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DiscussionWaldenstrom's: Should I take the new medication (rituximab)?
Blood Cancers & Disorders | Last Active: Jan 23 4:43pm | Replies (50)Comment receiving replies
Replies to "Hello, Diagnosed in February 2024. Treatment is INQOVI. I get frequent blood and platelet transfusions. No..."
Hi @callahan I provided a link for you in my previous reply for one of many conversations with MDS members.
Several more discussions can be found by typing MDS in the upper search bar. There are no zoom support groups. But you’ll find the members in the blood cancer group are very open, honest and supportive in talking about our illnesses and treatments.
Here’s that link again.
Living with MDS (Myelodyplastic syndromes)
https://connect.mayoclinic.org/discussion/living-with-mds/
As MDS progresses, immature blast cells that have basically lost a limitation switch, continue to over proliferate and begin to crowd out the healthy cells in the bone marrow. This interferes with production of all blood products. Eventually blasts find their way out into the blood stream replacing red blood cells and platelets. Over time patients can become transfusion dependent. When that happens if other medications are no longer an option or ineffective and a patient is a good candidate, it’s generally recommended to have a bone marrow transplant. At this time it is the only potential cure for MDS.
From my understanding, hen there are excess blasts cells found in an MDS patient greater than 10%, it can essentially be considered as diagnostic for AML. I don’t know your blast level but you mentioned they are in excess. I had AML and would be more than happy to talk to you about this next possible stage of MDS.
As for the digestive issues, Inqovi can cause diarrhea and constipation and I’m so sorry you’re having to deal with this complication. I wasn’t on this particular chemo but another that was pretty rough on the guts. Limiting dairy helped and definitely nothing with lactose. The biggest aid for me was eating plain Greek yogurt daily or in a pinch I ate Activia yogurt. A good quality yogurt with active cultures becomes lactose free during the culturing process so it’s healthy for people to eat who are lactose intolerant. I added at least a teaspoon of ground flax seed along with each serving. The yogurt helped keep the gut biome healthy and the lining of my intestines happier. It also helped prevent constipation. Drinking at least 64+ ounce of water per day is also extremely helpful in clearing the body of toxins and keeping things moving along and out… Eating plenty of soluble fiber daily from fruits and veggies is helpful.
Has your blast level progressed or changed since you’ve started on the Inqovi?
Has your doctor mentioned the possibility of a bone marrow transplant?