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  #1  
Old Wed Nov 26, 2008, 11:36 PM
Francine S Francine S is offline
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Smile Vidaza for my 85 yr old mother with MDS?

Hi,
I'm a new member who's seeking info and support as I try to help make treatment decisions for my 85 yr old mother who was diagnosed with MDS in June 2007 - although she only got a bone marrow biopsy 2 wks ago and on 12/2/08 we'll get details on her subtype and prognosis. Since June 2007 she's been on Procrit with only occasional transfusions but in the past few months has had to get more frequent transfusions, as her hemoglobin doesn't stay above 8.0 for more than 1-2 wks. Her hemotologist recommends starting chemo, probably with Vidaza - will know which treatment I suppose after bone marrow biopsy results. While we had hoped to hold off on chemo, it seems like this is her only option. Just wondering how elderly people tolerate side effects of Vidaza and other chemo agents for MDS and how long it takes for these agents to show efficacy, if appropriate agent for that subtype. Birgitta-A's 11/5/08 response to RebeccaLeigh was informative, thank you! Any other first hand experience or insight re. chemo in elderly patients with MDS would be greatly appreciated.
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Francine S: My mom, 85 yrs old, prelim diagnosis of MDS ~ June 2007. Nov, 20, 2008 BM biopsy results confirm MDS: RCMD subtype, 3% Blasts, Hypercellular marrow, approx. 70%; no chromosome abberations; transfusion dependent.
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  #2  
Old Fri Nov 28, 2008, 05:58 AM
Birgitta-A Birgitta-A is offline
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Mother with MDS

Hi Francine,
Here is an abstract from the hematology conference in San Fransisco Dec 2008 about Vidaza and elderly patients:
http://ash.confex.com/ash/2008/webpr...aper10560.html

Hope your mother will respond to the treatment her dr choses for her!
Kind regards
Birgitta-A
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  #3  
Old Sun Nov 30, 2008, 11:32 PM
Francine S Francine S is offline
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Smile Birgitta-A: Thank you!

I really appreciate your sending me the link to this abstract. This definitely gives me and will give my mom hope that Vidaza may give her a few more years. You are a great resource of information. Thanks so much!
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Francine S: My mom, 85 yrs old, prelim diagnosis of MDS ~ June 2007. Nov, 20, 2008 BM biopsy results confirm MDS: RCMD subtype, 3% Blasts, Hypercellular marrow, approx. 70%; no chromosome abberations; transfusion dependent.
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  #4  
Old Mon Dec 1, 2008, 05:23 AM
Birgitta-A Birgitta-A is offline
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Vidaza lower dose for elderly patients

Hi Francine,
You know my dr (Grövdahl), who is one of the authors of an abstract about Vidaza, has told me that no one really knows the optimal dose of Vidaza. There are many clinical trials with different doses. 75 mg/m2 seven days in a 28 days cycle is too much for many patients.

A lower dose five days in a 28 days cycle can give better results and less adverse reactions . The patients in this study had got aggressive treatment with chemo before the got Vidaza but the results can probably be applied in patients that only get Vidaza.

"The initial dose of azacitidine (Vidaza) was 75 mg/m2 but as four of the first five enrolled patients developed grade 4 cytopenia, the starting dose was lowered to 60 mg/m2, and was allowed to be reduced to 45 or 30 mg/m2 to avoid severe cytopenias. The mean dose of azacitidine was 54.3 mg/m2."

http://ash.confex.com/ash/2008/webpr...Paper6836.html

Good luck!
Kind regards
Birgitta-A
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  #5  
Old Mon Dec 1, 2008, 05:14 PM
knstone knstone is offline
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Lower Dose Vidaza

Hi Francine,

Brigitta is correct, the dosage for Vidaza can and is often reduced depending on the health of the MDS patient.

I recently started on a 3 day dose of 50mg/m2, this is only 40% of a "5 day dose schedule of 75mg/m2/day". The 5 day dosage is gaining in popularity and is working for some MDS patients. My dosage was started low due to my low platelets and bone marrow cellularity (10-15%), my doctor talked to several other MDS center of excellence doctors for ideas on the dosage.
Celgene personnel can help find other doctors to consult with on Vidaza dosages.

I've talked to a lady in her 70's who is doing great on a 5 day cycle, and older gentleman is doing great on the same 5 day cycle.

I will start a 5 day dosage next week since my counts have held up well.

