Mantle Cell Lymphoma and MDS (RARS)

Posted by susan1000 @susan1000, Sep 16, 2022

Has anyone been treated for a combination of these? About 8 years I was diagnosed with MDS ( refractory anemia with ringed sideroblasts). Mantle cell lymphoma was diagnosed as a result of wait and see blood test results that were changing. Has anyone else been in this position and if so what was your treatment and outcome?

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Colleen Young, Connect Director | @colleenyoung | Sep 16, 2022

Hi @susan1000, welcome. You may wish to connect with others living with mantle cell lymphoma in this related discussion:
- Anyone else have Mantle Cell Lymphoma? https://connect.mayoclinic.org/discussion/mantle-cell-lymphoma/

In the past 8 years did you have symptoms related to your diagnosis of myelodysplastic syndrome (MDS) that required treatment? Or were you on watchful waiting? Is treatment being discussed to manage mantle cell lymphoma? Do you have symptoms?

hlmcneely | @hlmcneely | Sep 17, 2022

I’m interested in this discussion. I had been diagnosed with ITP years ago, no treatment, well actually no nothing. After platelets dropped I was sent to hematologists/ oncologist who had a bone marrow biopsy done. It showed a couple mutations and was sent to second oncologist who diagnosed me with MDS. He wants blood work done every two months. Next one on September 25 .

susan1000 | @susan1000 | Sep 17, 2022

In reply to @colleenyoung "Hi @susan1000, welcome. You may wish to connect with others living with mantle cell lymphoma in..." + (show)

In the past 8 years I have been on watchful waiting for MDS. I had low hemoglobin numbers on a routine blood test which resulted in a bone marrow biopsy to diagnose. CBC numbers remained fairly stable until the last year which triggered additional testing. An MRI discovered a growth on one kidney which led to many additional tests and a mantle cell lymphoma diagnosis. I have just started a chemo series of six - rituxamad and bendamustine. They were concerned anything stronger might be hard on my bone marrow. In addition the MDS seems to take an autologous bone marrow transplant off the table.

Colleen Young, Connect Director | @colleenyoung | Sep 17, 2022

In reply to @hlmcneely "I’m interested in this discussion. I had been diagnosed with ITP years ago, no treatment, well..." + (show)

Welcome @hlmcneely, great to connect with @susan1000 in this discussion.

You may also be interested in these related discussions:
- Myelodysplastic Syndrome (MDS) https://connect.mayoclinic.org/discussion/myelodysplastic-syndrome-mds-1/
- I have Myelodysplastic Syndrome (MDS) spawned from ITP https://connect.mayoclinic.org/discussion/i-have-myelodysplastic-syndrome-mds-that-spawned-from-idiopathic-thrombocytopenic-purpura-itp/

Susan can affirm the importance of monitoring. Hlmcneely, don’t be surprised if monitoring is the only “treatment” if you have no symptoms. It’s often called watchful waiting or active surveillance. Some people are nervous about watchful waiting. How are you doing?

hlmcneely | @hlmcneely | Sep 18, 2022

Actually fine. Only true symptoms are fatigue and bruising. I’ve learned get it done early lol. I’m 73 soon to be 74. Both drs said chemo but not now. Like the term watchful waiting.

Colleen Young, Connect Director | @colleenyoung | Sep 25, 2022

In reply to @hlmcneely "Actually fine. Only true symptoms are fatigue and bruising. I’ve learned get it done early lol...." + (show)

Thinking of you, @hlmcneely. I think you mentioned that you're getting more bloodwork done soon.

hlmcneely | @hlmcneely | Sep 25, 2022

Thank you Colleen. Yes in fact I had asked about why our platelets go up and down. Thank you for that answer. Tues the 20th had regular physical. Platelets 76 had blood work Friday the 23rd at hematologist / oncologist and they were 84. RBC high both and WBC low both.

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