Blood Cancers & Disorders Support Group

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Comments (843)

I am not having electrophoresis. Other people may have this treatment. I know there’s chemo oral...

https://connect.mayoclinic.org/comment/1164882/

Discussion: Diagnosed with Mycosis fungoides. Don’t understand what to expect?

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2024

Hello everyone, At first, they thought I had MDS, but then another doctor said CCUS. My...

https://connect.mayoclinic.org/comment/1138386/

Discussion: Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?

Support Group: Blood Cancers & Disorders

Posted: Sep 8, 2024

My husband has the same form of MDS. He has been on Lucpatercept injections for over...

https://connect.mayoclinic.org/comment/1082395/

Discussion: Anyone have or heard of MDS with 5q-syndrome?

Support Group: Blood Cancers & Disorders

Posted: Jun 7, 2024

Hi @shels93 It’s good to see you pop up again. The last time we spoke was...

https://connect.mayoclinic.org/comment/950192/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Oct 19, 2023

My husband was just diagnosed with MDS, and probably needless to say we are at a...

https://connect.mayoclinic.org/comment/757101/

Discussion: Low Platelets with Myelodysplastic Syndrome (MDS)

Support Group: Blood Cancers & Disorders

Posted: Oct 4, 2022

Hi, I saw this on the supraclavicular and finally looked it up. I have had a...

https://connect.mayoclinic.org/comment/1367865/

Discussion: What causes persistent swelling in the left supraclavicular?

Support Group: Blood Cancers & Disorders

Posted: Aug 10 4:11pm

Hi There... Was diagnosed about a month ago with MDS. I also have a DDX41 mutation...

https://connect.mayoclinic.org/comment/1188060/

Discussion: Does anyone else have AML with ddx41 genetic mutation?

Support Group: Blood Cancers & Disorders

Posted: Dec 10, 2024

I have been diagnosed with CCUS, too. I don't really know anything about how genes are...

https://connect.mayoclinic.org/comment/1135342/

Discussion: Anyone else have Clonal Cytopenia of Undetermined Significance (CCUS)?

Support Group: Blood Cancers & Disorders

Posted: Sep 3, 2024

Hi there, I have MDS/MPN overlap. I have the JAK2 mutation and have been on 500...

https://connect.mayoclinic.org/comment/1027326/

Discussion: Pain in Upper Left Abdomen

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2024

Hi @cherbarn. I’m sure this is shock for you coming on the heels of your back...

https://connect.mayoclinic.org/comment/1095046/

Discussion: I've had CML for 20 years and want to encourage others

Support Group: Blood Cancers & Disorders

Posted: Jun 27, 2024

Hi Kat! Wow, 52 days already? That’s crazy how fast the time has flown. Congratulations on...

https://connect.mayoclinic.org/comment/1078942/

Discussion: My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Jun 1, 2024

Hello @jag11, Welcome to Connect. Sorry to see that you haven't had any responses yet. There...

https://connect.mayoclinic.org/comment/1190946/

Discussion: Anyone dealing with Paroxysmal nocturnal hemoglobinuria (PNH)?

Support Group: Blood Cancers & Disorders

Posted: Dec 15, 2024

Receiving guidance on pregnancy/infertility is a good idea — with your Hematologist-Oncologist and GYN. From the...

https://connect.mayoclinic.org/comment/864174/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 21, 2023

Anne-Marie you are so very kind to have shared your experiences with me. I feel better...

https://connect.mayoclinic.org/comment/961270/

Discussion: Looking for experiences with the progression of MDS

Support Group: Blood Cancers & Disorders

Posted: Nov 8, 2023

hlmcneely, I am glad you posted. I do not have MDS, but i was reminded from...

https://connect.mayoclinic.org/comment/956062/

Discussion: Blood work question: Abnormal lymphocyte and Large Platelets?

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2023

Hi, @pmlind4. I’m sorry I missed your post earlier this month. As a refresher, here is...

https://connect.mayoclinic.org/comment/1268261/

Discussion: MDS (myelodysplastic syndrome): When to start treatment?

Support Group: Blood Cancers & Disorders

Posted: Mar 27 8:06pm

I get it… within the last 3 years my father passed away so the concept of...

https://connect.mayoclinic.org/comment/1386754/

Discussion: High Risk Myelodysplastic Syndrome: What to Expect?

Support Group: Blood Cancers & Disorders

Posted: Sep 4 3:33pm

Hi @littlebluebird, I’d be very cautious with using turmeric powder to control itching. While turmeric/curcumin can...

https://connect.mayoclinic.org/comment/1298018/

Discussion: Myelodysplastic syndrome (MDS) and skin itching

Support Group: Blood Cancers & Disorders

Posted: May 6 8:41am

Your experience is similar to my husband’s, though he has MDS 5q deletion, not MM. The...

https://connect.mayoclinic.org/comment/1199190/

Discussion: What are your experiences with lenalidomide (Revlimid) for MDS?

Support Group: Blood Cancers & Disorders

Posted: Dec 29, 2024

Hi Howard, I looked up the classification for your MDS-EB2 diagnosis. The EB-2 is the staging...

https://connect.mayoclinic.org/comment/821146/

Discussion: MDS treatment options other than bone marrow transplant

Support Group: Blood Cancers & Disorders

Posted: Mar 5, 2023