Myelodysplastic Syndrome (MDS): how to increase red blood cells?

Kathy you are so very kind. I will certainly keep in touch here.
The things you wrote about your marriage really touched me. My husband is also my best friend and we’ve been through a lot together. He is also a great problem solver and keeps our house in repair. So your concerns about your house resonate with me.
I hope you have neighbors or friends nearby that can help you or give advice/recommendations. Just learning to live with the loss is hard enough. Sending you my best wishes.
Dorothy

My little sister (age 63) was diagnosed with MDS a little over 3 years ago. She began getting weekly injections of Procrit. It raised her hemoglobin to just under a 10 2 months ago. Since then all her counts are falling. Hemoglobin down to 8, wbc & rbc 1.8. She just had a 2nd bine marrow biopsy. Preliminary results look ok but still waiting for a few more test results. Oncology moved her appt up a month. Any ideas what's going on???

Hi @pathilt. Welcome to Mayo Connect! Myelodyplastic Syndromes or MDS are a group of bone marrow diseases which affect how the bone marrow creates healthy blood cells. In your sister’s case, apparently her bone marrow wasn’t producing enough red blood cells. Procrit is a medication that can help the body produce more red cells which has kept your sister’s hemoglobin somewhat elevated.

MDS conditions can evolve or change over time. The Procrit, while it gave your sister more red blood cells, isn’t a treatment for MDS. It is possible that after 3 years, your sister’s condition could be changing and may require a treatment plan to help control any progression.
The bone marrow biopsy will give her doctor an overall picture of how well her bone marrow is working to produce healthy cells.
From my own experience, speculating on why numbers change causes more anxiety than the reality. But I also know waiting is so hard so you both have my empathy. I’m not patient when I want to know my results too!

One note that I would like to make is that your sister’s hemoglobin is at 8, I’m expecting she’s been feeling pretty sluggish and tired. A count of 8 is at or near the critical cutoff for requiring a blood transfusion. Has her hematologist oncologist mentioned having a transfusion?

Hi @pathilt, I just wanted to check in with you to see how your sister is doing. I wrote a response yesterday and wondered if you’d seen it…here’s the link: https://connect.mayoclinic.org/comment/1111910/

With your sister’s low WBC, RBC and her hemoglobin of 8, it would be important for your sister to be seen rather soon. As I mentioned before, MDS can progress into a much more aggressive form of blood cancer. When you said Oncology moved her appointment up a month, did you mean that she’ll be seen within a few days? In your sister’s blood work or bone marrow biopsy was there any mention of blast cells?

Her appt is in 2.5 weeks. No mention of blast anywhere that she could find looking back. I am going with her to the oncology appointment. My oldest sister & I are compiling a list of questions because little sis doesn't ask any. The blast is one of my questions. Any suggestions on other questions to ask is appreciated!

@pathilt. I’m glad your sister has her siblings watching out for her and if needed will be her advocate to get an appointment sooner. It’s not my intent to alarm any of you but as someone who has had a serious and aggresive blood cancer 5 years ago, I’m concerned about the low blood numbers your sister has right now.

Her hemoglobin has dropped down to 8 within a short span of time. My guess is she’s feeling really crumby right now and has about zero energy. She has a greatly reduced amount of red blood carrying oxygen in her body.
Generally, the threshold for needing a blood transfusion is a hemoglobin level below 7 to 8 grams per deciliter (g/dL) or lower. So she is knocking at that door.
With her white blood count down as well, her immune system is compromised putting her at a greater risk for any infections whether viral or bacterial, food borne or fungal. So it’s important for her to be wearing a mask around people to avoid getting ill and no gardening. Frequent hand washing and antibacterial hand sanitizer will be helpful.
It might be a good idea to check her temperature. If she has an elevated temp of 100.4 or over, she needs to call her oncologist office right away.

Some questions you might ask her doctor:
What type of myelodysplastic syndrome do I have?
Will I need more tests?
What is my prognosis?
What is my risk of leukemia?
If I need treatment, what are my options and what do you recommend?
I have other health conditions. How can I best manage them together?
Are there restrictions I need to follow?
Are there brochures or other printed material that I can have? What websites do you recommend?

Those are just a few ideas along with the question you’ve mentioned about asking if there are any blasts discovered in her peripheral blood.
Blasts are immature blood cells that are not usually present in circulating blood. If they are found in the blood, it can indicate that the production of these immature and ineffective cells are out of control and crowding out healthy cells.
With all of her numbers substantially lower, I’m curious, what is her platelet level?

Platelet was 128 last Monday & down to 117 thursday

From the information you’ve given it appears all of your sister’s numbers have trended downward the past 2 months. The platelet level of 117 is below the ‘normal’ low of 150 (150,000). If it continues to lower she may experience prolonged bleeding from a cut or nosebleeds. Has she been having more bruising than usual?
How about her general health right now? Is she having any symptoms of shortness of breath, headaches, fever, night sweats?

This poor woman is one big bruise from elbows to wrists on both arms. She has been more tired & blood work showed anemia is worse. She's always been little but now at 95lbs. Very seldom will she admit she feels bad but I can tell just by looking at her. Insurance made her wait for counts to drop 6 weeks in a row before approving the last biopsy

Reading this last message had me holding my breath! Your poor, sweet sister! That’s just crazy with her insurance provider mandating that her blood numbers have to drop six weeks in a row before approving a biopsy! That should be at the discretion of the hematologist oncologist!

I know her doctor is waiting for the full cytology report from her biopsy before he sees her. But she doesn’t need to be stoic while waiting. There are no awards given for feeling so awful. She may even check in with her oncologist to see if a blood transfusion might be warranted. She may feel a heck of a lot better with an infusion of red blood cells. In the meantime before her appt, if she starts feeling very weak, is extremely fatigued, or has shortness of breath or dizziness she may need to scoot to the ER.

I know this all sounds frightening and it is disconcerting to see your sister suffering. But try not to despair. There is hope for MDS patients. If her MDS is proliferating, her doctor will talk about a couple of treatment options to help restore her to good health. Will you please keep me up to date on your sister?