Diagnosis - Finally

[Data]

I have been being seen by a local oncologist for pancytopenia. The doc is board certified in oncology but not hematology. She told me “it looked like I had aplastic anemia”. This was after numerous blood tests, a CT scan, and MRI, and two bone marrow biopsies. She suggested I get a second opinion which I did.

I saw a doctor at the Veterans’ Hospital in Gainesville, FL. The doctor I saw also practices at the University of Florida – Gainesville (one of the centers of excellence in the US). She is board certified in hematology, oncology, and internal medicine. She is also an assistant professor at the University. She had a battery of blood tests done and a third bone marrow biopsy.

I received my report from the third bone marrow biopsy today. The UF doc was out of the office today on a family emergency so another one of the doctors delivered the report and news to me. The report confirmed I have MDS - RCMD (Refractory Cytopenia with Multilineage Dysplasia). My blood counts are not too low at this time (WBC=2.3, RBC=2.4, Platelets=38K) so this doc’s idea was to monitor my counts for a while. I am supposed to have blood work done in two weeks and see my UF doc in a month. I believe it is in my best interest to continue seeing her.

I appreciate all the answers and comments I have received on posts I have made on this forum. It has been very helpful!

Data

[Neil Cuadra]

It took almost three months to get a definitive diagnosis. That was a long time to wait.

Are you feeling positive because you now know what you have, and that it's "only RCMD", or is this a more serious diagnosis than you expected?

[Data]

Originally Posted by Neil Cuadra

It took almost three months to get a definitive diagnosis. That was a long time to wait.

Are you feeling positive because you now know what you have, and that it's "only RCMD", or is this a more serious diagnosis than you expected?

Neal,
I think I am feeling positive now because I know what is wrong. I think Aplastic Anemia would probably be the better one to have if I could choose but obviously we don't get to choose. I also feel better now because I think I have a lot more confidence in this doctor. It sounds as if it might be a while before I have to start any therapy and I like that idea. At least it gives me time to think about the therapy and choices I may have to make in the future.

Thanks!!

Data

[MissDaisy]

Do you think knowing what you have helps you fight the battle?

I'm glad you finally found out what's going on as you can now seek appropriate treatment.

[Data]

Originally Posted by MissDaisy

Do you think knowing what you have helps you fight the battle?

I'm glad you finally found out what's going on as you can now seek appropriate treatment.

Miss Daisy,
I do think knowing helps me. One of the hardest parts of these past few months has been not knowing. I am not anxious to start treatment though. The longer I can put that off the better!!

Thanks

Data

[bailie]

Be careful about "putting off treatment". I am seeing too many who did not receive early treatment and they are struggling.

[maggiemag]

Data, I tend to agree with Bailie on this, sorry! Plus I suspect that the replacement doc said to monitor counts for a while b/c they didn't want to make the decision on which treatment, leaving that for your doctor away on an emergency. Doctors don't want to step on each other's toes. Additionally, I think the trend today leans toward treating earlier. Just my opinion!
Mags

[Data]

Originally Posted by maggiemag

Data, I tend to agree with Bailie on this, sorry! Plus I suspect that the replacement doc said to monitor counts for a while b/c they didn't want to make the decision on which treatment, leaving that for your doctor away on an emergency. Doctors don't want to step on each other's toes. Additionally, I think the trend today leans toward treating earlier. Just my opinion!
Mags

Maggiemag and Bailie,
I appreciate both of your opinions and comments. I really wish I had seen my regular doc. I have a lot more confidence in her. I obviously don't know much about this but I am learning as much as I can. I think my wife would definitely agree with you on treating early. I am not sure what they would treat right now though. I don't think either my RBCs or WBCs are low enough to treat at this time. From what I have read they don't typically give blood this early for fear of "sensitizing" the patient to foreign blood. I would be curious to know if anyone else has been in my situation (as far as blood counts and risk category) and what they did.

Thanks again!!

Data

[bailie]

Data, your blood counts are low. Check out my blood counts and I had a stem cell transplant not much later. Earlier rather than later can easily determine success or failure.

[Data]

Originally Posted by bailie

Data, your blood counts are low. Check out my blood counts and I had a stem cell transplant not much later. Earlier rather than later can easily determine success or failure.

Bailie,
I was surprised at your blood counts and the fact you got a stem cell transplant. From what I have read and been told I always thought I was too old (64). Were you ever receiving blood (either for hemoglobin or platelets)?

Thanks and best wishes!!!!!


Data

[Birgitta-A]

Hi Data!
As far as I understand you have low risk MDS - the blast cells in the bone marrow are less than 5%.

If so you should not have a STC now. In Europe you should not get Vidaza or Dacogen - these drugs are only for high risk patients here.

