Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu Jul 6, 2017, 05:31 PM
bobspez bobspez is offline
Member
 
Join Date: Jul 2017
Location: Southern New Jersey, USA
Posts: 10
Another cmml patient

I just joined the forum today and while looking at older posts I noticed there were a few cmml patients here. I was diagnosed with cmml-1 last September (2016) and have been on watch and wait.
Previously, in April 2016 I was hospitalized with afib for 23 days. (I noticed one of the other cmml posters also was hospitalized for afib when he got his diagnosis.) While hospitalized I was diagnosed with smzl (splenic marginal zone b-cell lymphoma). I got 8 weekly infusions of Rituxan and a pet scan showed the lymphoma was gone. However, I had above normal monocytes since 2013 (above 1.0 since 2014) and the next bone marrow biopsy showed cmml-1. My oncologist sent my slides out for a second opinion and I got additional testing at Rutgers Cancer Institute of NJ, and the diagnosis came back the same.
Presently I am on watch and wait with quarterly blood tests, my most recent a few weeks ago. My WBC is high at 16, my monocytes high at 4.8, and my platelets high at 529, my neutrophils a bit high at 9.2 and my lymphocytes a bit low at 1.2. My bone marrow biopsies in April and Sept 2016 failed to get enough marrow material to evaluate but the peripheral blood had 2% blasts in September. All my other blood test results are somewhere in the normal ranges.
I'm 70 and with the afib am not a likely candidate for a transplant. My quality of life is diminished but basically OK. My strength and stamina are about 1/3 of what they were in 2015 (when I was in very good health), but I sleep well, take a nap every day, eat what I want to keep up my weight. My oncologist said if my WBC get up in the 20's he may advise treatment. If that happens I guess I would prefer Hydrea because it's a pill. I presently take 5 pills a day for the afib, 2 for gout, and one to shrink my prostate. I guess one more wouldn't hurt. One day at a time.
Reply With Quote
  #2  
Old Sat Jul 15, 2017, 03:55 PM
Dick S Dick S is offline
Member
 
Join Date: Jan 2008
Location: Florida
Posts: 189
Good to hear from you Bob and welcome. I too have CMML and as you probably know it's not too common. I fought MDS for 7 years and February last year by BMB show signs of worsening. I was on Darbepoetin Alfa which is supposed to be a red blood booster, but after almost a year it became obvious it was NOT working for me. My Onc decided after another BMB it was time for more drastic measures and I have had 5 cycles of Vidaza and go in this Monday and start on cycle #6. Then they say it usually takes 6 cycles to have a handle or inkling as to whether it's working or not. So far the blood numbers haven't budged much, but I do seem to have a little less fatigue and a little more energy to do things. Alas, no more golf though.
Keep me posed on you progress and I will do the same.
Dick from just south of Orlando.
__________________
Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
Reply With Quote
  #3  
Old Sat Jul 15, 2017, 04:24 PM
bobspez bobspez is offline
Member
 
Join Date: Jul 2017
Location: Southern New Jersey, USA
Posts: 10
Thanks Dick. I saw your comments in the Vidaza thread you started. I also saw you have high platelets like me. That's unusual in cmml, but may be a good thng. So far just my monocytes and WBC are quite high. The rest of the counts are normal or not too far from it. I had a spell last month when I was really weak for about three weeks. Then it turned around and I got a lot of my energy back. Nothing changed. Maybe it's a natural cycle.
__________________
Age 71. April 2016 diagnosed with SMZL (splenic marginal zone b-cell lymphoma). In remission after 8 weekly infusions of Rituxan. Sept 2016 diagnosed with CMML-1. Presently on watch and wait.
Reply With Quote
  #4  
Old Sun Jul 16, 2017, 08:05 PM
Dick S Dick S is offline
Member
 
Join Date: Jan 2008
Location: Florida
Posts: 189
Strange, but the platelets have stayed high. Mine were 609 going into the last cycle #5 and still at 549 after 5 days on Vidaza. I go in the morning to start my 6th cycle, can't wait to see what the numbers look like. I'll try to stay in touch. Dick
__________________
Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
Reply With Quote
  #5  
Old Mon Jul 17, 2017, 11:54 AM
bobspez bobspez is offline
Member
 
