Neutropenia

[Birgitta-A]

Hi All!
My poor bone marrow is now very tired. X-mas I spent in hospital due to neutropenic fever and erysipelas. I got antibiotics iv 3 times a day. My neutrophils increased from <0.1 to 0.1 though I received a drug like Neupogen every day. I know that I can't manage long with so low neutrophils so I control my temp and wait for next hospital visit.

I wish you all a calm new year!
Birgitta-A

[Chirley]

I'm sorry to hear that you are no longer responding to treatment. You have done very well for many years on supportive care and then thalidomide, Revlimid and prednisone.

This disease does sometimes hold some surprises though and you may be surprised and rally through this crises once again. I wish you all the best and hope that you can pull through this time too.

Rest well, my friend.

Many hugs.

Chirley

[Birgitta-A]

Thank you Chirley!
Birgitta-A

[bailie]

Birgitta-A, we are with you. You have provided so much for us. I wish you the very best.

[Birgitta-A]

Thank you bailie!

I wish you the very best too!
Kind regards
Birgitta-A

[maggiemag]

Birgitta, do I remember correctly that certain drugs like Vidaza are not available where you live? Are there any trials that you could qualify for? When was your last marrow? Yes, I am full of questions! You supply so much technical knowledge on this forum; we need you around for a long time.
Mags

[Hopeful]

Birgitta, I am so sorry to hear this news! You are such a wealth of knowledge and inspiration. I will pray that the new year brings you a "second wind". Know you are loved.

[Marlene]

I hope you are able to kick this infection and rebound soon. Will be wishing for speedy recovery for you.

[Sally C]

Dear Birgitta,
I always read yours and Chirley's posts as they are always so knowledgeable, informative, and courageous. You both are so strong and resolute in your battles with these diseases as well as concerned and compassionate for all those on the forums. Keep it up - I know you'll both win these battles as well.
I wish you and Chirley the best of wishes in this New Year. Keep the faith!!
Thank you both soooo much!
God Bless,
Sally

[Cheryl C]

Hi Birgitta - I'm so sorry your neutrophils have dropped to a dangerous level. Like everyone else on this forum I want to express my appreciation for your interest in all of us and for all the knowledge and wisdom you share with us. You have shown me that its possible to live and to help others for much longer than the statistics show, and that has been very encouraging for me personally.

I wish you a speedy recovery. I know from my own experience that there can be sudden unexpected jumps in neuts and I truly hope that is the case for you. You are in my thoughts and prayers.

[slip up 2]

Birgitta Stor Vacker Dam.....

Thank you for all your kindness and wisdom.....wish you well.....

Kate

[kyis]

I too am sorry. I was in the hospital last year over new years with neutropenic fever etc. It was a scary week.
I wish you the best.

[JordanN]

Dear Birgitta,

I'm so sorry to hear your news! You've been there for so many of us and have amazed us all with your knowledge, strength, and compassion, and we are all thinking of you and wishing you all the best for a quick recovery from this current illness and a happy year to come! Sending lots of hugs your way!

[Susan]

Birgitta, I have my finger crossed for you that your count will improve soon. I like what maggiemag wrote about trying to find a med that may help. I just hope that wouldn't require travel away from your city.

Looking at my old posts here I came across and old entry about my ANC being 0.3. Not as low as yours but it did go back up to safer range and I had since forgotten it was that low. I hope you recover and that the lowest counts will become but a memory from the past.

[joesmith]

Originally Posted by Birgitta-A

Hi All!
My poor bone marrow is now very tired. X-mas I spent in hospital due to neutropenic fever and erysipelas. I got antibiotics iv 3 times a day. My neutrophils increased from <0.1 to 0.1 though I received a drug like Neupogen every day. I know that I can't manage long with so low neutrophils so I control my temp and wait for next hospital visit.

I wish you all a calm new year!
Birgitta-A

Hi Birgitta - I am saddened by your news but also hopeful that you will fight your way out. Have you considered Vidaza followed by SCT? You have and will continue to be a beacon of hope for all of us here.

[DanL]

Birgitta,

As with everybody else on the forum, I am hoping for your speedy recovery.

[mausmish]

Birgitta,

Sending healing thoughts your way! You've been such an inspiration for all of us here. I'm sorry to hear your recent news. Wishing you the best always.

Karen

[Barbara K]

Hi, Birgitta--So sorry to return from winter travel to see this news from you. I, too, will be holding you in my thoughts. Barbara

[Birgitta-A]

Hi All!
Thank you for the very kind words !

To those who asked about the possibility to receive Vidaza I will answer that Vidaza isn't approved in EU for low risk patients. My dr is a specialist in Vidaza and wrote his dissertation about Vidaza. He should prescribe Vidaza off record if he thought that Vidaza would help me - Thalidomide and Revlimid (very expensive) are not approved for my type of MDS either but I got those drugs. I have had very severe bone marrow fibrosis since dx.

I have never wanted a SCT due to the risk for complications. I am 75 yo and have lived a good life. I am very thankful for that.
Warm regards
Birgitta-A

[Neil Cuadra]

Birgitta,

You know from the outpouring of messages here how much you are admired in these forums.

Ruth and I are as concerned as everyone else, but we have confidence in you and your doctors, that you'll eliminate the infection and do whatever is needed to get your neutrophil count back up.

It's a new year and a good time to wish you the best of luck.

[Birgitta-A]

Hi Neil!
You know that I like Marrowforums very much - it's an interesting forum where we get important info and the members care for each other .

I will thank you and Ruth very much for Marrowforums!
Warm regards
Birgitta-A

[Mseth]

Dear Birgitta-A,

Hope you will be able to find the right treatment to get your neutrophils count up.

Thankyou for all the information and support you have been to everyone here.

Wish you a very happy New Year.

[Birgitta-A]

Hi Mseth!
You know I am already taking a drug like Neupogen every day but my bone marrow isn't responding any longer. Now I stay at home and only take a walk once a day. I dare not go to shops etc so my daughters do the shopping.

The problem is that with neutrophils as low as 0.1 my own bacteria, virus and fungi can give infections. We follow the counts every week.

Hope you and your mother will have a peaceful new year!
Kind regards
Birgitta-A

[Mseth]

Hi Birgitta-A,

It is wise to stay away from possible infections.

When my mother took prednisone over 2 months, her white cells and neutrophils became very high temporarily. Can a low dose prednisone help with your neutropenia, if neupogen is not working well?

She had low grade fever for several months after prednisone was tapered, it did nothing for her Hb as well. She continues to be tx dependent.

Thanks for the new year wish.

[Birgitta-A]

Hi Mseth!
You know I have been treated with Prednisone - initially 30mg/day - until I got neutropenic fever 12/24 2014. We hoped that Prednisone should increase my counts when Revlimid stopped working. As you know Prednisone and similar drugs increase the risk for infections so now I only take a drug like Neupogen and antibiotics.
Kind regards
Birgitta-A