You should try EPO drugs for low HGB if you own EPO is less than 500. You WBC are low - look out for infections! Your platelets are low too - look out for everything that can decrease platelets like pain killers

Good luck!
Kind regards
Birgitta-A
75 yo dx RCMD 2006 with HBG 7.0 and severe bone marrow fibrosis 2006. Supportive treatment with txs, iron chelation and Neupogen injections for low WBC until 2010. Thalidomide 2010 with positive result and Revlimid since 2013 with good result until Sept 2014. Now tx dependent.

[bailie]

Data, my situation was that all three counts (WBC,RBC and platelets) were low and then they continued moving lower at a quick rate. I (we) were proactive and ready to act when they moved. In a two month period my counts went down to WBC @ 1.7, RBC @ 2.67 and platelets @ 24. I was told by two highly respected hematoligists that I would most likely not live more than seven months without treatment. It was Vidaza that extended my life. My counts came up to an optimum level to make the SCT possible. I went into the SCT in relatively very good health and so far (knock on wood) that seems to have made a real difference. I firmly believe that it is important to stay ahead of the curve rather than behind the curve.

I never had transfusions or anything except Vidaza (and the last three months the combination with Revlimid) prior to the SCT.

[Hopeful]

Hi Data,

What are your reticulocyte count, ARC, and ALC?
Have you had your ferritin, B12, folate, and PNH tested?
What lead the 2nd doctor to a diagnosis of MDS-RCMD?
Is your marrow still hypo-cellular?

The distinction between AA and MDS is very difficult in a hypo-cellular marrow in the absence of blasts or cytogenetic abnormalities. Hypo-cellular MDS can be caused by an immune response (like AA) and can respond to ATG/CyA. Most other MDS subtypes are treated with hypomethylating agents. Both are very potent medications with the potential for serious side effects. So, it would be prudent to wait to see how your pancytopenia behaves before trying one or the other. Some people maintain stable counts for years with no treatments.

If you are not transfusion dependent, I don't think many doctors would move to treat you rapidly. One reason is that your current blood counts, although low, are equivalent to some partial-responders after treatment!

If it is believed that your MDS is secondary to your prostrate treatment, then you may have to go the transplant route. However, I still don't think doctors would jump on doing this now while you are "stable".

I just saw an excellent presentation by Dr Gail Roboz on the latest thoughts about MDS, treatments, transfusions, etc. I think you and your wife should check it out, as she is an amazing speaker and really lays out the facts in a clear and digestible manner. There are two parts to her presentation, from the Philadelphia Live Stream:

https://live.blueskybroadcast.com/bs...=1418&CAT=8549

[Birgitta-A]

Very interesting presentations Hopeful!
Kind regards
Birgitta-A

[bailie]

Hopeful, your link is excellent. Thank you. I would think that would be recommended viewing for anyone diagnosed with MDS.

[Data]

To all who have posted on this thread,
Thanks you all so much for your comments and opinions. I am an engineer by trade and used to fixing things (mainly networks) by configuring a router or switch of if that failed replacing a component of the network. This is strange and scary territory for me to be in when it seems as if there is no exact discernible cause and much worse no definite course of action to take.

I do agree that the link Hopeful provided was very informative and should be "mandatory reading". Very informative!!

Thanks!!

Data

[maggiemag]

Data, I tend to agree with Bailie on this, sorry! Plus I suspect that the replacement doc said to monitor counts for a while b/c they didn't want to make the decision on which treatment, leaving that for your doctor away on an emergency. Doctors don't want to step on each other's toes. Additionally, I think the trend today leans toward treating earlier. Just my opinion!
Mags

[Data]

Originally Posted by maggiemag

Data, I tend to agree with Bailie on this, sorry! Plus I suspect that the replacement doc said to monitor counts for a while b/c they didn't want to make the decision on which treatment, leaving that for your doctor away on an emergency. Doctors don't want to step on each other's toes. Additionally, I think the trend today leans toward treating earlier. Just my opinion!
Mags

Maggiemag,
You may very well be correct. I can understand another doc not wanting to start something. I have an appointment with my regular doc on the 2nd of Dec. She also scheduled labs twice before I see her.

Cheers

Data

[maggiemag]

Yikes, I thought I had deleted this! I had previously posted this, and somehow while having some computer issues, it got reposted! I saw it come up again, and did an edit, or so I thought, and yet here it is! Sorry, Data, it was an accident; it's not like I didn't think you heard me the first time, I know you did!

[Data]

Originally Posted by maggiemag

Yikes, I thought I had deleted this! I had previously posted this, and somehow while having some computer issues, it got reposted! I saw it come up again, and did an edit, or so I thought, and yet here it is! Sorry, Data, it was an accident; it's not like I didn't think you heard me the first time, I know you did!

Maggiemag,
This is funny!!! I didn't even notice you had mentioned that before. Maybe the MDS has gone to my brain. Ha Ha. My wife and I are getting ready to go to Miami tomorrow for the AA&MDS conference.

Have a great day!!!

Data