I heard devastating things about chemo....

    i know that everyone is different.....just hoping that it's not cancer...and just an infected lymphnode.....

    laura 

  • Lauraisabel
    Lauraisabel Member Posts: 71
    Sandy Ray said:

    Chemo

    I just wanted to encourage you. I know it is all scary right now. However chemo is not like the chemo we usually hear stories about. Is it fun? No  I promise though after having been through it and having come out on the other side there are lots of things worse than Chemo. It for sure is not like taking a vacation but I have had worse times with the flu. The biggest difference is Chemo last longer and the fatigue last longer. The actual severity Chemo was not that bad. Please understand there are lots of Types of Chemo. Mine was RCHOP for Lymphoma. Other Types may be easier and some harder. They have gotten much better at treating the side effects.

    My worst side effect was constipation. The second worse was the crash from Prednisone which is not even Chemo but a steroid given as part of RCHOP .

    Please let us know if we can help with any questions.

    Sandy Ray

    Lymphoma

    how are you doing after chemo? Did you get a 2nd opinion when they told you what you had to do?

    Laura

  • Sandy Ray
    Sandy Ray Member Posts: 133 Member

    Lymphoma

    how are you doing after chemo? Did you get a 2nd opinion when they told you what you had to do?

    Laura

    Lymphoma

    Well I am fatigued but getting there. My last treatment was July 3. I got 3 opinioms and 4 if you count the fact my Oncologist called another Dr at a leading university hospital. However to put that in a little perspective. I was diagnosed with 2 Types of Lymphoma at the same time. One was the rarest type of Hodgkins there is and the other was a very rare type as well of Non-Hodgkins. One was indolent and the other was very aggressive. So with standard types of common Lymphoma the treatments are pretty well set. Mine on the other hand was very rare and even to add to the twist was 2 rare types at the same time . They still all agreed on the RCHOP so felt that was my best choice. I spent about $1,500.00 to fly to a leading university hospital just to get another opionon.

    i just point blank asked my local Oncologist if you were going to go to a leading medical institution for this type of Lymphoma where would it be. He gave me 2 I researched what he gave me chose one and went. He never had a problem with me getting more opinions. Hey even called someone else and was willing to tell me so. Ultimately the treatment was going to be the same so I stayed with the local guy. There was a place about an hour away that had nicer facilities and maybe some more onsite testing facility. If I had a lot of complications thst may have been a better option. However, he worked very hard for me whenever I needed anything. Always called me back after hours if I had a fever or anything that I needed to check on. I only called 2 both times a fever above the threshold of 100.5 which is important when getting Chemo.  I chose to have treatments about 25 minutes from home. When going through Chemo the fatigue sometimes makes thinking about an hour long drive just is added energy. Could not imagine if I had gone an hour away and had got stuck in traffic.

    So I gave you lots of background info. Anymore questions just ask.

  • lindary
    lindary Member Posts: 711 Member
    edited July 2017 #14
    Location-Location-Location

    Years ago a co-worker was diagnosed with multiple myeloma. A couple years after that a Cancer Treatment Centers of America to look into what kind of treatments they had for his cancer. He said it was very similar to what he was also getting. After a lot of positive comments about the place he said that he had to think how far he wanting to ride to get to his Dr/Onc/treatment center if he was "pucking his brains out".  

    So when I was diagnosed I stayed with the hospital near our house (15 mins) that has a cancer clinic as part of the complex. I did have to go into Chgo when I got the RICE because it was prep for Stem Cell. The Stem Cell was dropped for several reasons so I am back to our local hospital for everything. I can't complain about it at all. 

     

     

  • Lauraisabel
    Lauraisabel Member Posts: 71
    edited July 2017 #15
    Sandy Ray said:

    Lymphoma

    Well I am fatigued but getting there. My last treatment was July 3. I got 3 opinioms and 4 if you count the fact my Oncologist called another Dr at a leading university hospital. However to put that in a little perspective. I was diagnosed with 2 Types of Lymphoma at the same time. One was the rarest type of Hodgkins there is and the other was a very rare type as well of Non-Hodgkins. One was indolent and the other was very aggressive. So with standard types of common Lymphoma the treatments are pretty well set. Mine on the other hand was very rare and even to add to the twist was 2 rare types at the same time . They still all agreed on the RCHOP so felt that was my best choice. I spent about $1,500.00 to fly to a leading university hospital just to get another opionon.

    i just point blank asked my local Oncologist if you were going to go to a leading medical institution for this type of Lymphoma where would it be. He gave me 2 I researched what he gave me chose one and went. He never had a problem with me getting more opinions. Hey even called someone else and was willing to tell me so. Ultimately the treatment was going to be the same so I stayed with the local guy. There was a place about an hour away that had nicer facilities and maybe some more onsite testing facility. If I had a lot of complications thst may have been a better option. However, he worked very hard for me whenever I needed anything. Always called me back after hours if I had a fever or anything that I needed to check on. I only called 2 both times a fever above the threshold of 100.5 which is important when getting Chemo.  I chose to have treatments about 25 minutes from home. When going through Chemo the fatigue sometimes makes thinking about an hour long drive just is added energy. Could not imagine if I had gone an hour away and had got stuck in traffic.

