Treatment Decision-Making through the Spectrum of MDS

MDS (myelodysplastic syndromes) is a heterogeneous group of malignant hematopoietic stem cell disorders that are characterized by dysplastic and ineffective blood cell production with a variable risk of transformation to acute leukemia. Explaining MDS to patients and their families can be difficult for healthcare professionals (HCPs). The disease process is complex, the prognosis variable, and treatment options must be tailored for each individual patient.
Often the information gap between what HCPs believe they are communicating to their patients and what patients comprehend can be immense. Thus it is imperative that patient-HCP communications are effective to ensure optimal outcomes when managing patients with MDS.

[@clivewinters7479]

What a wonderful man, so dedicated and comforting for his patients.

[@pammcreynolds]

Gosh, you've learned a lot since I started the watch and wait many years ago. I revisit every so often to learn what is new. My platelets have been low for more than two decades. About 8 years ago I began having low white cells. They recover, then go low again. I have a graph I've done with all my counts over these years and I see a constant decline, or progression. Thank you for sharing this. It really helps me to have a clearer picture.

[@AAMDSIF]

So happy to provide information like this. You are why we do what we do!

[@UuU1001.]

Hi Pam, would you mind telling me how low your platelets ranged decades ago and wbcs? I am a nervous wreck because mine is low. I can’t eat or sleep.

[@mypinkelephantlife3618]

@@UuU1001. I so understand how you are feeling. I was a nervous wreck too. Then my husband came down with dementia and I shifted my focus off of me and onto him. I quit thinking about what was going on with me until this pandemic thing and then I kind of felt I should refocus on myself a little more. I had kind of started a few months before the pandemic in taking better care of me, but the pandemic set me researching again. The lowest my platelets have been is 82,000, they have lingered in the 110,000 t0 120,00 most of the time. Something odd is has happened with them in the last couple of years. In five reading I had low normal with only two in the 130,000 range. I don't know what's up with that. My lowest WBC was a 2.9, but they too have suddenly gone into normal ranges with only two below normal, but barely. Areas I have focused my attention on in order to take care of me: - Avoid sick people, which I have done since they first found my WBC count was low. - Wear a mask during flu season if I am out and about, even before the pandemic. People would see me and avoid me. It was kind of funny. I've not had flu shots and have not had the flu either. - Rest if I'm tired and don't worry about not getting things done. - I lost 50 pounds and feel so much better all the way around. - Eating even healthier than I already did, adding more fish, and cutting lots of sugar. - Improved sleep hygiene. Going to bed at a reasonable hour, not watching TV or doing computer or phone screen activities before bed, getting plenty of exercise, etc. I also moved to another bedroom to avoid being awakened by my husband's snoring. I am now getting at least 7 hours sleep a night as opposed to 4-6 hours, and in all the stages according to my FitBit. - Gave up Diet Coke and drink only water (9.5 glasses a day). - Walk three miles or more a day, sometimes running if I want to. - I wake and spend an hour or two in devotional time just praising God and thinking about all the things I have to be thankful for. And talking about things or circumstances that are taking place and are out of my control. - Let go of a lot of emotional baggage and toxic people. I am not on Facebook anymore either. - I try to focus on the positives and look for the good things around me each day. - Do things I enjoy like walk, sit on swing and watch birds, take a hike or go fishing, write, paint, etc. III IIfromI

[@UuU1001.]

@@mypinkelephantlife3618 I’m very sorry to hear all of the hardships that you have been and are facing. The nervousness and anxiety is definitely a whole disease in and of itself. Definitely trying to only focus on what I can control myself. But sometimes reveling in the nervousness and asking around for others experiences definitely help me at times (though I don’t know if that is a psychologically sound technique). I’m sorry if I’m being a bit intrusive but did you get an official diagnosis? Or are you kind of in the wait and see if this truly might be something serious phase by a pcp or hema? I’ve been having low platelets and wbcs for couple years and am being monitored by a hema. Thank you for such a reassuring response. It just really sucks that I am a bit younger (below 50) and dealing with this, not that it is good at any age.

[@mypinkelephantlife3618]

@@UuU1001. I have a hematologist/oncologist. I've had mutations that keep them watching. They have it as a differential diagnosis. I'm one of those odd ones I suppose. I've been seeing hematologist/oncologists the whole time, even when it was just platelets. I was told by the hema in St. louis I should be followed my whole life as it could be the early signs of something to come. It was ten years ago my current hematologist came to believe it could be MDS. So, once again I went into the panic mode. You are doing good to ask questions and learn. You are young. I was 52 when the wait and watch started. I'm 61 now.

[@joescarpaci]

My primary care physician had assumed that I was getting blood tests --nothing special- for five years during my annual physical (it was standard fare covered by Anthem). Lo and behold, it was never followed up on and I never got the bloodwork. The doc had a lot of "nurse turnover" My MDS could have been caught 4 years sooner. So upset and there is no reprisal in the medical-care network lest you fool yourself into thinking so. The primary care doc also missed out non-lab work symptoms: the "whooshing sound" or "headbanging sound" in my head; hearing the heartbeat. And, I thought my nap frequency was the result of turning of 65. All these were clues the level of oxygenation was not normal. I was getting some bruising under my arms on my triceps from doing a yoga posture/asana called "crow" (bakasana). Also not normal.

[@AAMDSIF]

Thank you for sharing your story, Joseph. Please let us know if you need any help in finding a qualified hematologist/oncologist by sending an email to [e-mail].