Vidaza has really helped many MDS patients, keep a positive attitude and encourage your Mom.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #6  
Old Tue Dec 2, 2008, 11:48 AM
Eileen Eileen is offline
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Thumbs up vidaza for 85 yr old Mom

Hi Francine.
I`m 73 & have been on vidaza for 15 months with excellant results.
Its now 5 days iv with no problem,at first it was transfusions every few wks. but since vidaza none. at first it was every 28 days for 7 days in stomach .did`nt feel very well at first , but that did`t last .it took about 4 months to see results
used procrit when needed .
now use aranes.but not very often ,about once a month.
I prefer iv maybe because i`m tiny ,many people do very well in stomach
good luck to your Mom,vidaza is really such a blessing.
I feel great ,went from 8 hmg to most of the time in the 12.some thing.
God bless you both,
Eileen
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Eileen.72,dxMDS 2007.currently on vidaza,procrit & neuprogen.
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  #7  
Old Tue Dec 9, 2008, 11:19 PM
Francine S Francine S is offline
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Vidaza dosing

Quote:
Originally Posted by Birgitta-A View Post
Hi Francine,
You know my dr (Grövdahl), who is one of the authors of an abstract about Vidaza, has told me that no one really knows the optimal dose of Vidaza. There are many clinical trials with different doses. 75 mg/m2 seven days in a 28 days cycle is too much for many patients.

A lower dose five days in a 28 days cycle can give better results and less adverse reactions . The patients in this study had got aggressive treatment with chemo before the got Vidaza but the results can probably be applied in patients that only get Vidaza.

"The initial dose of azacitidine (Vidaza) was 75 mg/m2 but as four of the first five enrolled patients developed grade 4 cytopenia, the starting dose was lowered to 60 mg/m2, and was allowed to be reduced to 45 or 30 mg/m2 to avoid severe cytopenias. The mean dose of azacitidine was 54.3 mg/m2."

http://ash.confex.com/ash/2008/webpr...Paper6836.html

Good luck!
Kind regards
Birgitta-A

Hi Birgitta,
Thank you for this info on Vidaza dosing. I will speak to her doctor about this. I'm going to post a Reply to everyone in the next day or so with an update as I received my mom's bone marrow biopsy report and am studying this.
--Francine S.
__________________
Francine S: My mom, 85 yrs old, prelim diagnosis of MDS ~ June 2007. Nov, 20, 2008 BM biopsy results confirm MDS: RCMD subtype, 3% Blasts, Hypercellular marrow, approx. 70%; no chromosome abberations; transfusion dependent.
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  #8  
Old Wed Dec 10, 2008, 12:02 AM
Francine S Francine S is offline
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Smile Thanks for all your responses & update on my mom

First I'd like to thank all of you who responded to my first posting about my 85 yr old mom. The comments you made are all very helpful and encouraging. I commend all of you for seeking information and becoming knowledgeable about MDS and your treatments and for being advocates for your own health. I strongly feel that every patient needs to take charge of their health - ask questions of the physicians, seek to understand and form a partnership with your doctor. I hope I can do this for my mom.

I accompanied my mom to her last appt. with her hematologist/oncologist on Dec 2. Yes, he is recommending Vidaza, gave her patient literature and will meet with her again on Dec 23. He sounded like he was not rushing her into it, but when I had a personal phone conversation with him a few wks before this, he said that if my mom did not try chemo soon, he is afraid we would not have my mom around too much longer. Since October, it seems she is getting 2 units of blood about every 2 wks. Today, her Hemoglobin (Hgb I'll use) was down to 6.6 (it's been in this range before) so in 2 days they expect to have blood ready for another transfusion. The past couple of transfusions get her Hgb above 8.0 but not to 9.0. Only when her Hgb dips below 7.0 does she mention that she may feel tired and gets slight palpitations at times. Usually they get her in for transfusions before it dips below 7.0 but the Hgb seems to be falling more rapidly now and it's becoming more difficult to get blood matched.
I updated my signature with info from the BM biopsy report. I think I am encouraged that her subtype is RCMD, which seems milder than some of the other subtypes, but then again, I see she is transfusion dependent now. She continues to get Procrit every week but I don't think it's having any effect at all.
I plan to have a phone conversation with her doctor before her Dec 23 appt. From the postings I've read it seems that some patients have been getting transfusions for some time but I understand the dangers of iron overload and it sounds like the side effects of some chelators can be nasty. From the responses I've received, it sounds like Vidaza is worth a try and I will question her doctor about the dosing & regimen. I am just concerned how she'll handle the side effects at her age and if Vidaza does not work for her, then will the side effects from Dacogen be worse? (which I will read up on). I also saw postings about lenalidimide/thalidimide so I will read up on these meds as possible alternatives.
Sorry for this long-winded posting! I'm just trying to get myself up to speed so I can talk with her physician before 12/23.
Regards and Thanks to All,
__________________
Francine S: My mom, 85 yrs old, prelim diagnosis of MDS ~ June 2007. Nov, 20, 2008 BM biopsy results confirm MDS: RCMD subtype, 3% Blasts, Hypercellular marrow, approx. 70%; no chromosome abberations; transfusion dependent.
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  #9  
Old Wed Dec 10, 2008, 08:26 AM
Birgitta-A Birgitta-A is offline
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Mother with MDS

Hi Francine,
It is true that RCMD is a more mild type than others with more than 5 % blast (immature) cells. Next question is if your mother has any chromosome aberrations and if the answer is yes what chromosome aberrations?

