Hi Birgitta - I'm sorry you are struggling - I've appreciated your posts -they have always been so informative and compassionate. You've probably thought of everything - but is there a chance to get enrolled in a clinical study - I know they are at least a couple involving Vidaza and low risk MDS - or maybe antibiotics? In any event I do hope you rally - and enjoy every day.

I too am sorry to hear of your current struggles.. And hoping you improve soon. You have always been and continue to be a wealth of knowledge, support and inspiration to us all here. Thank you and best wishes for the new year.

Neutropenia
 

Hi Paul and Sharnie!
You know there is a trial with oral Vidaza but only for patients not treated with Revlimid, that I have had during one year.

I had antibiotics iv in hospital and continued with tabl. until today. Tomorrow I will do bloodwork and next day I will get blood. Hope the neutrophils have increased.

I will thank you both for the kind words!
Kind regards
Birgitta-A

Hi Birgitta,
Sorry to hear about your struggles.
You have been a pillar of support for many of us here with your wealth of knowledge and compassion for all.
Wish you a speedy recovery.

-rkp

Hi Birgitta -

There is also a study comparing lower intensity vidaza with dacogen in low risk MDS patients being led by MD Anderson - I understand the drugs are very similar and if one drug would gel the other probably would too - I was trying to enroll but it was taking a while so my Dr. just started me on Vidaza as my numbers were falling and I was feeling lousy. The MD Anderson website indicates that prior treatment with either of the two drugs would disqualify - but doesn't mention any other drug. May be worth a try. Here is a link to the studies website:
All the Best - Paul

https://clinicaltrials.gov/ct2/show/NCT02269280

It's very reassuring that despite your low ANC you continue to remain in (relatively) good health.

I've often wondered why I could remain healthy with very low neutrophil counts and it crossed my mind on more than one occasion that perhaps my naturally high zinc levels somehow protected me from infection. I read an article somewhere that patients with high ferritin/iron levels were more at risk of sepsis with neutropenia than those with normal iron levels. That made me interested in the relationship with other metals and neutrophil function.

As I said it's purely speculative, but I have wondered if high zinc levels can some how be protective against infection in the setting of already neutropenic patients. Perhaps you have access to some research articles on the subject.

My cousin Mary wrote to me recently from Stockholm and told me that the weather was beautiful. Cold and crisp and sunny with a blanket of snow. Normally she's like a migrating bird and heads for Spain or Hawaii for winter so it must be very nice for her to stay home so far this year.

Wishing you very many more pleasant walks with your grandchildren.

Neutropenia
 

Hi rkp, Paul and Chirley!
Tank you for the kind words rkp!

Paul. You know I live in Sweden.

Chirley. I am now too weak to go out. I finished Prednisone much too sudden due to fever. I had been taking 30 mg during Oct and Now and 20 mg until hospital care 12/24. Prednisone should be tapered bur that was not possible. Then my heart is now showing signs of iron overload, so I have to take drugs to prevent oedema in the lungs.

Hope you all manage as well as possible!
Kind regards
Birgitta-A

I'm sorry to hear that you have become so weak. i just want to thank you for all the times you have been there for me when I've been struggling with my health issues and the inner turmoils they have caused. I know from your posts that you are surrounded by loving family and that is one of the greatest blessings you can have in life.

I hope you can recover your health back again soon.

My thoughts are with you.

Chirley

Neutropenia
 

You know Chirley that my thoughts are with you too!
Kind regards
Birgitta-A

Hi Birgitta,

I hope your bloodwork will show increase in neutrophils and you will be strong enough to go out once you get your transfusion.

Hi Birgitta - I know you are in Europe but thought since the trial involved multiple centers it might be worth a shot. In any event I am grateful for your insights and - you are in my thoughts and I wish you peace. Paul

Dear Birgitta,

I have always been so impressed with your calm strength and conviction to be your own advocate, seek the best treatment, and share what you have learned with the rest of us on Marrowforums. You are a great inspiration and model for dealing with a serious illness.

