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.

MDS low risk mutation sf3b1

Hi @sherrylou, and welcome to Connect. It looks like you’ve been diagnosed with Myelodyplastic Syndromes or MDS for short. This is a group of disorders caused by blood cells that are poorly formed or don't work properly. Through blood work your doctor has determined the mutation and risk level of your disease. Having a low risk is an encouraging diagnosis.

There are some active discussions in the forum with other members who also have MDS. Here are a couple of links to get you started.

Living with MDS (Myelodyplastic Syndromes) https://connect.mayoclinic.org/discussion/living-with-mds/
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Myelodysplastic syndromes (MDS): When do you need to start treatment?
https://connect.mayoclinic.org/discussion/mds-2/
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This is a little informational article about MDS from Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
How long ago were you diagnosed? Are you involved in treatment for your MDS?

Hi & thank you for the links. It really helps to stay informed & read & research about this very weird disease. Ihave been anemic most of my life but was diagnosed recently, on 12/26/24, after my 2nd BMB. I have MDS-RS Low risk SF3B1, K7003 ( which my understanding is a hotspot mutation). I haven't heard too much about this K7003 except in a couple of articles. From my understanding my mutations have a pretty good outlook but I've also come to find out that this cancer can be unpredictable. Some treatments work for some but not for others. I've had my 1st treatment of Reblozyl on 1/3/25 & was supposed to be every 3 weeks but got horrible vertigo/dizziness . On the other hand from just that one dosage I'm no longer anemic as of my last visit. First time in my life I can ever remember not being anemic! So the doc rescheduled the next treatment until 2/20/25. I'm so glad my hgb went back to normal but I must say I've never been so tired in all my life! I don't really understand that. I'm very appreciative to have found this group & others. To know I'm not alone, to share experiences & knowledge & maybe give us hope.