    So I gave you lots of background info. Anymore questions just ask.

    Lymphoma

    Thank you....I guess I will see what they say about bonemarrow biopsy....

    I really appreciate your feedback....it's so nice to be able to talk to other people...

    laura

  • Lauraisabel
    Lauraisabel Member Posts: 71
    edited July 2017 #16
    lindary said:

    Location-Location-Location

    Years ago a co-worker was diagnosed with multiple myeloma. A couple years after that a Cancer Treatment Centers of America to look into what kind of treatments they had for his cancer. He said it was very similar to what he was also getting. After a lot of positive comments about the place he said that he had to think how far he wanting to ride to get to his Dr/Onc/treatment center if he was "pucking his brains out".  

    So when I was diagnosed I stayed with the hospital near our house (15 mins) that has a cancer clinic as part of the complex. I did have to go into Chgo when I got the RICE because it was prep for Stem Cell. The Stem Cell was dropped for several reasons so I am back to our local hospital for everything. I can't complain about it at all. 

     

     

    Lymphoma

    I will see what happens with the bone marrow biopsy...and from there I will seek a 2nd opinion...and stay within in my location....I wonder when they say there is activity in a pet scan....does that always mean cancer?

    laura

  • Lauraisabel
    Lauraisabel Member Posts: 71
    Lymphoma

    If your pet scan shows fdg reading of 3.7 ...is that usually cancer?

    laura

  • yesyes2
    yesyes2 Member Posts: 591
    edited July 2017 #18
    fdg readings

    It's been my experience that an increase in SUV does not always mean cancer.  I have had elevated rates which upon biopsy were classified as inflamation of  tissues, but non-cancerous.  This has happened to me at least three times, stomach, tail bone, throat.  Both times my NHL were diagnosed my suv's were over 20.  The second time my values were 35 and 38.  I had an up take value on a PET of 2.7,  left breast, and turned out to be a very early, stage zero breast cancer.  So in my experience the values can be all over the place on both cancer and non cancer.  Also it can be any type of cancer not just lymphoma, hence the need for biopsy.

     

  • Lauraisabel
    Lauraisabel Member Posts: 71
    yesyes2 said:

    fdg readings

    It's been my experience that an increase in SUV does not always mean cancer.  I have had elevated rates which upon biopsy were classified as inflamation of  tissues, but non-cancerous.  This has happened to me at least three times, stomach, tail bone, throat.  Both times my NHL were diagnosed my suv's were over 20.  The second time my values were 35 and 38.  I had an up take value on a PET of 2.7,  left breast, and turned out to be a very early, stage zero breast cancer.  So in my experience the values can be all over the place on both cancer and non cancer.  Also it can be any type of cancer not just lymphoma, hence the need for biopsy.

     

    Mzl hemolytic anemia

    thank you....they told me I could not have a biopsy because of where the nodule is....so I'm going to have a bonemarrow biopsy ...so I'm waiting to see what happens...

    laura

  • Lauraisabel
    Lauraisabel Member Posts: 71
    Mzl hemolytic anemia with lupus anticoagulant

    Had bonemarrow biopsy done...now waiting for results.....still on rituxin for 4 weeks...and baby aspirin...the waiting to see where all of this is going is hard....thanks for your suppor!

    laura 

  • Lauraisabel
    Lauraisabel Member Posts: 71
    edited July 2017 #21
    yesyes2 said:

    fdg readings

    It's been my experience that an increase in SUV does not always mean cancer.  I have had elevated rates which upon biopsy were classified as inflamation of  tissues, but non-cancerous.  This has happened to me at least three times, stomach, tail bone, throat.  Both times my NHL were diagnosed my suv's were over 20.  The second time my values were 35 and 38.  I had an up take value on a PET of 2.7,  left breast, and turned out to be a very early, stage zero breast cancer.  So in my experience the values can be all over the place on both cancer and non cancer.  Also it can be any type of cancer not just lymphoma, hence the need for biopsy.

     

    Mzl hemolytic anemia prednisone

    Thank you...I'm waiting for results...finished 4th infusion....

    lowering prednisone....bonemarrow biopsy went pretty good....

    thank you for all your feedback...it really helps me.Laura