MDS treatment options other than bone marrow transplant

Hi Howard, even though this MDS is the diagnosis you were expecting it’s still a shock to have the confirmation. As for treatment, it’s impossible to speculate on what the options will be. At this point, I think it’s just wise to wait and see what your doctor puts out there for you, for your particular myelodyplastic syndrome. There are several MDS types.

Each one is potentially treated differently depending on that type.
Some meds can increase the number of blood cells if that’s what’s needed. Other meds can suppress the immune system or stimulate blood cells to mature. Sometimes there are genetic components involved that will call for completely different meds. I’m not trying to be evasive but there is just no way to know for sure what your doctor will suggest for treatment without knowing the facts.

The only treatment option that offers the potential of a cure for myelodysplastic syndromes is a bone marrow transplant. This gives your body an entirely new immune system with a fresh start.
I’ll be waiting anxiously with you for Friday, to hear what your doctor has to offer by way of treatment. Then I can help connect you with others going through a similar experience. ☺️

Thanks for your info an I will let u know hopefully stem cell can wait a bit this will be my third scare just gotta face it an beat it👍😎already beat colon an lung tumor 5 an 8 years ago sucks gettin older

Hello everyone so doc said mds pre leukemia an said due to past cancer I can’t have stem cell transplant but medication an transfusions should keep me goin for couple years main treatment drug will be Inqovi an transfusions wen needed like to hear how other MDs fighters here did with this drug or it’s injectable thanks

So dx is MDs EB-2 gona be on meds an transfusions as needed any insight from all my MDs fighters😎

Ok dx is mdsEB-2 so any info be welcomed thanks

Hi Howard, I looked up the classification for your MDS-EB2 diagnosis. The EB-2 is the staging of your disease. EB stands for Excess Blasts.
Blasts are immature blood cells, which we don’t like to see outside of the bone marrow. So if you have some free floating in your blood, that signals the need for treatment.
Because you’re not eligible for a bone marrow transplant your doctor is putting you on a type of chemo therapy (Inqovi) which was approved for patients with MDS.

From what I’m reading, patients who take the drug have a much lower frequency of needing transfusions. So that’s a plus for you.
However, it is a type of chemotherapy so there may be some side effects such as nausea. The article I read today suggested asking your doctor to prescribe anti-nausea medication to take along with it, in case that happens. Not everyone has that side effect. It is a tablet or capsule taken for 5 days every 28 days…unless your doctor prescribes differently.
You may also experience some fatigue and changes in blood counts so you will have more frequent blood tests to make sure your blood numbers are good.
This also impacts your immune system so you could be more susceptible to colds, flu, infections, etc. so you’ll want to just add a level of caution with being out with people, such as wearing a mask in public, washing hands frequently, etc.

Other than what I’ve read and what can be found online about Inqovi, that’s out of my area of experience. Hopefully there will be other members who have been on Inqovi who will share their journey with you.
When do you start your first cycle?

I have had MDS low risk for for 7 years on a watch and see. It’s my platelets that are a problem running at 30 to 40. Norm us 150 to
450.
Now I need hip and knee surgery and need to
Raise my platelets. Had a trial platelet transfusion and it did nothing. Now they say I need an exact blood match. Will see what happens

Thanks for info an wat u said my doc explained to me now it’s time to go ahead an see how it works thankfully treatment hopefully helps keep us goin an surviving

Like you my doc has told me stem cell was not an option for my MDs so I’m starting treatments an fusions as needed but will seek other opinions on stem cell

Hi all gona start Inqovi next week like to hear from anyone who tried this treatment an how they’re doin