[sophia68]

Quote:

Originally posted by lynette:
Hi Sophia,
Blasts are immature cells. In Leukemia, there are too many immature cells and not enough funtioning mature cells. Without mature cells the body cannot fight infection, etc. The fact that the blood showed no blasts is good, however that does not mean that there are no blasts in the bone marrow. Before you start induction Chemo–contact a Center of Excellence to get a second opinion. There are several good treatments for the elderly sparing them the traditional Induction chemo. Many experts believe that Induction Chemo should be the last resort for someone over 70.
Lynette

Thanks for the information Lynette. My dad has a high percentage (65%) of ringed sideroblasts.

[sophia68]

Quote:

Originally posted by Marcla:
HI….
I’m new to the forum, but, I diligently follow the daily posts. So much of what I understand about this disease comes from the comments of the members. Your question was a perfect time for me to relate my friend Ralph’s experience with Dacogen.
Ralph will be 83 next month…. he was diagnosed with CMML in Oct. 2007. January 2008 he started Dacogen treatments. He gets treatments every 28 days consisting of five days of infusions. At the start of Dacogen, Ralph was receiving hemoglobin and platelet transfusions on the average of every two weeks. He has been transfusion free since April 08.

Today Ralph started his 8th series of Dacogen with no side effects from the drug other than extreme fatigue by the 5th day and thru that weekend. The doctor will do a bone marrow biopsy early next month. At that time he will decide what the future will be.

In Jan. Ralph’s PLT count 11 HBG.. 8.4
Aug.4th PLT ” 159 HGB.. 13.1

Hopefully, this will help you to feel age doesn’t seem to be a problem.. The prognosis on Ralph’s condition was not too optimistic and we feel blessed that he responded to the first treatment he tried. Hope your father gets past his bad experience and goes on to feeling much better….
Marla

Hi Marcia,

How did Ralph react to his first round of dacogen? Was he hospitalized at all?

Thanks.

[sophia68]

Quote:

Originally posted by Jo L.:
Marla –
Our doctor explains things to us in very simple terms, which we appreciate. It is easier to understand than words like “hypomethylating agent”. John’s bone marrow is not making enough good red or white blood cells. MDS is affecting the genes in the blood cells – there are ‘switches’ in the genes that are turned ‘off’ and Dacogen can turn those switches back ‘on’ again, so that more cells can be normal again. He compares Dacogen to a finger on that switch, holding it in the on position. It is not a cure, but I am hopeful that John can continue to stay at a good level until something else is developed. After reading the postings on this website, I realize in the past there weren’t many options for MDS patients. We must have faith that the cure is just around the corner.
Here is a link to the Dacogen website that may interest you. http://www.dacogen.com/consumer/about-dacogen/dacogen-works.aspx

John has not had a BMB in over a year and he is not really looking forward to another one. Our Dr. hasn’t mentioned it and John doesn’t want to bring it up. Too bad there isn’t a less painful way to get that information.

Jo

Hi Jo,

My father hasn’t had another BMB since his first one in June 2006. I’m wondering if it makes any sense for him to get another. After his first round of Dacogen he nadired, been having a very rough time and has been hospitalized for over a week. He also developed a sinus infection. He’s on Bactrim and Vancomycin. He declared he is not going through this ordeal again and does not want any further treatments of Dacogen. I need to find out what dosage of dacogen he was given. Maybe a lower dosage will not have the same nadiring effects…

[sophia68]

Quote:

Originally posted by Sister:
Hello,
I am brand new here.
My brother(54,in SF) was diagnosed with MDS last month. I am still collecting detailed information from him. Will share once I get them.

I have done a lot of research myself. For those people who are looking into bone marrow transplant, please go to http://www.marrow.org. Go to Patients/family in the site, there are TONS of information on each transplant center (e.g., how many tranplants were performed, on what disease, success rate after one year etc).

Sister

Hi “Sister”,

Here is an excellent booklet on MDS…

http://www.leukemia-lymphoma.org/attachments/National/br_1205868296.pdf

[sophia68]

Quote:

Originally posted by jga_socal:
Since the fevers/chills occured so soon after the RBC transfusion I have to wonder about the connection. If the xfusion caused the chills there are a couple poss explanations that I can think up.
1. The blood was not leuko-reduced. Leuko-reduction is where they filter out much of the donor’s white blood cells. Also, the blood should be irradiated, which is meant to reduce the population of ‘other’ impurities.
2. You dad has antibodies to the donated blood because he had blood transfusions sometime in his life. Transfusions 20 years previous for any reason could have resulted in remaining antibodies to certain HLA markers on donated blood products. This can be avoided with addition screening of the blood products.

Supportive case might be preferable. I sometimes wonder if these new drugs that only seem to be effective for 6-18 mos, actually serve to hasten the degradation of the marrow. I’d like to know if there is anyone who has had MDS for many years has also had chemo?
Jim

Hi Jim,

Thanks for responding and shedding light on possible causes for my dad’s fever. My family and I were wondering if that was a possibility, however, after further research into the side effects of the Dacogen, it seems more likely this was the cause.

That is my concern too Jim, that these new [chemo] drugs only hasten (of course depending on the individual’s unique case) the destruction of the bone marrow.

My dad received a TX on Saturday, his hgb went from 6.1 to 8.4. Today it is declining again and is currently 7.7. He’ll need a TX again soon.

[sophia68]

Thanks for replying Marcia. Sounds like Ralph is doing very well with the Dacogen.

I found my dad’s original bone marrow biopsy report and my dad has MDS-RARS which is apparently is low risk for transformation into AML.

I’m wondering if RARS is low risk, why does his hemo feel it is necessary to treat him with inductive chemotherapy? Maybe my dad is better off sticking to supportive care instead?

[sophia68]

Also, can someone explain to me in simple terms what role the “blasts” play in MDS?

These were my dad’s counts on Saturday 8/2/08 were:

WBC 1.0
RBC 1.70
HGB 6.1
MCV 97.7
MCH 35.9
MCHC 36.7
RDW 18.5
PLATELET 43
NEUTROPHILS 2.0
LYMPHOCYTES 96.0
MONOCYTES 0.0
EOSINOPHILS 2.0
BASOPHILS 0.0
BLASTS 0.0

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