Low hemoglobin and enlarged liver and spleen

Dear @klh1107
Hope you are doing well
can you share your blood report with count?

Your story mirrors mine. I went through the exact situation for a long time. Many Blood transfusions. I was taking both Aranesp and Reblozyl injections to boost my Red cell count. When I started taking VONJO, my spleen shrank very quickly and that alone helped me to feel better. The they started me on Dacogen infusions. It made me feel bad, but over time it killed a lot of cancer cells. When they took me off of it, things jumped up higher than they had been in 10 years! I've been riding that high for close to a year now. I'm sure it is slowly starting back down, but it is still FAR better than when I started. If things get back to the low end eventually, I may have to restart the Dacogen, or move on to a new drug. Good luck with your treatments and don't let fear get you down. If you are of such a persuasion, then believe.

Welcome to Connect, @klh1107 I agree, it’s no fun having all those blood tests. But they are all part of the process to help you find out what’s going on in your body with the low hemoglobin and enlarged spleen and liver.
Because our bodies are so complex, it can take some time to diagnose blood conditions. So hang in there!
What tests have you had run so far?

I'm sharing my last one. My blood tests vary a lot. Thanks!

Thank you! Most days I'm very positive, but some days I just get tired of the process.

We all get tired of the process but it becomes a part of our life and we work around it. I've dealt with this situation since I was 60 yrs old. I'm now 76+ yrs old. At first things were not very bad and appointments/treatments were few and far apart. But as time went by things became much more often and involved. Traveling to treatments from our beautiful mountain home became such a task that we finally gave in, sold, and moved down to the city to be closer to the Cancer Clinic. About 3-4 yrs ago things reached the point that I was getting a CBC every week. Aranesp injections every two weeks, 2-Reblozyl injections every three weeks and 5 days in a row of Dacogen infusions every four weeks. Blood transfusions varied from each week to once every 6 weeks. Oncologist visits varied but were often. Some hospital time was squeezed into all of that. This went on until about 8-9 months ago when my blood counts got so low that they had to stop the Dacogen infusions. At that point they were out of options and I was encouraged to "Get my affairs in order". Within a couple of weeks of stopping treatments everything turned around drastically and very quickly. My CBC jumped up drastically and became virtually normal. I was no longer fighting to keep my HGB above 7, it jumped to over 13. All of my numbers looked good! Other than continuing to take Vonjo orally, all treatment was/has stopped because I no longer qualified for or needed any of it. I now get a CBC once a month. The last two showed that things are very slowly dropping but are still far from what they were and are still high enough that no treatment is required. It is likely that at some point I will need to re-start some type of treatment, but in the mean time the break from "the process" has been a God Sent. I an my family have enjoyed it and will be forever grateful for the treatments given to me by my wonderful Doctor. So yes... there were many days when I was just tired of the process, but it made me appreciate the good days that much more. Never say die and never give in.