Thalidomid belongs to the first generation immunomodulators – Revlimid (lenalidomid) and Actimid (only in trials) to the second generation. The two last drug have less adverse effect. Revlimid has good effect in about 75 % of the patients with the chromosome aberration 5q deletion and about 25 % of the patients without that aberration.

The researchers can’t decide yet if a patient will respond to Vidaza or if Dacogen will be a better drug for that patient. They are going to start trials to look at that question.
http://www.checkorphan.org/news/esai...stic_syndromes

Up to now Vidaza seem to be the better drug for most patients but we are all different and respond different at drugs.
http://abstracts.hematologylibrary.o...urcetype=HWCIT

Remember to control that your mother gets effective medication to prevent nausea. Best is a combination of Aloxi or similar drugs, dexametasone or similar drugs and Emend.
Kind regards
Birgitta-A
69 yo, dx MDS RCMD May 2006, transfusion dependent from dx, 75 units of packed red blood cells since dx, Desferal without any adverse effects since Aug 2007
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  #10  
Old Thu Dec 11, 2008, 10:54 PM
Francine S Francine S is offline
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Smile Mom with MDS - chromosome info

Hi Birgitta,
Thank you for your reply to my posting and the information. My mom's BM biopsy rpt states MDS "FISH" analysis showed "normal" results and stated that the analysis "ruled out numerical aberrations of 5q, 7q, 8 and 20q12". They looked at 200 interphase nuclei in this analysis.
The report also says that the normal cytogenetic findings put the patient in a "good risk category". However, the fact that she is needing 2 units of blood about every 2 wks now and her Hgb doesn't even reach 9.0 after the transfusions, makes me feel like she's at higher risk. Again, thank you so much for your insight. I will speak to her physician shortly.
Regards,
Francine
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Francine S: My mom, 85 yrs old, prelim diagnosis of MDS ~ June 2007. Nov, 20, 2008 BM biopsy results confirm MDS: RCMD subtype, 3% Blasts, Hypercellular marrow, approx. 70%; no chromosome abberations; transfusion dependent.
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  #11  
Old Thu Dec 11, 2008, 11:09 PM
Francine S Francine S is offline
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Exclamation Birgitta - one more question!

Hi Birgitta (again!),
I just re-read your signature info and see that you have received 75 units of blood since May 2006?? And I see you are also subtyped as RCMD, like my mom. May I ask you, what effect does each transfusion have on your Hgb, as in # of units resulting in what numeric (g/dL) increase? And from what pre-transfusion to post-transfusion Hgb level typically? Since you are a lot younger than my mom, I realize that her situation with Hgb and RBC count is a bit different. She of course is not very active so seems to be able to withstand lower Hgb levels. But today she said she did not feel very well (she's below 6.6 now - they couldn't get blood for her today - hopefully tomorrow). Have you found it more and more difficult to get blood typed for a good match? My mom's doctor says she is raising antibodies to the blood she receives so it's becoming harder and harder to find a good match for her. Last, at what level of serum ferritin did you have to start getting Desferal? I will be reviewing my mom's blood test results shortly - she got her iron levels checked when it was drawn this week.
Kind Regards,
Francine
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Francine S: My mom, 85 yrs old, prelim diagnosis of MDS ~ June 2007. Nov, 20, 2008 BM biopsy results confirm MDS: RCMD subtype, 3% Blasts, Hypercellular marrow, approx. 70%; no chromosome abberations; transfusion dependent.

Last edited by Francine S : Thu Dec 11, 2008 at 11:12 PM. Reason: Adding a question
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  #12  
Old Fri Dec 12, 2008, 12:42 PM
Birgitta-A Birgitta-A is offline
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Mother with MDS

Hi Francine,
Good that your mother doesn't have any chromosome aberrations ! I have 12p- and X-. 12p- is a good aberration but X- is not in the best group. Together they put me in the intermediate group for aberrations.

My transfusion interval has mostly been between 4 and 6 weeks but when I have been "prepared" for two small operations (one was a port-a-cath) I got more frequent transfusions. Aug 2007 I had neutropenic fever after fuor infections and all my values were very bad for a long time. I got many transfusions before I was OK.

One unit of packed red blood cells should increase the Hgb about 12 units - if my Hgb is 90 and I get two units of packed red blood cells the Hgb will increase to 114.

