1. < Blood Cancers & Disorders

Looking for experiences with the progression of MDS

Posted by momz @momz, Nov 7, 2023

Good morning ,
I am looking for shared experiences with the progression of MDS and or other blood cancer. What are signs and or symptoms to be aware of . I am experiencing low WBC count and frequent headaches lately.
Staying proactive and aware of new symptoms.
Thank You ☺️ Brenda

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

momz | @momz | Nov 9, 2023
In reply to @germaine9 "Hi Brenda, You need to ask your hematologist if the kind of MDS you have is..." + (show)
@germaine9

Hi Brenda,
You need to ask your hematologist if the kind of MDS you have is likely to transform into AML. You also need to ask him/her if your BMB included next generation sequencing. This is important because it tells you what gene mutations you have, and there are some new targeted treatments for specific mutations. Hypomethylating agents such as Azacitidine which they also use to treat AML can sometimes slow down the progression of MDS to AML, but you are right. The only potential cure is a transplant which is a very scary and risky thing. Does your husband really understand the emotional impact this is all having on you? When I was diagnosed in 2011, there was still a dispute even in the medical community about whether or not MDS was really even cancer. I was told it was a “blood disorder.” So, uh, why was I being referred to a hematologist at the Cancer Treatment Centre for a bone marrow biopsy? Even now I have to explain to some people in my life that I didn’t just get blood cancer last year when I got diagnosed with AML. I’ve had blood cancer for 13 years!!! Sorry. Back to you. Where are you located? There are several MDS Centres of Excellence in the US and a few in Canada. Is your hematologist a specialist in MDS? If he/she isn’t, I would suggest that you ask for a second opinion from a hematologist at the closest Centre of Excellence to you. It will be easy to find on Google. I know how difficult it is to live with all the uncertainty, and I am now attending a support group for cancer patients which I find very helpful. I would suggest that you look into that too. Take care.
Anne-Marie

Jump to this post

Anne-Marie,
Hope you are having a great day. I do have a copy of my BMB report that includes:
Bone Marrow Morphology
10-color flow cytometry
Cytogenetics
Could this show my gene mutation anywhere?
I am not very knowledgeable 🥴
Brenda

REPLY
1 reply
momz | @momz | Nov 9, 2023
In reply to @jps01 "Brenda, I was dignosed a year ago. But it is probable that the MDS was present..." + (show)
@jps01

Brenda, I was dignosed a year ago. But it is probable that the MDS was present much earlier. But I had not had a normal blood test since 2017. A new doctor ordered one last Fall, and bingo, I was off to a hematologist, and the MDS diasgnostic.
Anne-Marie, may I ask you where are the MDS Centres of Excellence in Canada and in the US?

merci jean-pierre

Jump to this post

Jean-Pierre,
Could you explain what your test showed?
How are you feeling now on a daily basis?
Have you had any major symptoms that disrupted your activities?
Brenda 😊

REPLY
germaine9 | @germaine9 | Nov 9, 2023
In reply to @momz "Anne-Marie, Hope you are having a great day. I do have a copy of my BMB..." + (show)
@momz

Anne-Marie,
Hope you are having a great day. I do have a copy of my BMB report that includes:
Bone Marrow Morphology
10-color flow cytometry
Cytogenetics
Could this show my gene mutation anywhere?
I am not very knowledgeable 🥴
Brenda

Jump to this post

No, next generation sequencing is a relatively new test. If your doctor didn’t request it when he/she did your BMB, it wouldn’t have been done. Do you know what your IPSS-R score is? That will tell you whether you are high or low risk for developing AML.
Anne-Marie

REPLY
1 reply
germaine9 | @germaine9 | Nov 9, 2023
In reply to @jps01 "Brenda, I was dignosed a year ago. But it is probable that the MDS was present..." + (show)
@jps01

Brenda, I was dignosed a year ago. But it is probable that the MDS was present much earlier. But I had not had a normal blood test since 2017. A new doctor ordered one last Fall, and bingo, I was off to a hematologist, and the MDS diasgnostic.
Anne-Marie, may I ask you where are the MDS Centres of Excellence in Canada and in the US?

