...and so it starts....

[Annettec]

My mother (78 yrs old) was diagnosed with MDS 8 months ago. This is her 3rd bout with cancer. Colon cancer 25 yrs ago, breast cancer 2 yrs ago and now this.

At time of diagnosis, her blasts were 13% - last bone marrow biopsy 2 mts ago showed improvement (not sure of exact result....waiting to see her oncologist...)

She started on Vidaza immediately after diagnosis and has, so far, tolerated it very well. Until this past week, everything was going well.....and we were all getting used to her new normal. Last week, she developed a cold--- started a fever so was admitted to hospital and has been on high grade antibiotics since. Fever is gone, but white blood count is very low so they are keeping her in isolation. Yesterday, she developed sore throat/ear and they discovered her glands were swollen on one side of her neck. She is getting more worried by the day..... she's a very active and social butterfly so being in isolation during a miserably cold and stormy week in Eastern Canada has not helped her disposition one bit.

Like all of you out there, looking for encouragement and more information.

Since day 1, I have been praying and hoping that my mom is like the gentleman I met during one of her 1st Vidaza treatment that was into his 4th yr and still doing very well.....He was the same age as well, so it was encouraging to see.

During her last app't at her oncologist ( 2 mts ago), he was very pleased with her response to Vidaza.....in fact, her doctor said that she was doing better than all of his current patients.....

I am new to this forum.... apologies for rambling on.... and looking forward to hearing from you...

Greetings to all from Eastern Canada!
Annette

[Birgitta-A]

Hi Annette!
Good that your mother is responding so well to Vidaza!

Too bad with the cold that decreased her WBC. Her WBC were perhaps low before the cold and all counts can decrease every time we get an infection.

When the most important type of WBC - the neutrophils - is very low we get infected by our own bacteria, virus and fungi.

You have to keep a record with all counts all the time. As soon as my neutrophils are very low (less than 1.0 for me) I have to take injections for the WBC called Neupogen.

Since I had neutropenic fever the first time 2007 I live like I have neutropenia (low neutrophils) - try to avoid all kinds of infections, control my temp every evening and so on.

http://www.oncolink.org/coping/article.cfm?c=358&id=970
Kind regards
Birgitta-A
75 yo, dx MDS Interm-1 2006. Supportive treatment with txs, Neupogen for low WBC and drugs for iron overload until 2010. Thalidomide 2010-2013 and Revlimid 2013-2014. Now waiting for home care because my HGB is 95 though I receive 2 units of blood every week and my neutrophils are only 0.7 though I take Neupogen every day.

[Annettec]

Tks so much for your response. You are most definitely an inspiration.....I read your profile and unless I misread, you have been fighting MDS inter 1 since 2006? That's soooooo encouraging.....

My mother has not had an easy life ... But she has a lot of faith and although small in stature, she is a tough cookie!

She has always had a lot of energy and even at 78, she can outlast me! Since her diagnosis, she has slowed down some, but still more active than people half her age.... Hoping that can continue!

If her blasts were at 13% at diagnosis, I am wondering what the number should be to indicate remission...she had a bone marrow biopsy last month and although we know there was an improvement, I don't know the number (yet). Any info would be greatly appreciated

[Annettec]

Tks so much for your response. You are most definitely an inspiration.....I read your profile and unless I misread, you have been fighting MDS inter 1 since 2006? That's soooooo encouraging.....

My mother has not had an easy life ... But she has a lot of faith and although small in stature, she is a tough cookie!

She has always had a lot of energy and even at 78, she can outlast me! Since her diagnosis, she has slowed down some, but still more active than people half her age.... Hoping that can continue!

If her blasts were at 13% at diagnosis, I am wondering what the number should be to indicate remission...she had a bone marrow biopsy last month and although we know there was an improvement, I don't know the number (yet). Any info would be greatly appreciated

[Birgitta-A]

Hi Annette!
You know you ask really difficult questions though you are a new member - perhaps you won't understand the answer now but you will hopefully learn something.

Remission due to therapy in MDS:
http://www.bloodjournal.org/content/96/12/3671.long

In Table 1 you can read:
1. Complete remission (CR)
Bone marrow evaluation:
Repeat bone marrow showing less than 5% myeloblasts with normal maturation of all cell lines, with no evidence for dysplasia.* When erythroid precursors constitute less than 50% of bone marrow nucleated cells, the percentage of blasts is based on all nucleated cells; when there are 50% or more erythroid cells, the percentage blasts should be based on the nonerythroid cells.
   
Peripheral blood evaluation:
Hemoglobin greater than 11 g/dL (untransfused, patient not on erythropoietin)
Neutrophils 1500/mm3 or more (not on a myeloid growth factor)
Platelets 100 000/mm3 or more (not on a thrombopoetic agent)
Blasts 0%
No dysplasia*

2.  Partial remission:
All the CR criteria (if abnormal before treatment), except:
Bone marrow evaluation: Blasts decreased by 50% or more over pretreatment, or a less advanced MDS FAB classification than pretreatment. Cellularity and morphology are not relevant.

Blast cells are immature cells and we should have immature cells in our bone marrow and less than 55 is normal.
Kind regards
Birgitta-A

[JordanN]

Hi, Annette!

I'm so sorry your mom has been through so much and is having some difficulties now, but I just wanted to let you know that there is always reason to hope for the best!

My dad is 80 yrs old and was diagnosed with MDS RAEB-2 11 months ago and given a very grim prognosis given his initial blood counts, marrow findings, and age. He has had no positive responses to any treatments (vidaza- no response, neupogen - no response) and has, in fact, had toxicity issues with all medications tried. He has had several strong adverse transfusion reactions and appears refractory to platelet transfusions. His ability to do the active things he used to enjoy is gone, but despite this very frustrating and dire picture, he is still staying remarkably stable. His blood counts while low are staying within a relatively safe range. His ANC is never above .2, and yet, he somehow manages to avoid getting infections. His Hgb is low, and he is limited in what he can do, but he doesn't have any pain and has friends and family that are able to bring fun times to him. We are well aware that all this can change very quickly, but we are really happy that he is doing as well as he is given some pretty bad factors. He is comfortable and stable and may be able to continue this way for some time.

It sounds like your mom has done really well on Vidaza, is still able to fight infections with a little antibiotic help, is able to do much of what she enjoys, and possesses a great attitude with a sweet daughter! As you say, we have to learn to live a "new normal," but it sounds like your mom has a lot of the ingredients for success and lots of reasons to be hopeful!

I wish you and your mom all the best and will be hoping and praying for much happiness and health for you both.

[Birgitta-A]

Sorry! I should have written that less than 5% blast cells in the bone marrow is normal.
Kind regards
Birgitta-A

[Annettec]

Thanks so much Jordan for your message and words of support. I am new to this and already feel so comforted in knowing there are many of us out there.

Sounds like your dad is also rallying well. And I bet it has a lot to do with the wonderful support he is receiving. Although at times, we all feel helpless, I know my mother is feeling the love that surrounds and sustains her through this battle. God only knows, she has had many battles in her life and has fought them all with a lot of dignity and with resolve. Her faith sustains her the most.

Since I live 3 hrs away, I am trying to give her as much support as possible. I see her at least once per month, typically during her week of treatments. Her appetite is not the best, and was even worst during her stay in hospital...so for a treat, I got her favorite restaurant to deliver Sunday dinner today! I was told by the nurses that she felt like the bell of the ball... . Well deserved, she has always placed everyone's needs above her own.... I figure it's time to spoil her as much as possible.

Blessings to you and your dad. It's one day at a time....so let's live and love to the max!

Carpe diem
Annette