Then I have a lot of antibodies that gives haemolysis (the red blood cells are destroyed). I always get a drug similar to Prednisolone to prevent haemolysis together with transfusions. I had these antibodies from start and it has always been difficult to find blood for me - I leave blood for cross test the day before transfusion.

My dr thinks the ferritin level should be about 1000- but I read an abstract from ASH 2008 that a ferritin value over normal (250) could be bad for red blood cells. Unfortunately Desferal gives more adverse reactions if the ferritin level is so low.
Kind regards
Birgitta-A
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  #13  
Old Fri Dec 12, 2008, 09:23 PM
Margie Margie is offline
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Vidaza for my 85 yr old mother with MDS

Birgitta-A
I get a similar boost from the transfusion of 2 units of packed red cells. Unfortunately, they are gone in about 3 weeks, and I have to get more. I also have a lot of antibodies, but I continue to collect more as I have more transfusions. The blood bank sends me a little card occasionally listing them. Do you not ever get more as you continue transfusions? I had not known about the antibodies destroying the red cells; I just thought they could cause dome dangerous reactions to the blood. I also get some form of prednisone - decadron, I believe. Does your face turn red a day or two after the transfusion? I have wondered if it is a reaction to the blood or to the decadron. Thanks again for all the good info.

Margie
69 yrs. MDS since 2003. RA-All three lines. Blasts <5 No chromosome aberrations. Transfusion dependent.
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  #14  
Old Fri Dec 12, 2008, 10:39 PM
Chirley Chirley is offline
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Hello,

Isn't it odd how some people develop antibodies more than others. I've just had my 117th unit of blood and so far have developed an anti K antibody only. I'm surprised that I only have 1 antibody because the nurses aren't always very vigilant about either using a filter or using the filter for too many units (some are meant to be used for 1 unit and some for 2 units) or the one I hate most, flushing saline through the filter, after the blood has been given. That negates the purpose of putting the filter on in the first place.

I never say anything, I just sit there and am amazed at the lack of uniformity of practice amongst the nurses. Some are excellent and precise, others don't know but admit it and ask other nurses for help and others are so bad, with sloppy practice and they are very scary.(how easily an incompetent nurse could harm or kill you)

I also get a rise of 10 Hb for each unit of blood, and I've noticed that my skin and eyes get a yellow tinge to them at about 3 weeks which I've always assumed has been from the blood cells dying off. I also have a constant low grade itch but this increases at about 3 weeks as well. I have also noticed that my face and neck become quite red in the few days following my transfusion. I always thought it was because I am so used to being a horrible yellowy white color, that the Hb increase and resultant "pinking up" is a bit of a shock.

I have to go, the housework is waiting for me. No one in this house to do it, except me. (I tried to train my 2 dogs, but they wouldn't cooperate)

Bye
Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #15  
Old Sat Dec 13, 2008, 11:11 AM
Birgitta-A Birgitta-A is offline
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Autohemolysis

Hi Margie and Chirley,
Thank you for the kind words!

I don't think it is harder for my bloodbank to find blood for me now than when I started with transfusions - the blood is often only 4 days old so they perhaps know that it is more easy to find blood that is OK if they choose that kind of blood. I have never asked for the names of the antibodies.

Here is some info about antibodies and destruction of RBC:s:
http://www.aafp.org/afp/20040601/2599.html
As you can see: "Common acquired causes of hemolytic anemia are autoimmunity... Immune-mediated hemolysis, caused by antierythrocyte antibodies, can be secondary to ...transfusion reactions".

My face doesn't turn red - I don't think that could depend on Decadron.

If you, Chirley, have a yellow tinge it can depend on that you get more bilirubin in your blood in connection with hemolysis - bilirubin increases when the liver takes care of the Hgb from the destroyed RBC:s. Look at your liver tests to see if bilirubin is elevated.
Kind regards
Birgitta-A
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  #16  
Old Tue Dec 16, 2008, 11:30 AM
Francine S Francine S is offline
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Transfusion Discussion

Thank you Birgitta, Margie and Chirley for sharing your experiences regarding transfusions with me. Indeed, it does sound like everyone's body responds a little differently with respect to the level of antibodies raised against donated blood. I will ask my mom's doctor about decadron and prednisone to help combat hemolysis. Maybe this is the reason for my mom's Hgb increase to be relatively low with each 2 unit transfusion. I do not know details of her antibody response but have heard she is raising a lot of antibodies to the blood.
Birgitta, interesting to hear about your experience with serum ferritin. I will learn my mom's level this week when I speak to her physician.
Regards to all,
Francine
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Francine S: My mom, 85 yrs old, prelim diagnosis of MDS ~ June 2007. Nov, 20, 2008 BM biopsy results confirm MDS: RCMD subtype, 3% Blasts, Hypercellular marrow, approx. 70%; no chromosome abberations; transfusion dependent.
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