New, Scared, Questions

[Bryan Krisher]

Hi my name is Bryan and I was recently, 2 weeks ago, diagnosis with MDS.
I’m 54 years old and was a pretty healthy and active person up until March of this year.
I’m told I have the “milder” version of MDS.

I do understand that a lot of the questions I might have on here I should be asking my own doctor.
But I’m new here and newly diagnosed and I don’t meet with my doctor again until 2 weeks from now so I wanted to ask for opinions or replies from people in a similar situation.
My doctor has explained a lot but usually I’m so out of it I really don’t hear and comprehend it all.
I am glad I found this board because I felt so alone.

My story so far…

For me, I guess it all started back in March 2018.
I woke up one morning and had a severe case of …sorry …bloody diarrhea.
From there it just escalated …extreme fatigue, fuzzy feelings, shortness of breath.
Since then I have had 5 different hospital stays at least 5 colonoscopies on 4 of those visits.
We have the GI bleeding under control but it’s give and take because sometimes when my platelet levels are low the GI bleeding returns.
I was initially diagnosed with ITP and I may still have a form of that.
I had a BMB and early results showed everything negative but the last result, that I waited weeks for, is where the MDS showed up.

Besides the MDS here is where I stand now, as I know it….

I’ve been told my immune system is attacking my platelets.
My platelets levels are low …in the 50,000 and lower area.
I’ve been as low as 6,000 and I’ve been to an one time high of 121,000.
My hemoglobin level hovers between 7 and 9 depending on the platelet level.
Everything else is at pretty much normal levels.
But like I said sometimes when the platelets are low the GI bleeding returns.
When it does my hemoglobin level drops because of the blood loss.

I’ve had steroids, IV-IG treatments and the rituximab treatment.
3 weeks ago was the final (4th) ritux treatment.
The 121,000 I hit was a time that I was given IV-IG and platelets on the same day.
We were able to replicate the treatment a few weeks later but the results were lower than the 121 …darn!
Platelets are still falling.
Currently, I go to labs 3 times a week for blood testing.
Usually I need one pint of blood and one of platelets each week.
Sometimes I have a good week and only need one or the other.
Platelet levels go up but then come back down.
Platelets jump down on the average about 10,000 a day, sometimes more, sometimes less.
I usually get a platelet trans when they get below 20,000 especially on weekends when there’s two days in between labs.
I finally got a picc line installed after my arms all turned purple from numerous failed IV’s.
They’re finally weaning me off the steroids which IMO were doing more harm at this point than good.
My doctor wants to skip the chemo treatments and move right into a BMT but I have my reservations.

How I feel now…
I can’t work or really do anything that’s physical.
I can make it through a grocery store but that’s about it and that’s with me pushing the cart for stability.
When I stand up I have to pause a minute or two after doing so just so everything can equalize, or become unfuzzy.
My feet and ankles sometimes swell or hurt to walk on.
I have to use a cane when I do walk.
I can still drive but prefer not to for safety reasons.
I have cloudy vision and short periods of shortness of breath.
I have never fainted or passed out but I’ve come REALLY close with some hazy/fuzzy moments …lots of them.
Temperature fluctuates between 97.8 and 99.1, oxygen hovers in the 96 – 97 area, blood pressure fluctuates but is in the normal area.

I do understand that there are different types, or levels, of MDS.
Does my symptoms sound like the “mild” version?
Is any one here having the same symptoms as me or suffering from just low platelet counts?
Are there some treatments I haven’t tried yet?
I have been doing some research and heard of some treatments called Nplate and Promacta but these were mainly for ITP, when I thought all I had was ITP.
I mentioned them to my doctor but he kind of blew them off.

If you have any questions, and I’m sure you do, I’ll do my best to answer them.

You can bet after reading a lot of the posts here and viewing a lot of the information on this website I will have a few hundred “new” questions for my doctor.

I’m sorry if I rambled on and jumped around on topics here but this is all new to me and my mind is racing at a million mph with thoughts of …wtf happened??? …why me …will I die from this…my future life, will I ever be back to my normal self …my wife …just everything.

Any help with any of this would certainly be appreciated
I’m not afraid to admit ….I’m really scared!

[Philip Fallacaro]

I’m assuming you have had a bone marrow biopsy in which many lab tests are done and can gice you and your doctor a good idea of the specific type of MDS you may have and a classification score number revealing the level of probability of your MDS progressing to AML(leukemia). If you have not had a bone marrow biopsy and are not seeing an oncology hematologist, specializing in MDS, you may not have a definitive diagnosis. It’s possible your illness is just your ITP, which is not curable, but can come and go periodically. Your sudden deficient platelete count swings, causing severe bleeding and probable low hemoglobin, appears to point more toward an ITP condition rather than MDS which usually only slowly manifests itself from gradually diminishing red, white and platelete counts over a course of many months and sometimes years before cetrain symptoms begin to alert a doctor to test for MDS. My suggestion is to get a second Dr.opinion from a hematologist who is very familiar with MDS. The MDS foundation may be able to help you find such a doctor in your area if you contact them and inquire.
You have an advantage of being relatively young and were reasonably healthy before these recent bleeding epesodes, happenning only a few months ago. You will have more treatment options to consider than a much older person and be in a better condition to combat whatever your specific illness turns out to be.
Ask questions and read up on MDS and ITP. Be informed from your own research. And be certain about your diagnosis before agreeing to any serious treatments, like chemotherapy drugs and the like.
I can understand you being worried and confused since you really don’t know for sure what you have and where your condition—-whatever it turns out to be—is heading.
Once you are sure of what your illness is and the nature of its progression or remission, you will have to learn to accept it and do all you can to help yourself get better and stay alive.
Hope things go well for you by getting a conclusive diagnosis and the proper treatments to correct your illness.
Phil Fallacaro email: philafal@aol.com

