[Kathy Stermer]

I was switched to Vidaza after failing treatment with Revlimid. After 2 cycles of Vidaza without improvement had biopsy which showed dose adjustment down was warranted. Completed 6 cycles without any improvement and after another biopsy will get results later today. Decision was made between myself and physician to complete the full 6 cycles before calling it a failure. Now have to wait for biopsy results to see where to proceed from here.

[Kathy Stermer]

Kevin, believe the only way to diagnose is by bone marrow biopsy test. There are so many variations and stages of disease you are best served at a Center of Excellence where there is collaboration with others familiar in treating. Sometimes it’s just a wait and watch stage and others warrant treatment but an expert in this disease would be my recommendation. Wishing you and your father best of luck

[Kathy Stermer]

Margaret, I am in the intermediate category and get blood about every 2 weeks if my hgb falls below 7. Not sure what your husbands hgb runs but if he’s getting blood every few weeks this is the cause of his fatigue most likely. He’s being smart with the mask and I always carry one with me if out, always ask if I’m going somewhere if anybody sick and try to practice good hand washing always. One can’t be too careful. What dose of curcumin is he taking? My level over 1600 and am taking exjade (just started) but would prefer a more natural route. My only advice with fatigue is, listen to your body and do what you can. Best of luck to all trying to manage this disease as there’s no two alike in disease or treatment. So frustrating!!

[Kathy Stermer]

The papaya extract was purchased on Amazon and am taking the recommended 600mg twice daily. It’s only been a few weeks and hgb has not risen greatly but as I was dropping half to one gram a week, this week stayed above 7 so didn’t need blood. A first in quite awhile. Am sticking with the tumeric cream for now as also just starting generic of exjade and don’t want to introduce too many new things at once plus concerned there may be iron in oral form which I already have too much currently. As I’m not on any treatment presently, will await bone marrow biopsy results in a few weeks and see where disease is at. Good luck to all trying to tweak an acceptable course in this unpredictable disease.

[Kathy Stermer]

I am actually taking the generic of exjade and it’s just awful stuff! Just completing first week and am going to keep an eye on response and negotiate w doc from what you say about effectiveness of one vs the other. Am also using a tumeric cream but had no luck after 2 months but am gonna keep using it. Have also started papaya leaf extract (capsules) and this is one of the first times I’ve gone 2 weeks NOT needing blood. Currently off any treatment as I’ve failed 2 now, Revlimid and Vidaza. Biopsy in 2 weeks to see where to go from here. So far tolerating the exjade but will never be able to enjoy pineapple juice again (my mixer). Like drinking a glass of chalk! Is Jandenu about the same?

[Kathy Stermer]

My doctor tells me exjade and jadenu are basically the same. I too have been getting transfused about every 2 weeks and will be starting jadenu as soon as I get a baseline hearing and eye exam. My ferritin now a bit over 1600 and goal is to get it under 1000. Have been using tumeric cream with little change in levels so will give drug a try. Hopefully the side effects (nausea and diarrhea) will be manageable or negligible. Just hate the thought of more drugs but little choice. The Vidaza after 6 months has had little effect on counts, Revlimid didn’t work so will now just treat low hgb and wbc for now (transfusions and neupogen) and give jadenu a try for rising ferritin level. It’s a bugger of a disease for sure. Another bone marrow biopsy in a few weeks to see what’s up and if anything has changed cytogenetic wise. Wishing all of you the best life you can live dealing with this tricky disease.

[Kathy Stermer]

Mark, you might look into trying some CBD oil for your anxiety. I’ve been using for sleep to shut my mind off at night thinking about it all. Stress is just as bad for your body as if you’re smoking so if you can find find something to help ease that it may be of some benefit. If you have a coop where you live they may be able to recommend a reputable product to help you. Good luck.

[Kathy Stermer]

My threshold is 7 and below that I get 2 units. Mostly it’s based on symptoms of feeling the low hgb but per my doc it’s too much work on the heart when numbers get too low. It will all depend on your age, general physical condition and symptoms. Some don’t tolerate the low number well at all. I’ve found that my body has become to compensate so that I can function pretty well in the 7’s but start to feel it when I get down to the mid 6’s. It will be different for each individual. If you feel like crap you’re probably low enough to need some blood.

[Kathy Stermer]

This info is best reviewed and explained by your hematologist. Bring a notebook with questions and to write notes and also a second person to be your other set of ears. Hopefully you have or are at a Center of Excellence for interpretation and review. There are so so many variables that are best coming from a doc who knows his/her stuff. Hopefully good news

[Kathy Stermer]

Tara, my heart goes out to you and your son and what a difficult journey for you all. There are no guarantees in healthcare but this disease which I also suffer from can so ravage the life of the one affected and those they love. Wish none of us had to do this at all. Holding you and your family in my heart. Thank you for sharing your story.

[Kathy Stermer]

Just finishing up my 5th cycle. So far nothing happening but going another round and see where we’re at. Might need another biopsy but last 3 done for lack of progress shoes disease stable. My body just doesn’t want to cooperate.

[Kathy Stermer]

The ondansetron or zofran should be part of your treatment plan. I find it is so constipating for me I can take it a few hours after I get my Vidaza to last me into evening as it’s only every 8 hours and I load up on Senna 4 tabs daily a few days before and after treatment. As everyone responds differently you’ll have to see what works best for you. Hopefully you’ll have a good response.

[Kathy Stermer]

Yes Dale it was versed what in the medical world is known as the “I don’t care” drug. Everyone has a different pain perception and should be comfortable whatever they choose/need to get the biopsy done. Had propofol for my first one and as I was asleep don’t know how much digging was done but I was really sore. Found a good PA who has done my next 3 in clinic with versed and lots of local and all good.

[Kathy Stermer]

Sorry you gents are dealing with this, GVHD is a tough but to crack and occurs post transplant more than you know. My friends son had a transplant at 26 and engrafted but the GVHD took it’s toll on his lungs and after 6 years of living on oxygen, had a double lung transplant 4 years ago, now back in and out with only 50% lung capacity. Quality so important. Fixed one thing and screwed up something else. Sure hope things improve for you both.

[Kathy Stermer]

I have been transfusion dependent since December of this year and am up to 30 transfusions so far and yes, iron levels high and also antibodies now in blood. So far Revlimid failed to treat, now on Vidaza so far no response after 4 cycles. BMB which I’ve had 3 since starting treatment shows little change in disease. Blood bank now informed me they need 30 days notice if any surgery to procure matched blood for me due to antibodies and am using a Tumeric cream daily for high iron levels hoping it has some benefits in reducing high iron levels. Still waiting for response on all fronts of this disease.

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