[Kathy Stermer]

I personally feel the nurses that work with physicians are a valuable resource for who is the best physician to treat your mom. If you can get a number for the nurse coordinator or nurse triage department for the facility you’re considering, try that as a potential recommendation. They work with them everyday and know who is good and experienced. Good luck.

[Kathy Stermer]

I too had nausea kick in day 2 of my first week. They gave me zofran which I take as soon as I get home and it helps. Also constipation so will start senna a few days before my next treatment. All resolved within a few days of completing my cycle

[Kathy Stermer]

I was given zofran for nausea which I take as soon as I get home from appt which seems to help with nausea. Nausea and constipation seem to be the most prevalent side effect from others input. As we all are different, try what seems to work best

[Kathy Stermer]

If blood tests are indicative of something going on another BMB would most likely be the best way to rule out anything more. Keep an eye on your lab values maybe go back for follow up labs sooner to be sure.

[Kathy Stermer]

Pat, as a MDS patient and also a nurse of 35 yrs I’m happy to talk with you via phone and explain and answer some of your questions. Have been dealing with this disease for a year and have a wonderful, supportive doctor who guides me but let’s me “drive the bus” on this journey. Call or text me at 612-245-6925. I find it helps lots to talk with others dealing with this as each of us has a bit different situation/story.

[Kathy Stermer]

I have had this frequently most often related to my hgb being low especially when I lay down at the end of the day if fatigued. This is most definitely a sign that hgb is low. For me it’s distressing as it’s a constant reminder to me that something is wrong. Learning to listen to my body

[Kathy Stermer]

Just finished my first week of Vidaza and other than one bit of nausea controlled with taking zofran when I get home and a bit of constipation the fatigue at end of week most profound. Am used to being fairly active and this was definitely noticeable. Hopefully will get a better read on what to expect next round

[Kathy Stermer]

My experience was that after a year of taking Revlimid my counts never did change much and after 8 months and multiple adjustments in dose ended up needing transfusions almost weekly so taken off and started on Azacitidine which I’ve just finished my first week. I was so hopeful but my anc continued low the whole time hence the dose adjustments. There are so many variables to this disease and everyone’s body reacts differently to drugs that it’s impossible to predict a time other than going by the average for “most” patients. Good luck to your mom and hope it continues and is a successful treatment.

[Kathy Stermer]

Agree with above advice and know from my own experience with 13 units of blood under my belt since December if your marrow is not making healthy red blood cells for whatever reason, the blood is a bandaid at best. For each unit typically gets a one gram increase in numbers but I’ve had instances where I get blood and back down the next week. Labs are important but how one feels is most crucial. The body can be very good at adapting to circumstances. I’ve been out snow blowing my property only to go in and find my hgb is 7. If I feel like crap, I go in and get checked.

[Kathy Stermer]

Stacy, was on Revlimid for a year starting at 10mg dose and was was continually adjusted down due to white count being low. Have been neutropenic all year taking antibiotic, anti fungal, and lately anti viral. This disease has so many variables to it no course is set in stone I’m finding. Also had 2 marrows done Oct/Dec thinking something in my marrow had changed but not the case. I’ll give this a whirl. Am fairly at peace now with whatever happens from here forward.

[Kathy Stermer]

As another dealing with del 5q I tried a year on Revlimid but could not keep my counts up so have switched to Vidaza as of yesterday. All I can say is this disease has so many variables and each individual has their own response. It will be a life long battle but have decided life is too short to waste a minute and as this is my new life, trying to manage the best way possible. Yes to Center of Excellence, listen to your body, take control of your care and wishing us all luck on this journey

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