New member confused and worried

[Ulla]

Hello
I have been using the MPD network for about a year, since I had a diagnosis of myeloproliferative disorder, ET. I had high platelets and low hemoglobin (around 100 hgb, platelets from 500 to 700. My hemo did not recommend any treatment besides aspirin. In April my hemoglobin dropped to 85 and I had a BMB which suggested RARS (those ringadings showed up) but since platelets were still too high, perhaps a myelodyplastic/myeloproliferative disorder. I have not got all the results about chromosomal changes. Again, in June my hemo said to watch and wait! I am sort of depressed, with great fatigue.
In Canada some of the newer meds are not available. May in trials? I am looking for another hemo for a second opinion.

[Dick S]

Sorry to hear that, but welcome to the club. I may not be the longest, but I have been on the "watch and wait" list for over two years now, almost 2 1/2. I have MDS of the RCMD type (see below). I certainly can empathize with you on the fatigue issue, it has been with me constantly from almost day one and some days can seem to be all consuming, but you can't give up. Yeah, I had a little of that depression crap too, but finally I had to realize this is my life that I am fighting for and I had to tell myself to "knock it off" and get on with the fight. I don't know your age, but you may have the option of BMT (possible cure) sometime downstream, I don't because of my age makes it impossible, so the only thing I can look forward to is treatment to prolong my life.
Don't give up, I'm with ya!

[LynnI]

Originally Posted by Ulla

Hello
I have been using the MPD network for about a year, since I had a diagnosis of myeloproliferative disorder, ET. I had high platelets and low hemoglobin (around 100 hgb, platelets from 500 to 700. My hemo did not recommend any treatment besides aspirin. In April my hemoglobin dropped to 85 and I had a BMB which suggested RARS (those ringadings showed up) but since platelets were still too high, perhaps a myelodyplastic/myeloproliferative disorder. I have not got all the results about chromosomal changes. Again, in June my hemo said to watch and wait! I am sort of depressed, with great fatigue.
In Canada some of the newer meds are not available. May in trials? I am looking for another hemo for a second opinion.

Ulla;
Hi, I am also from Ontario. I too have recently been dx with MDS/MPD Unclassified, but as of yesterday at Sunnybrook he said I am primarily MDS RA, that the MPD is minor.
I know what you are going through, the fatique is terrible, my hemoglobins are usually around 80 unless I've had a blood transfusion.
If you are not being seen by a Centre of Excellence like Sunnybrook, I would suggest that you do.
Dr. Wells the MDS specialist at Sunnybrook, is the most likeable, compassionate and friendly Dr. that I have ever met. He is also on top of all the lastest treatments etc.

PM me anytime, I know that this often appears to be a very lonely disease along with confusing. Maybe we could do lunch or coffee sometime and compare notes

Lynn

[Ulla]

Hi
I almost didn't check today, I thought that nobody would respond so quickly. You are right, it makes you feel better to know there are others out there. I did not give my age, it is 75 Yes! and so there will be no BMT. But I am hoping there is something else maybe some trials. I heard about Erythropoetin being helpful for some people, but it is expensive. I would like to see this Dr. Wells, and maybe I can get a referral for a second opinion.

[Zoe's Life]

Ulla,

I thought in Canada your meds would be paid for? I am in US, my insurance pays for injections given in the hospital, but not very much in pill form.

Zoe

[Ulla]

I was told that there was no medication available for me, and that I did not need any since my hemoglobin was not that low. But it did drop from around 100 until this spring to around 85 now, and I can feel the difference. I am wondering how dangerous is low hgb for my heart. I also am sure that my brain is more slow these days. I do a exercise a little by going for slow walks. What foods are good for me? I have lost my appetite and some weight, I especially do not like meat any more.
Ulla/
RARS, posssibly MDS/MPD

[LynnI]

Originally Posted by Ulla

I was told that there was no medication available for me, and that I did not need any since my hemoglobin was not that low. But it did drop from around 100 until this spring to around 85 now, and I can feel the difference. I am wondering how dangerous is low hgb for my heart. I also am sure that my brain is more slow these days. I do a exercise a little by going for slow walks. What foods are good for me? I have lost my appetite and some weight, I especially do not like meat any more.
Ulla/
RARS, posssibly MDS/MPD

I am not sure what effects the low hemoglobins have on the heart, but I know that I hate that feeling of the pounding heart and rushing in my ears.
I also believe that my brain doesn't work correctly either by being slow to process etc.
I don't have an appetite either, its because my spleen is slightly enlarged which crowds the stomach making the stomach feel full. I often drink Carnation's Instant Breakfast, expensive but one a day does help with how I feel.
My Dr. is somewhat concerned about the amount of juices that I drink (I'll drink more than eat) because of my sugar levels. They are going to start keeping an eye on that to avoid any problems.

Hope that helps
Lynn

[Ruth Cuadra]

Hi, Ulla.

Everyone's tolerance for low hemoglobin is different, but it can strain your heart if it is too low because the heart has to work harder to get enough oxygen to the whole body. Decreased cognitive functions and fatigue can be noticeable, but heart damage that results from low hemoglobin is harder to detect. You'll want to work with doctor to determine the optimal hemoglobin count at which you should be transfused.

You and Lynn might also want to get in touch with Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC) through our Canada forum for details about doctors, medical centers, insurance and other issues as they relate to patients in Canada.

Hope this helps.

Ruth Cuadra