Blood Cancers & Disorders Support Group

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Comments (697)

Just checking in on how everyone is doing. This is essentially my only support. I've tried...

https://connect.mayoclinic.org/comment/1183216/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 2, 2024

I'm 79 male and burdened with 5 mutuated chromosome that manife s ted into MDS/AML having...

https://connect.mayoclinic.org/comment/1183124/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 2, 2024

I really don’t want to jump in on this site but my husband’s doctor told us...

https://connect.mayoclinic.org/comment/1111404/

Discussion: T cell large granulocytic leukemia

Support Group: Blood Cancers & Disorders

Posted: Jul 25, 2024

Hi, @5qdeletion. There are treatments for AML for patients who are older or unable to have...

https://connect.mayoclinic.org/comment/1030665/

Discussion: I just discovered I have leukemia

Support Group: Blood Cancers & Disorders

Posted: Mar 9, 2024

soonerfan. Thank you for posting. I'm at City of Hope in California. Who knew i would...

https://connect.mayoclinic.org/comment/1065951/

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

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

Posted: May 11, 2024

My husband apparently had MGUS for about 5 years but we didn’t really know it until...

https://connect.mayoclinic.org/comment/959673/

Discussion: MGUS with bone pain?

Support Group: Blood Cancers & Disorders

Posted: Nov 5, 2023

I also have mds/rars diagnosis. Started aranesp shots every other week and have had 2 iron...

https://connect.mayoclinic.org/comment/870886/

Discussion: MDS and cognitive decline

Support Group: Blood Cancers & Disorders

Posted: Jun 2, 2023

Hello. I was diagnosed at age 49 with CCUS back in September after a bone marrow...

https://connect.mayoclinic.org/comment/980353/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 14, 2023

Hello @jrwilli1, I am sorry that your husband's situation is so difficullt. I can only suggest...

https://connect.mayoclinic.org/comment/951249/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Oct 21, 2023

Ironically I just reached out to my husband’s team to ask about a new “rash” on...

https://connect.mayoclinic.org/comment/950088/

Discussion: Living with MDS (Myelodyplastic Syndromes)

Support Group: Blood Cancers & Disorders

Posted: Oct 19, 2023

Hi Howard…thinking about you this morning as you start your new treatment! I know how scary...

https://connect.mayoclinic.org/comment/828888/

Discussion: MDS treatment options other than bone marrow transplant

Support Group: Blood Cancers & Disorders

Posted: Mar 20, 2023

Thanks for the question. I was diagnosed with Thrombocytosis, Essential Thrombocythemia and JAK2 gene mutation over...

https://connect.mayoclinic.org/comment/328592/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: Feb 16, 2021

Hi Lori - Wanted to update you on my visit with the new hematologist yesterday. Well...

https://connect.mayoclinic.org/comment/1263978/

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

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

Posted: Mar 22 9:32am

My husband was first diagnosed with MM because of low white blood counts. Now after 3...

https://connect.mayoclinic.org/comment/296800/

Discussion: Leukopenia ( low white blood count)

Support Group: Blood Cancers & Disorders

Posted: Oct 21, 2020

Hi there, I was diagnosed with ET last March. My platelets were 1,200. I began taking...

https://connect.mayoclinic.org/comment/1035173/

Discussion: Started Hydroxyurea: How long to see decrease in counts?

Support Group: Blood Cancers & Disorders

Posted: Mar 17, 2024

I too, have MDS. My platelets go up and down too, but as yet they haven't...

https://connect.mayoclinic.org/comment/1054226/

Discussion: MDS: Can someone explain how or why platelets go up or down quickly?

Support Group: Blood Cancers & Disorders

Posted: Apr 20, 2024

No idea either what "extended" means... but my husband also has MDS 5q deletion, diagnosed late...

https://connect.mayoclinic.org/comment/1215894/

Discussion: Anyone living with MDS Extended diagnosis experience?

Support Group: Blood Cancers & Disorders

Posted: Jan 18 4:11pm

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