Join Date: Jul 2017
Location: Southern New Jersey, USA
Posts: 10
Dick, Good luck. My platelets were 590 last month, close to yours. My WBC at 16. What blood counts are they trying to change with the Vidaza? Why did they start you on the Vidaza?
__________________
Age 71. April 2016 diagnosed with SMZL (splenic marginal zone b-cell lymphoma). In remission after 8 weekly infusions of Rituxan. Sept 2016 diagnosed with CMML-1. Presently on watch and wait.
Reply With Quote
  #6  
Old Sun Aug 6, 2017, 12:54 PM
vickinish vickinish is offline
Member
 
Join Date: Jun 2011
Location: Redondo Beach, CA
Posts: 9
More CMML

I was diagnosed with CMML via BMB in 2006. The trigger to doing the study was low platelets in the 70-100 range.

After watch and wait for a few years my platelets, which had been gradually rising, reached 900. At that point I began hydroxyurea. That quickly knocked the platelets down and did not affect my other counts.

I maintain proper platelet levels on 500 mg three times a week. My white count, always near the top of normal, has lately risen a bit, 12-13 range. And of course my monos are high.

I remain asymptomatic and check labs quarterly, see my doc every six months. I was 60 years old when diagnosed. Now, at 72, I feel very lucky for such a benign course of this disease.
__________________
Vicki - Age 68, dx CMML in 2006. Watch and wait for a few years, now on low dose hydroxyurea to control rising platelets.
Reply With Quote
  #7  
Old Sun Aug 6, 2017, 01:13 PM
bobspez bobspez is offline
Member
 
Join Date: Jul 2017
Location: Southern New Jersey, USA
Posts: 10
Hi Vicki, that is really encouraging news. How high are your monos? Mine are 4.8 and 30%, and WBC 16, and platelets 590. It's great the hydroxy works for you all this time, especially since it is a pill and not an injection or infusion. Have you had your blasts measured by BMB and/or in the peripheral blood?
__________________
Age 71. April 2016 diagnosed with SMZL (splenic marginal zone b-cell lymphoma). In remission after 8 weekly infusions of Rituxan. Sept 2016 diagnosed with CMML-1. Presently on watch and wait.

Last edited by bobspez : Sun Aug 6, 2017 at 01:34 PM.
Reply With Quote
  #8  
Old Mon Aug 7, 2017, 11:42 AM
vickinish vickinish is offline
Member
 
Join Date: Jun 2011
Location: Redondo Beach, CA
Posts: 9
My latest lab showed platelets 208, WBC 12.4, monos 12%. I've only had two BMBs and blasts were under 5% with none in the blood. At the very beginning, when my platelets were low, the blood showed some giant immature platelets. But that has not occurred in many years.

In discussing elevated WBC with my doc, he indicated that hydroxyurea was not a great drug for reducing WBCs. I didn't pursue what drug was best to avoid giving my body even a hint that change in this area was possible. Positive thinking - very important.
__________________
Vicki - Age 68, dx CMML in 2006. Watch and wait for a few years, now on low dose hydroxyurea to control rising platelets.
Reply With Quote
  #9  
Old Mon Aug 7, 2017, 12:33 PM
bobspez bobspez is offline
Member
 
Join Date: Jul 2017
Location: Southern New Jersey, USA
Posts: 10
Thanks Vicki. Your blasts and platelets are actually normal, and your monos and WBC just slightly elevated. That's amazing for more than 10 years of watch and wait. I wonder if the hydoxy 3x a week is responsible?
__________________
Age 71. April 2016 diagnosed with SMZL (splenic marginal zone b-cell lymphoma). In remission after 8 weekly infusions of Rituxan. Sept 2016 diagnosed with CMML-1. Presently on watch and wait.
Reply With Quote
  #10  
Old Tue Aug 8, 2017, 12:46 PM
vickinish vickinish is offline
Member
 
