Low WBC, Low Platelets, Low RBC, Large cells - is it always Leukemia?

@asarnesejr Initially, the diagnosis of MDS can take a bit to get used to. I think in your case, the 2 different diagnosis are causing you more anxiety. I am not a Dr, but the DdX41 mutation does not seem like it could be related to a B12 issue. Unless God has immediate plans to take you, you should be around for the 5-10 yrs the first Oncologist predicted. I ran your initial CBC results through the IPSS-M calculator and attached the results. Christ can bring you peace and hope! Seek him.

thank you so much, however, my neutrophil count is .7 not 7

Yup! The scale there is different than your CBC.

Any thoughts on this scenario? last week after 11 weekly b12 injections, my wbc was 1.7, neutrophils .8 and platelets 74. my b12 level 4 days after injection was 424.

one week later (week 12) my wbc was 2.0, neutrophils 1.0 and platelets 96. my b12 level 4 days after injection was 561.

my question is both cbc's were taken 4 days after a b12 injection. week 12's b12 seems to be holding better than week 11, possibly indicating that i'm finally not depleted. could those modest increases in blood levels be the beginning of a turnaround to a severe b12 depletion or just a random fluctuation?

@asarnesejr hello friend,
From what you wrote in your posts , you indicate that you are extremely scared, this fear is not allowing you to take a deep breath, it’s draining your energy,,!!
I also have a fatal diagnosis and prognosis, without taking up time and space , by going into details of my illness, I HONESTLY MAKES MY SELF THINK ABOUT MY GRANDSONS AND IN MY HEAD , I PLAN ON WHAT I NEED TO DO IN MY LIMITED TIME ,
I have DEFINITE DIAGNOSIS AND ITS BEEN CONFIRMED MORE THAN ONCE , my POINT IS
TRY HARD TO DIRECT YOUR THOUGHTS TO OTHER THINGS, EXAMPLE: Go to church , think about and contact friends, family , take a stroll , go to park enjoy the nature , go to a craft shop and get a small art project to do , I play a free game on iPad called BINGO , INSTALL FREE VERSION, I don’t spend one penny, YOU CAN TO PLAY VERY SIMPLE ,, another free game is SOLITAIRE,, there is also Paint by numbers, I have done it many times, There cheap coloring books ,
All these things are free or cheap and help you stay distracted from driving yourself into panic,,
From what wrote , your situation is still stable and has positive potential, please don’t take offense from this
I feel your fear , thinking positive will help you , I PROMISE GOOD LUCK

@loribmt Happy weekend, Lori. I just needed to reread your encouraging words after discouraging news on David's AML progression. Both initial treatments - Vidaza and Dacogen/Venetoclax did not work for him. Most recent biopsy still showed no mutations for any targeted treatment. He is not eligible for BMT due to prostate cancer which he takes Lupron shots for every 6 mos, decreased from 8.6 to 2.2. Clinical trials mentioned but not an option at the moment. He's going to get a port as he's been needing transfusions (hemoglobin/platelets) more than before. Seems we are at a crossroads and although difficult, staying positive through it all. The good thing is overall feeling good, apart from fatigue which what naps are for, right? Again, just wanted to reach out and thank YOU for all you do to support our community. Have a wonderful weekend! Teresa

@terdor Aw, Teresa, I’m sorry to hear about David’s AML progression. Sometimes, in spite of the best effort of doctors and science, AML can prove to be a real bear! Those red blood cell infusions will give him an energy boost, along with the platelets keeping him safe…though no new hobbies like knife juggling for him, ok? ☺️

Having the port will really ease up on the arm pokes though. I remember having so many transfusions and infusions that lovely team in the infusion center became like family! Six+ years later and I still meet with some of my nurses for dinner a couple times a year. So the transfusions are not all bad and will be very helpful for David.

I know some days can be really tap the inner strength required to stay positive. But every day is so precious and remaining upbeat can make such a difference in our ability get the most enjoyment out of each moment.
Thank you for the update, Teresa. I’m here anytime you need a lifeline. ☺️

@loribmt Thank YOU for your kind words and encouragement, and for being there for us. Bless you! Teresa

After 4-months, my 2nd Hematologist finally diagnosed me with Low Grade MDS. WBC of 1.6, Neutrophils of .7, Platelets of 70 - 90, normal Hemoglobins and Red Blood count. I'm a 61 year old male in good shape otherwise.

At this point his recommendation is to watch and wait. He tells me to live my life as normal, go to football games, and even a vacation in Disney.

What are your thoughts on this diagnosis, and any prognosis? What can I expect and what time frame. Obviously, I am still in shock that this is all happening.

@asarnesejr I was diagnosed with MDs in Nov 2020. I have similar numbers. Platelets as low as 55 and high as 76. Been on wait and watch. Labs every 4 months. Yep live your life. If tired rest. That’s my biggest issue is the fatigue. I bruise easy. Takes them awhile for them to fade. Stay busy. Enjoy your family. Your work. Your hobbies. Gods blessings.