Dad diagnosed with MDS (RAEB-1); no treatment as of now

[S001]

Hello,

My dad was diagnosed with MDS (RAEB-1) a month ago (ie, May '2010) and the cytogenetic report showed a 5q and 7q deletion. All this started in April, when my dad started feeling fatigued, had cough and shortness of breath and a loss of appetite.

After testing, it was confirmed in May that my dad had MDS, with blast cells of 2%. However, by that time, he was running a high fever (infection of unknown origin causing it) and was injected with erythropoeitin for 3 weeks, while being treated for the infection.

After 3 weeks, once the infection and fever were gone, he underwent another bone marrow biopsy (a month after the first BMB). The blast cells were 4% and after the doc saw the latest blood report, (showing a Hb of 9.4 and platelet count of 43K), she recommended not trying any treatment for the time being.

The doc said that seeing my dad's improving condition and a Hb count of 9.4, she suggested that maybe my dad had this condition for 5-7 years, but it wasn't detected and only the cough and shortness of breath in April, brought this to light. The doc said maybe the condition may just go down again and stay as is for years.

She asked my dad to get a blood test done only after 15 days, saying pricking him for blood tests should be avoided as much as possible. She suggested my dad take 6 weeks for rest and if the blood tests reveal a stable Hb, then he may join work after a month.

Right now, there is a week left for the blood test, and my dad is fine, with no problem other than weakness and a lack of appetite. He eats little and says he feels 'uneasy' with heavy arms and legs right after eating. Throughout the 2 months, he was transfused with blood around 8 times and the last transfusion he had was some 15 days ago.

The lowest his platelet count ever went down to was 23K and the last report (of June 10th) showed a platelet count of 43K (Hb 9.4).

We are scared about what the blood test a week later will show, and I was wondering if anybody else has had a similar experience. Is it too much to hope for a good blood report? And maybe go without any treatment as well?

I'm hoping and praying for the best though.

[bebop]

is your dad seeing a hemotologist/oncologist at this point? how old is your dad? it seems a few of us are here for our parents.

[S001]

My dad is 59 years old. And yes, the doc dealing with us is the head oncologist. Initially she had suggested chemotherapy and a BMT, but after seeing my dad for 15 days, she said he seemed to look better and his reports weren't bad either. So she suggested we should wait and see if the counts remain stable without any drugs.

Living on hope right now. And yeah, quite a few here for parents.

[Chirley]

Hi, I was just wondering why your Dad is RAEB when his bone marrow blast count is 4%. This would make a big difference in his treatment options.

[S001]

I know, I asked the doc the same and he'd told that it's because of the cytogenetic abnormality of 5q and 7q and that's why my father has been given an IPSS score of Intermediate-1 (and the RAEB).

The thing is complicated, and varies from person to person, but is it uncommon for people with MDS (RAEB-1) to be transfusion free for 20 days or so (and no other meds during this time)? My dad had his last blood transfusion on 31st May and the 9th June report showed a Hb count of 9.4 and platelets 43K. Just wondering if this is a good sign.

[Birgitta-A]

Hi S001,
You know when your dad's platelets can be as low as 23 he has to be very careful and try to avoid everything that eventually could decrease the platelets . Here is a "warning list": http://www.pdsa.org/about-itp/warnings.html

I got the original article about cows milk and only adults with colitis and infants with cow milk allegy got low platelets after drinking cow's milk.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Neupogen 2 injections/week for low white blood cells, Desferal and Exjade for iron overload, asymptomatic

[bebop]

how often are they doing his cbc? My dad went from intermediate 1 to high risk in 2 weeks. from time of bmb til 2 weeks later when we got the results. I would highly suggest getting them done at least every 2 weeks until you know his numbers are stable. Good luck with it all hon.

[S001]

Thanks a lot Birgitta-A! That list is very useful, will keep a check with it.

[S001]

Originally Posted by bebop

how often are they doing his cbc? My dad went from intermediate 1 to high risk in 2 weeks. from time of bmb til 2 weeks later when we got the results. I would highly suggest getting them done at least every 2 weeks until you know his numbers are stable. Good luck with it all hon.

While my dad was at the hospital, he was being checked every day. Today is the 10th day, since his last CBC test. This is the longest it has been since a blood test, and we'r planning to get a CBC done in a day or two. Real nervous about seeing the latest results too.

[DianeD]

Hope is one of the most important things that you can carry with you on this journey. The platelet increase sounds very hopeful. My husband's Hg climbed back up to normal and was there for months with him taking no medications.

[S001]

Originally Posted by DianeD

Hope is one of the most important things that you can carry with you on this journey. The platelet increase sounds very hopeful. My husband's Hg climbed back up to normal and was there for months with him taking no medications.

