My Journey has just begun

[Rusty]

Hello everyone,
I'm glad I found this forum, but no so glad I've joined the long list of people suffering with a bone marrow condition.
I went to the doctor after months of back pain in the thoracic region and feeling a bit run down. I've have ankylosing spondylitis for ~30 years, and thought this was the reason for the back pain.
The doc sent me for a routine blood test about a month ago and the results came back with low reds, whites and platlets - Pancytopenia. Since then I've had another 4 blood tests with similar low results and several other tests that have resulted in the other possible causes being ruled out. I was sent for a BMB about 3 weeks ago and the pathologist report finding was RAEB-2 with 18% blasts. The haematologist gave me the news earlier this week, but said they believe it to be early AML as the is some inconsitency with the lack of displasia seen.
I am booked in to start chemo in a couple of days, but first they will do another BMB to check if blasts are now over 20% as this will confirm AML I think. From what I can gather, treatment will be the same either way.
Doctors tell me the thoracic pain (now in my ribs and sternum area) are due to this condition and not AS.
I am 54 yo male, quite healthy and fit otherwise and trying hard to stay positive though I don't really know what to expect.
Thanks for reading...
Russell

[lisa3112]

Sorry to read this rusty. From what I know from my experience if it is aml, they usually get your leukemia under control with chemo. At the same time they investigate possible stem cell donors in your family. And will most likely put you on donor list as well. In saying this iam not a doc and its just what happened with me. As you said you are young and fit so the odds are with you! Good luck, let us know how you go. Lisa

[bailie]

Rusty, welcome. Your diagnosis from what you mentioned is very similar if not exactly what my situation was at this same time in 2013. We waited over the Thanksgiving holiday for more information. My doctors immediately started me on azacitidine. It basically saved my life. I was on it for eight cycles while getting everything ready for a stem cell transplant. As hoped, my CBC results started trending toward normal and I was still feeling well (before the diagnosis I was feeling totally normal). I was walking a hilly 18 hole golf course (6.2 miles) without any problem. Since the only "cure" for MDS (RAEB-II) is a stem cell transplant (SCT) I was ready as soon as my numbers were reasonably well and I was still in good shape physically and mentally. Give great consideration if a doctor tells you to "watch and wait" with RAEB-II. It is my strong belief that having the stem cell transplant should happen when you are feeling your best.

You mentioned chemotherapy. What in particular, azacitidine (Vidaza)? You will have many questions. Be sure to ask because there are many on this forum who can help since they have been through your situation. Keep close track of all your medical results in a very organized fashion. We wish you the very best.

[Rusty]

Thanks Lisa and Bailie.
The doctors gave me three options
1. Do nothing - watch and wait
2. Start Azacitidine to put the condition on hold temporarily, or
3. Start chemo asap and look for a donor just incase the chemo doesn't put a stop to it. (I have a younger brother and sister as possibilities)

However, the last thing I want to try is SCT as this is what finished my mum off some 10 years ago when she went though the same/similar thing which eventuated into AML. I'm not sure what went wrong, but she only lasted about 10 days after the SCT and passed away at 68 after 2.5 years of battling with it.
The doctors tell me its unlikely to be hereditary, but they are checking.
I have all my tests filed and will keep this up for the journey.

[bailie]

My diagnosis was RAEB-II with 19 percent blasts and three mutations. They told me in pretty clear terms that if I didn't start the Vidaza immediately there would be a good chance I wouldn't live very long (months). I responded to the Vidaza by the second cycle. They immediately started looking for SCT donors. It is very important to do the stem cell transplant in optimum health.

I was told and read several times that there isn't a hereditary factor. Could be an environmental connection. Or maybe they don't know for sure. I have a good friend right now who has MDS and his brother also had it.