Often the fight we are engaged in seems like an uphill battle. But in the big picture, treatment of blood disease is improving greatly. We are living longer healthier lives, some of us are even being cured. And I am convinced that we owe this not only to doctors & researchers, but also to patients like you, who research & advocate for themselves, and reach out to connect with other people fighting similar battles with their health. As you fight for yourself, so too have you fought for us.

Sweden must be beautiful this time of year, especially this year with the bright sunshine and snow. Many of my ancestors are from there, and I hope to visit someday. I wish you and your family peace and health. May you again find strength to venture out for a walk in the crisp winter air.

Thank You

Neutropenia
 

Hi Mseth, Paul and Kevin!
Mseh. My neutrophils did really increase a little but now the drug I am taking to prevent lung oedema (Spirolactone) has lead to that i have to drink a lot because I am dehydrated.

Paul. No we can't participate in that trial. Then I have had so severe bone marrow fibrosis since dx that I am not accepted for most trials.

Keven. Thank you for the kind words. As you know I am now 75 yo and have accepted that I can't live long with this severe disease. Yes Sweden is beautiful during winter but this year we are still waiting for the real winter.
Kind regards
Birgitta-A

Birgitta,

It's great news that you have more neutrophils, even if they went up only a little. Keep up the good work.

Staying hydrated should be the easiest thing in the world, but many people don't remember to drink enough simply because they don't feel thirsty enough. They just have to remember to drink like they remember to take their pills.

I find that I sip more while working if I have flavored water handy rather than plain water.

Skål!

Neutropenia
 

Hi Neil!
You know I drink a lot every day (about 4 l) but I got too much Spirolactone. A dietist in a video said that leukemia patients should drink 2 l more than the usually did and I have done that.

Now I take 25 mg Spirolactone instead of 50 mg and hope I will get better.
Kind regards
Birgitta-A

Hi Birgitta,

So good to hear that the neutrophils increased, hope you will continue to do better, with the reduced dose of medicine now.

Please take good care of yourself.

Neutropenia
 

Hi Mseth!
Thank you for the kind words! You know last evening my temp was 38.4. Since I have to go to the ER if it is 38.5 twice with one hour apart I packed my things and controlled my temp every time I was awake during the night but the temp never reached 38.5.
Kind regards
Birgitta-A

Hi Birgitta,

Sorry you have above normal temp last night, is it because of an ongoing infection?Hope you can get it down soon, as it must make you feel uncomfortable. Good it did not go upto 38.5, rushing to ER is not pleasant.

My mothers doctor has given standing instructions that if she has temp above 38, she must be admitted to hospital for IV antibiotic. This has happened two times since her MDS dx, she stayed 3 days in hospital both times.

Regards.

Neutropenia
 

Hi Mseth!
I don't know why I have fever - now I have had neutropenic fever four times. They never found the infection focus though the took all kind of tests. The important thing is that the antibiotic helps.
Kind regards
Birgitta-A

Birgitta,

Sending good thoughts your way and hoping the antibiotics keep the fevers down.

Karen

Neutropenia
 

Hi Karen!
Thank you for the the good thoughts! You know since 01/13 when I stopped taking antibiotics I only take Fluconazole for candida in the mouth. My neutrophils still keep the infections away.
Kind regards
Birgitta-A

Sorry
 

Sorry! I meant that I stopped taking antibiotics 01/6.
Birgitta-A

Sorry - I misunderstood. Glad your neutrophils are working!

Hi Birgitta - My thoughts and prayers are with you. With so many people all over the worlds praying and wishing for good health things will work out. Please stay strong. You are a fighter and I so hope that you will get out of this phase and soon a new treatment or cure will come out for this dreadful disease.

Neutropenia
 

Hi Joesmith!
Thank you for the positive thoughts and prayers :)!

You know after all kinds of chelating drugs (drugs against iron overload) during almost 9 years I have got cardiomyopathia (the heart is damaged). I have received 226 units of blood. I am very tired and have asked my doctor if I can continue the treatment (tx once a week) in my home.

As I have written before I am 75 yo and I have been aware of the prognosis since dx May 2006.
Kind regards
Birgitta-A