Low Platelets with Myelodysplastic Syndrome (MDS)

Recent prostate surgery, radiation treatment and chemo therapy are what is causing low platelet, confirming with hematologist

Hi @eibsee1948, I’m sorry to hear about your cancer diagnosis and truly empathize with all you’re having to go through to get your life back to normal. All the chemo and radiation therapy sure takes a toll, but our bodies are remarkably resilient. So hang in there, in a few months you’ll be doing much better.

The few weeks after the chemo you’re going to have some low blood numbers until they start rebounding. I’m thinking your chemo and radiation wasn’t very long ago with the reduced platelet count. It takes time for the numbers to start rising again. Your red and white blood counts will drop, along with your platelets. The hematologist will let you know if you need platelets. They may start regenerating on their own within a couple of days. If not, then he/she may elect to give you an infusion of platelets to keep you safe. Bleeding is a concern if you should cut yourself, have a nose bleed, etc.
How are you feeling?

@shels93, You’re most certainly not a hypochondriac. You saw the urgency in your husband’s condition and it’s commendable you reached out to his cardiologist right away. As a wife, I know sometimes it takes Herculean effort to get our guys to head for the doctor. They tend to ‘just tough it out’…so, good for you. 🙂

Myelodysplastic syndromes (MDS) are a group of blood disorders characterized by abnormal development of blood cells within the bone marrow. There are several types of MDS so your husband’s hematologist will help to narrow down his specific type so that he can begin some treatments to slow the progression.
I’ve provided the Mayo Clinic’s informational page on MDS just to help inform you a little more about the disease. From experience, I know that reading some of the information can sound a little daunting. Not everything you read will apply to your husband but this will give you a little overview until you meet with his doctor.
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
You husband will most likely have a few more blood tests and possibly a bone marrow biopsy coming up to help get a more exact diagnosis.
It can be tough when first diagnosed to even know what to ask the doctor. Since I’m expecting this will be his (and your) first visit with the hematologist, I thought I’d give you a link to some conversations about How to get off to the best start with a new specialist.

Your Tips on How to Get Off to the Best Start with a New Specialist: https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

How’s your husband feeling about all of this?

@loribmt question...my husband's hands are swollen and have been since yesterday early evening. Is this an immediate concern? It happened before and resolved after about 2 days but not sure if this is more cause for concern based on frequency. Thanks.

Are his feet and ankles swollen too? Sometimes edema can be caused by poor circulation. Have you mentioned this to his cardiologist? Has he eaten more salt that usual in the past day or so. Any difficulty breathing? Pain? Sitting more than normal for him?

Try having him move his arms, hands and fingers every hour by putting his arms over his head, opening and closing his hands to promote circulation. He can even add a walk around inside the house at the same time. If they stay swollen it would give you some peace of mind to give his cardiologist a call. Of course, if you feel it’s an emergency don’t hesitate to call sooner.

Ok we’re so I start. My husband had been watched by a hematologist for at least 5 years for a low white count and this hematologist though the low count were just going to be his normal until wham white count dropped to 2.4 , platelets down to 63 and hemoglobin 12 so sought out the hematologist again and a bone marrow biopsy was done. Came back from his present hospital with diagnosis of non Hodgkin’s lymphoma and would just need to continue to watch. Well ok but the hematologist felt this diagnosis didn’t fit his symptoms and they had just received affliction with Mayo so he sent biopsy info and report back to have MDS-EB2 (Myelodysplastic syndrome with extra blast). So off to different hosp for specialty area. He was seen sept 12 for his first visit and in sept 15 started chemo(vyxeas??). He is now 38 days post start of chemo. Had to be hospitalized for infection (fevers) sept 24 to Oct 17 with no sources reported out. He is presently at home recovering and has yet been able to truly feel good. He aged like 15 years and walks with walker and barely able to dress self. From hospitalization he has extra fluid load and taking lasix and not getting any sleep with voiding just about every 1-2 hrs. At this point he isn’t even close to being a transplant candidate. I am just asking for anyone to respond to let us know this will all work out. His counts just started to come back up and skyrocking. He goes back to clinic to receive blood products and albumin and potassium frequently. Any advice.

Ok we’re so I start. My husband had been watched by a hematologist for at least 5 years for a low white count and this hematologist though the low count were just going to be his normal until wham white count dropped to 2.4 , platelets down to 63 and hemoglobin 12 so sought out the hematologist again and a bone marrow biopsy was done. Came back from his present hospital with diagnosis of non Hodgkin’s lymphoma and would just need to continue to watch. Well ok but the hematologist felt this diagnosis didn’t fit his symptoms and they had just received affliction with Mayo so he sent biopsy info and report back to have MDS-EB2 (Myelodysplastic syndrome with extra blast). So off to different hosp for specialty area. He was seen sept 12 for his first visit and in sept 15 started chemo(vyxeas??). He is now 38 days post start of chemo. Had to be hospitalized for infection (fevers) sept 24 to Oct 17 with no sources reported out. He is presently at home recovering and has yet been able to truly feel good. He aged like 15 years and walks with walker and barely able to dress self. From hospitalization he has extra fluid load and taking lasix and not getting any sleep with voiding just about every 1-2 hrs. At this point he isn’t even close to being a transplant candidate. I am just asking for anyone to respond to let us know this will all work out. His counts just started to come back up and skyrocking. He goes back to clinic to receive blood products and albumin and potassium frequently. Any advice.

Ok we’re so I start. My husband had been watched by a hematologist for at least 5 years for a low white count and this hematologist though the low count were just going to be his normal until wham white count dropped to 2.4 , platelets down to 63 and hemoglobin 12 so sought out the hematologist again and a bone marrow biopsy was done. Came back from his present hospital with diagnosis of non Hodgkin’s lymphoma and would just need to continue to watch. Well ok but the hematologist felt this diagnosis didn’t fit his symptoms and they had just received affliction with Mayo so he sent biopsy info and report back to have MDS-EB2 (Myelodysplastic syndrome with extra blast). So off to different hosp for specialty area. He was seen sept 12 for his first visit and in sept 15 started chemo(vyxeas??). He is now 38 days post start of chemo. Had to be hospitalized for infection (fevers) sept 24 to Oct 17 with no sources reported out. He is presently at home recovering and has yet been able to truly feel good. He aged like 15 years and walks with walker and barely able to dress self. From hospitalization he has extra fluid load and taking lasix and not getting any sleep with voiding just about every 1-2 hrs. At this point he isn’t even close to being a transplant candidate. I am just asking for anyone to respond to let us know this will all work out. His counts just started to come back up and skyrocking. He goes back to clinic to receive blood products and albumin and potassium frequently. Any advice.