Yeah, it sure does give hope reading up here. It's great to talk to others in such a forum too. And I hope your husband is doing great too.

[S001]

My dad's latest CBC showed a platelet count of 160,000, which increased to 180,000 within a week. The WBC are in normal range. The Hb however were 7.4, so my dad my transfused with blood (which did not have any platelets) and then the Hb rose to 9.5.

The docs asked my dad to return for a CBC after 3 weeks. So we should be getting it checked within a week now. I hope the platelets and WBC levels remain stable, with better Hb counts.

[bebop]

wow that is a huge increase in plts! wtg! I hope all continues to go well!

[S001]

Originally Posted by bebop

wow that is a huge increase in plts! wtg! I hope all continues to go well!

I know..I'm hoping for the same.

[Lisa Z]

sounds like your Dad is doing good. Hopefully his counts will stay up. NOne of us are doctors, but sounds like a BMT would be a big jump of the gun at this point.

[S001]

Originally Posted by Lisa Z

sounds like your Dad is doing good. Hopefully his counts will stay up. NOne of us are doctors, but sounds like a BMT would be a big jump of the gun at this point.

I know, the doctors who'd proposed a BMT now say it isnt required at this stage, after seeing dad's condition improve.

[S001]

Thought I'd update with dad's condition. Blood tests since past 1.5 months have been consistently showing normal platelet and WBC counts (the latest CBC a week ago, showed platelets of 225K and WBC of 14.3).

The Hb counts however, keep dipping and dad needs a blood transfusion every 15 days. The last Hb count was 6.4 and he'd had a blood transfusion some 22 days before that.

Same goes for the blast cells. Over the course of 3-3.5 months, his blast counts have moved from 2% (at diagnosis) to 7% to 13%, back to 1% and the latest showing 24%. The docs have recommended supportive care as of now, saying dad's platelet counts and WBC's are absolutely fine. So a blood test after another week is on the cards.

We'r worried about the blast cells for sure. But seeing dad, he looks healthy and fine, doesnt stay tired or short of breath or anything like that. Has recently joined work again, because we figured it's important to stay occupied and get on with normal life, as much as is possible.

As always, praying for healing!

[Lisa Z]

Wow. How often is he getting BMB to determine blasts?

[S001]

Originally Posted by Lisa Z

Wow. How often is he getting BMB to determine blasts?

Oh not a BMB, only blood tests regularly. He's had 2 bone marrow biopsies and the first one diagnosed the problem with 2% blasts. The second one after 3-4 weeks showed mostly the same reading.

We just had a CBC done yesterday, and the blasts in the blood are down to 1%. The doctors believe the situation is just the same, like it was 3 months ago at diagnosis. So another CBC next week and we'll have a better idea if dad's Hb is dipping or not (yesterday it was 7.7). Platelets and WBC's are normal.

For the time being, doctors are suggesting Erythropoietin injections for 6-8 weeks. Lets see what we decide then.

[Birgitta-A]

Hi S001,
Good that the platelets are so high !

You know a normal WBC count is about 4.5 to 10.0. Often the reference value is written at the report from the lab. This means that 14.3 is a little high. Then I don't understand how the blasts in perifer blood can be as high as 24%. Good that they now are down to 1%.

Have you asked what EPO value your husband had initially? You know our kidneys make EPO and when the HGB is low the kidneys try to increase EPO. Some patients - like me - have a very high EPO value at dx. If is is more than 500 - I hade more than 800 - EPO drugs hardly ever have any effect, so I was never treated with an EPO drug.
Kind regards
Birgitta-A

[S001]

Originally Posted by Birgitta-A

Hi S001,
Good that the platelets are so high !

You know a normal WBC count is about 4.5 to 10.0. Often the reference value is written at the report from the lab. This means that 14.3 is a little high. Then I don't understand how the blasts in perifer blood can be as high as 24%. Good that they now are down to 1%.

Have you asked what EPO value your husband had initially? You know our kidneys make EPO and when the HGB is low the kidneys try to increase EPO. Some patients - like me - have a very high EPO value at dx. If is is more than 500 - I hade more than 800 - EPO drugs hardly ever have any effect, so I was never treated with an EPO drug.
Kind regards
Birgitta-A

Yes, the higher than normal WBC count and the 24% blasts confused the doctors too. The 1% reading was a relief alright.

Dad had another CBC today and the Hb level was down to 6.1 (been 3 weeks since the last transfusion). Platelets and WBC are fine. Thank you so much for explaining the EPO mechanism. It helps with so much information to sort through. Will do as you suggested.