merci jean-pierre

Jump to this post

Hi Jean Pierre,
There are so many. If you Google mds-foundation.org, you will get a map showing all the Centres of Excellence in the US. For Canada you can get the MDS Index at mds-can.ca. I live in Canada, and I hear that the Sunnybrook Hospital in Toronto is very highly regarded. Hope this helps.
Anne-Marie

REPLY
1 reply
kathy115 | @kathy115 | Nov 10, 2023
In reply to @germaine9 "Hi Brenda, You need to ask your hematologist if the kind of MDS you have is..." + (show)
@germaine9

Hi Brenda,
You need to ask your hematologist if the kind of MDS you have is likely to transform into AML. You also need to ask him/her if your BMB included next generation sequencing. This is important because it tells you what gene mutations you have, and there are some new targeted treatments for specific mutations. Hypomethylating agents such as Azacitidine which they also use to treat AML can sometimes slow down the progression of MDS to AML, but you are right. The only potential cure is a transplant which is a very scary and risky thing. Does your husband really understand the emotional impact this is all having on you? When I was diagnosed in 2011, there was still a dispute even in the medical community about whether or not MDS was really even cancer. I was told it was a “blood disorder.” So, uh, why was I being referred to a hematologist at the Cancer Treatment Centre for a bone marrow biopsy? Even now I have to explain to some people in my life that I didn’t just get blood cancer last year when I got diagnosed with AML. I’ve had blood cancer for 13 years!!! Sorry. Back to you. Where are you located? There are several MDS Centres of Excellence in the US and a few in Canada. Is your hematologist a specialist in MDS? If he/she isn’t, I would suggest that you ask for a second opinion from a hematologist at the closest Centre of Excellence to you. It will be easy to find on Google. I know how difficult it is to live with all the uncertainty, and I am now attending a support group for cancer patients which I find very helpful. I would suggest that you look into that too. Take care.
Anne-Marie

Jump to this post

Anne-Marie,
My husband was diagnosed with MDS last October and same thing, was told it was a blood disorder that could develop into Leukemia. I was shocked when I read your comment and Googled it. Lo and behold it is true. Even when Jon was started on Azacyadine I didn’t know he had cancer. He will be starting Round 5 in a week and so far it is not working. His Hemoglobin count hovers around 8.3 and his Platelets around 27. His WBC is also low and as soon as he finishes an antibiotic, another UTI comes back. So he is receiving transfusions about every 2 weeks. His doctor has said he is not a good candidate for a BMT because of his age, 74, and other health problems. I follow these conversations and will be anxious to hear how you are doing.
Kathy T

REPLY
germaine9 | @germaine9 | Nov 10, 2023

Hi Kathy,
I am very sorry to hear about your husband. It sounds like he is now high-risk MDS or even AML. When did he have his last BMB? As for me, I feel pretty good, my hemoglobin is now normal, and I have not required a transfusion for four months. During that time I was put off treatment because of a serious bacterial infection. Strangely enough, my blood counts went up rather than down after I was withdrawn from treatment. They’re still not great though - .80 neutrophils and 94 platelets. I get my blood work done once a week now, and I see my hematologist again on November 22. I’m feeling pretty stressed about being off treatment for so long, but as long as my blood counts stay stable or get better, I’m just going to ride it out. If/when I go back on treatment, it will be on an Azacitidine/Venetoclax combo. As far as I know Venetoclax is approved for CLL and AML but not MDS. I am shocked that your husband’s doctor is still calling MDS a “blood disorder” and not a type of blood cancer which it really is. Sounds like you need to find another doctor who knows more about MDS. Hope this helps.
Anne-Marie

REPLY
hlmcneely | @hlmcneely | Nov 10, 2023
In reply to @germaine9 "Hi Brenda, I was very interested in your comments about your husband’s response to your MDS...." + (show)
@germaine9