[Sherry Pratt]

Bryan,
On my our second BMT you said they said you have MDS. There are several sub-types of MDS with all having different treatment protocols and outcomes. I.e. my particular MDS diagnosis was RARS-Refractory Anemia with Ringed Sideroblasts. Your doctor should tell you what subvtupe you have. Are you treating at a center of excellence in blood cancers? A second is always the best in MDS. In my experience, by what you have described, this is not mild MDS. Sherry(pratt8075@aol.com)

[Greg Coleman]

I too was 54 when I was diagnosed with MDS. I have MDS/MPN overlap, so I know my case is different to yours, but I will share my experience to maybe relieve some of your fears. As we speak, I am in the hospital recovering from my BMT. I received my cells on Tuesday. I haven’t been sick at all through the process, no hair loss or anything. I dare say, aside from boredom, it has been easy. I am on day +5 and they warn me I may still get ide effects. One moment at a time.

I was diagnosed June 2017 after being tired more than usual and bruising easily and the bruises lasting for weeks. Within 2 weeks I was started on Decitabine. My spleen was swollen and tender. My counts got as low as Platelets 2,000 and Hemoglobin 2.3. I was hospitalized three separate times for infections for a total of 91 days in the hospital. it was decided my spleen should come out and on December 4th my spleen was removed. Immediately, everything got better. My counts rose, I began to regain strength and put on weight ( I lost 100 lbs.). From December to present, I regained those 100lbs and became healthy enough for the BMT.

I agree with the other posters, get a second opinion and get it from a center of excellence. I am with Dana-Farber in Boston. It is terrible to get here (2+ hours each way) but worth the trip. Don’t fear this. Respect it. It is curable. Get the best you can get for this. There are no “dumb” questions or too many questions. All the best in your battle! Anytime you need a fellow traveler, hit me up. gcoleman1363@gmail.com

[Bryan Krisher]

Phillip,
Thanks so much for replying.
I’m sorry I took so long to reply back.
Yes, I had a BMB (biopsy) and early results did not show anything cancerous but we had to wait like 6 weeks for a final test and that is where my Dr. saw the so-called “mild” form of MDS.
My question to my dr will be …if it’s so “mild” why are we rushing into the “aggressive” treatments?
Yes, I am working with an Oncologist through Presbyterian MD Anderson Cancer Center.
I’m not sure if he is well versed in MDS.
He keeps telling me it doesn’t make sense and that him and other dr’s and even the pathologists are confused why I even have this. I don’t do anything that would have caused or brought it on.
Yes, I do know it can also show up random and out of the blue.
But then again, from what I’ve researched …nothing really makes sense about MDS or ITP.
I’ll post again after I go to the actual dr’s appointment.
I don’t see him at labs.
btw… had lab today
plate …29
hemo …8.1
So probably platelets and blood on Wednesday.
Are there other “important” numbers I should be looking at?
I mean I know they’re all are important, but you know.

Thanks for taking time to reach out!

[Bryan Krisher]

Hi Sherry,

Thanks for replying!
I’m also sorry to you to for taking so long in replying.

I haven’t had the BMT …yet.
Just a BMB or biopsy.
Early results of the biopsy showed no cancerous results.
It wasn’t until the very last result, which we waited for more than 6 weeks for, that the NDS showed up.
Dr keeps saying it’s a mild version, but on the hand he wants to jump to the aggressive treatment …go figure.
I understand that there many versions of MDS and, trust me, I’ll be finding out which type on my next visit with him on the 14th.

Good center? …I believe it’s a good center …Presbyterian MD Anderson.
Although they don’t do BMT’s here in NM.
I’ve been told that will either have to go to Colorado, Arizona or Texas to have that done.

Thanks for your advise!

[Ellen Jenner]

my name is Ellen. I was diagnosed last year DEC. I just turned 57. I have what they are calling Low grade primary MDS. On my reports it says MDS-RS-MLD It is only affecting my red blood cells so far. Hemoglobin is usually around 8.7. I have had only one transfusion that was in Dec. I get blood work and shots of Aranesp every 2 weeks.

[Allan Romriell]

Brian,
What you describe does not sound mild to me either. I have low risk and in over 1 year have only had blood work every 3 months and my numbers are fairly steady, hemoglobin in the 11’s platelets have leveled off in the 130’s white count mostly normal. I hope they get you some answers at your next appt. and can get you stabilized. Wishing you the best.
A.

[Kathy Lynch]

Hi Ellen, While I am new to MDS, I agree your MDS does not sound like it is low grade. I would defiantly get a second opinion. Have your RBC numbers improved at all with treatment.

Big hugs and all the best

[Kathy Lynch]

Just a note…. MDS is not curable without a Bone Marrow Transplant. Those of us who do not meet the Bone Marrow Transplant requirements…and there are many… have what is called treatable MDS and can live MANY years with it. It is important to get a second opinion from a doctor or medical center who has good knowledge of MDS. If your second opinion is still confusing do not hesitate to get a third. You can have your records sent to MD Andersen in Houston and they will do a review. Keep on fighting!

[Norma DeLong]

Here is my opinion, for what it’s worth. I will be 3 years post BMT 12/15/18. Do not go to MD Anderson in Arizona for a BMT. My insurance wanted me to go there. I had my induction therapy there before the transplant. My neighbor is a doctor and helped me navigate the insurance system. My insurance contracted with the Mayo Clinic in Phoenix for the transplant. Their care is top notch. Insurance kicked me back to MD Anderson/Banner for follow-up. They are supposed to be second in the state for BMTs. Hard to believe.

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