Waldenstrom's: Should I take the new medication (rituximab)?

No side effects after my infusions, but did have a reaction during my second infusion which was excessive shaking; The nurse slowed the drip down and things went well. The only other side effect was being tired afterwards resulting from the Benadryl that was administered in prep for the Monoclonal antibodies infusion. I feel very fortunate so far.

Thanks for sharing.How many infusions have you had? Did the side effects get worse or better with the third? I really appreciate your feedback. Hope you are on the road to health.

Oncologist sent me to cardiologist for a ton of tests to make sure my heart wasn’t being effected due to disease meds. Som fluttering and a little more fatigue. Dr found thee valves that are leaking. Two mild, one moderate. Follow up appt scheduled with heart Dr And I see oncologist next Monday. Can Waldenstroms be causing this? Never before diagnosed with heart issues.

I too have been diagnosed with in 2022 still watch and wait. Thank goodness this type of condition is very slow growing. I wish you all the best. You got this! Andi G. ♥️

I had four infusions and six months later the doc said I was doing reasonably well. I’m hoping I can keep that going. The monoclonal infusions so far have worked well for me.

Any heart issues? They just found leaky valves that maybe caused by Waldenstroms or neds

Hello,
I want to join a support group for MDS patients. And get information about balancing diarrhea and constipation.

Welcome to Connect, @callahan. There are several discussions in the forum with members who have MDS.
There are several subtypes of MDS so while you’re reading, some of the stories and experiences shared might not apply to you.

I’m posting a link below for you. I think this discussion would be a good place to introduce you to the MDS support group. (More can be found by typing in MDS, or Myelodyplastic syndromes in the search bar at the top of the page. Feel free to jump into any conversation!

Living with MDS (Myelodyplastic syndromes)
https://connect.mayoclinic.org/discussion/living-with-mds/
This reply has links to some good informational articles that may be helpful for you to read about MDS. https://connect.mayoclinic.org/comment/925760/

How long ago were you diagnosed? Are you following any treatment plan for your MDS? Have you discussed your diarrhea/constipation issues with your doctor?

Hello,
Diagnosed in February 2024. Treatment is INQOVI. I get frequent blood and platelet transfusions. No advice re the diarrhea/constipation issues. How can I join a support group (via zoom is ok) with my condition MDS II with excess blasts. Thanks for your reply.

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?