Join Date: Jun 2011
Location: Redondo Beach, CA
Posts: 9
The hydroxyurea is definitely responsible for keeping the platelets in line. We've had to adjust the dose a few times over the years as they began to climb again.
__________________
Vicki - Age 68, dx CMML in 2006. Watch and wait for a few years, now on low dose hydroxyurea to control rising platelets.
Reply With Quote
  #11  
Old Fri Jan 19, 2018, 05:53 PM
bobspez bobspez is offline
Member
 
Join Date: Jul 2017
Location: Southern New Jersey, USA
Posts: 10
Hi vickinish and Dick S. Just posting back 6 months after my initial post and your replies. I was diagnosed with cmml-1 in Sept. 2016 and am still on watch and wait.

I get my blood tested every two months now at the oncologist, plus every 4 months at my GP. My persistent afib is handled with 5 medications and hasn't changed. I recently got 2 iron infusions. My iron is still below normal but the infusions raised the ferritin, which my oncologist says is what matters.

My current blood counts haven't changed that much, they go up and down. Platelets at a new high of 625 although three weeks ago they were just 566. Monos at 4.2, and WBC at 15.3 have both been higher and lower in the past year. All the rest of my counts are near or at normal levels.

Still pretty fatigued and weak. I just started doing about 15 minutes of Tai Chi type exercises from a DVD, and try to walk about 15 minutes (in the house during the cold weather) while listening to the oldies. Sleeping 8 hours a night and take a one hour nap during the day. Maintaining a normal weight with extra cookies and ice cream. Always feel full due to the swollen spleen, never really feel hungry.

How are both of you doing? How are your counts and symptoms? I hope you are both relatively stable.

Bob
__________________
Age 71. April 2016 diagnosed with SMZL (splenic marginal zone b-cell lymphoma). In remission after 8 weekly infusions of Rituxan. Sept 2016 diagnosed with CMML-1. Presently on watch and wait.
Reply With Quote
  #12  
Old Sat Jan 20, 2018, 01:49 PM
vickinish vickinish is offline
Member
 
Join Date: Jun 2011
Location: Redondo Beach, CA
Posts: 9
Doing well

Great to hear that you are stable Bob. I continue the same on my hydroxyurea three times a week. Most recent lab WBC 12.7, platelets 232, monos 16%. No symptoms. Very happy to be this good after all these years.
__________________
Vicki - Age 68, dx CMML in 2006. Watch and wait for a few years, now on low dose hydroxyurea to control rising platelets.
Reply With Quote
  #13  
Old Sat Jan 20, 2018, 06:06 PM
bobspez bobspez is offline
Member
 
Join Date: Jul 2017
Location: Southern New Jersey, USA
Posts: 10
Thanks Vicki. Very glad to hear you are doing well also. Your numbers are great. Glad the hydroxyurea is working so very well for you.

Bob

Quote:
Originally Posted by vickinish View Post
Great to hear that you are stable Bob. I continue the same on my hydroxyurea three times a week. Most recent lab WBC 12.7, platelets 232, monos 16%. No symptoms. Very happy to be this good after all these years.
__________________
Age 71. April 2016 diagnosed with SMZL (splenic marginal zone b-cell lymphoma). In remission after 8 weekly infusions of Rituxan. Sept 2016 diagnosed with CMML-1. Presently on watch and wait.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
One-day Patient and Family Forum in Tampa, Florida, February 27, 2016 Marrowforums News and Events 0 Thu Feb 4, 2016 01:39 PM
One-day Patient and Family Forum in Indianapolis, Indiana, November 14, 2015 Marrowforums News and Events 0 Tue Oct 20, 2015 01:32 PM
One-day Patient and Family Forum in Westwood, Kansas, November 7, 2015 Marrowforums News and Events 0 Tue Oct 20, 2015 01:17 PM
One-day Patient and Family Forum in New Haven, Connecticut, October 24, 2015 Marrowforums News and Events 0 Tue Jul 28, 2015 02:30 PM
One-day Patient and Family Forum in Atlanta, Georgia, August 15, 2015 Marrowforums News and Events 0 Tue Jul 28, 2015 02:22 PM


All times are GMT -4. The time now is 09:56 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2018 Marrowforums.org