Dad with MDS

[sophia68]

Hello everyone,

My dad will be 80 years old in November of this year. He was diagnosed with MDS over a year ago (maybe two) and has been receiving weekly shots first with aranesp then procrit. Since dad has been on the procrit his level has not risen above 7.5. His hemo prescribed treatment with Dacogen which he received a couple of weeks ago. A few days after he received the treatment his hgb dropped to 5.1. He was admitted for a blood transfusion. After the transfusion his hgb went up to 9. A couple of days after, he was having fever/sweats/chills. He had a fever just above 102. On Wednesday 7/30/08, his hemo admitted him to the hospital for neutropenic fever/possible sepsis. His counts dropped. He was given antiobiotics. His fever subsided. All blood tests/cultures came back negative for any bacterial growth. He was given another transfusion as his hgb dropped to 6.1. He started spiking fever again, he is very congested and seems to have caught the flu. Hemo has ordered chest xrays. His WBC is 1.2, hgb 8.4.

I’m wondering if my dad is too old to withstand the Dacogen/chemo?

Does anyone have a family member close to my father’s age with MDS?

[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

[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

[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?

[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

[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.

[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

[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 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.

[Marcla]

Sophie… Ralph reacted well to his first Dacogen treatment. No change in appetite, just a little more fatigue which increased as the week went on. The day of his first treatment, Ralph’s HBC was 8.4 and his platelets 11. He received a platelet TX that same day and a RBT TX (2units) the next.
He also has been dealing with very low neutrophil counts which are a concern. (.89 on Aug 4.) This is the area that has not responded well to the Dacogen.
I feel so frustrated trying to understand all the terms of MDS. Ralph is being treated within the UPMC Cancer Group and I feel his doctor is very good with knowledge of his diagnosis.
I’ve gained so much information from this forum…. and hope all the responses you are receiving are encouraging. Marla

[Marcla]

Hi…Me again. Ralph has only been hospitalized twice. Once while we were in Florida when we had to use the emergency room to get his platelet and RBT’s. The second time was early April with a flu infection. Ironically, the transfusions he received while confined are the last ones he has needed…. Marla

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