Hi Brenda,
I was very interested in your comments about your husband’s response to your MDS. Unfortunately I got pretty much the same response from my husband (who I since divorced and remarried) and my four “best friends” who just didn’t get it either. Most people don’t even know what MDS is, but everybody knows what Leukemia is!!! I had a great GP who figured out why I was so tired all the time, did extensive bloodwork, and referred me to a good hematologist who recommended that I watch and wait and get my bloodwork done every four months. In the beginning I wanted to know everything about MDS, and I was compliant about getting my bloodwork done. However, after a few years of no symptoms except for some fatigue, I got sloppy about my bloodwork. I still went, but sometimes I stretched it out to six or seven months. I just didn’t want to know!!! It was always in the back of my mind, but I really went into denial for quite a few years. So now I have AML, a slightly more compassionate husband, my daughter, and new real friends - not just fair weather ones. I still have the same GP and a new much better hematologist. Watch and wait is a good strategy in the beginning because treatment too early can cause more harm than good, but it is very important to keep all your bloodwork appointments. It is also important to know which kind of MDS you have because only about 30% transform into AML, and you don’t want to belong to that club!!! Also, it’s really important to know what, if any, cytogenetic abnormalities and DNA mutations you have. I know it’s hard, but just try to take it one day at a time.
Anne-Marie

Jump to this post

Anne - Marie
I was reading the post and you made 2 remarks and I wonder if you can explain.

1 - know what know of MDS you have and
2 - find a hematologist/oncologist who knows MDS

how or what is the answer to those questions.

thank you

hollie

REPLY
germaine9 | @germaine9 | Nov 10, 2023

Hi Hollie,
There are several different types of MDS that indicate whether you are low or high risk. Your doctor should be able to tell you which kind you have based on your BMB and Cytogenetics results. Low risk patients are usually put on watch and wait whereas higher risk patients get a hypomethalating agent such as Azacitidine or a bone marrow transplant if they are young and fit enough. Of course, given time, low risk can evolve into high risk which is what happened to me.
The hematologists who know the most about MDS are the ones who work in the MDS Centres of Excellence which are mostly located in large cities.
Anne-Marie

REPLY
jrwilli1 | @jrwilli1 | Nov 10, 2023

My husband had low white counts since 2017 and we had no idea about MGUS and kinda glad we didn’t but he was watched closely by a hematologist. He was always very tired but continued to work out and work full time. He also had a lot of back pain but he also has significant scoliosis and degenerative disc disease and Parkinson’s. So he just but it off to getting older. Not until his white count dropped to 2.4 did we get bone marrow biopsy and at first where told non hogkins lymphoma but this hematologist didn’t feel his symptoms fit that and sent for second opinion through Mayo and yep MDS with 19% blast. Saw a oncologist on a tues in Aug 2022 and by Thurs we where getting heavy duty chemo since at 20% blast that would be AML. Well he was 68 yrs then and had planned to work til 70. Nope the chemo set him back a lot and because of that they said he wouldn’t be a candidate for a transplant. Well you don’t tell this workout guru so with PT and time he was strong enough for a transplant and had that in Feb of this year. I won’t say it has been a easy road but he got a second chance and right now the MDS has been in remission for awhile now. We have had a few admissions to hosp for infections but was able to do a lot of the chemo and transplant as an outpatient. We are fortunate that we live close to a MDS clinic and have great oncologist. Hopefully this Xmas we will be able to see the grandkids that live four hours away. So this year has been worth all the hurdles. He will be 70 next month. Be your own advocate.

REPLY
momz | @momz | Nov 10, 2023
In reply to @germaine9 "No, next generation sequencing is a relatively new test. If your doctor didn’t request it when..." + (show)
@germaine9

No, next generation sequencing is a relatively new test. If your doctor didn’t request it when he/she did your BMB, it wouldn’t have been done. Do you know what your IPSS-R score is? That will tell you whether you are high or low risk for developing AML.
Anne-Marie

Jump to this post

Anne-Marie,
I do not know my IPSS-R
Score is or even what that means? I will definitely be asking for more information and explanations next Dr. visit. Much appreciation for sharing your knowledge.
😊Brenda

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.