Dacogen Tx

[Susan L]

Hello - I am new to this site but have received much information and help. I wanted to ask if anyone that has taken Dacogen had experienced extreme fatigue? I am trying to work as I get treatment but the week afterwards is so hard I can barely make 1/2 day. Any comments would be helpful. Thank you.

[Debbie W]

My husband completed his second cycle of Dacogen near the end of June. He has said the worst side effect is feeling tired and we know also that his counts should hopefully bottom out this week as they did with the first round. But he is also on a trial of decitabine and tretinoin.

The tretinoin gives him headaches and he is also nauseous during that time, not sure if he feels the need to rest more because it is the week after the decitabine or the effects of the tretinoin.

http://clinicaltrials.gov/ct2/show/NCT00382200

[Susan L]

Thank you for your reply. I also get Aloxi for nausea and Zefrin (?spelling) on alternating days before my Dacogen. I am not familiar with the other two drugs yours husband is on. I had ATG treatment 7 years ago at the NIH and did great until a few months ago. Then I went to a new oncologist after reading that there were new options for our disease. I am RAEB w/excess blasts and chromosome abnormalities. I hope your husband does well.

[Debbie W]

You started the same time as my husband, his third cycle starts on 7/19 and he had his two month BMB today, waiting for results. His first BMB done locally (end of April) showed excess blasts, their reading was 10% and then Sloan looked at the slides and said 15%, the BMB done before treatment at Sloan the third week of May showed 13%. His initial hemoglobin in April was 6.6, today it was 11, and the doctor feels that the treatmet is working.

He is fortunate to work from home so he can alter his hours a little to accomodate for excess fatique, but in a another post I read that you are receiving 40 mg, he receives 20 mg each day for five days??? They are looking to do a transplant within the next few months, we'll see what today's BMB shows and I'll post the results later the week.

We should definitely keep in touch

[Susan L]

Hi - What a coincidence of starting the same time. My treatment I think I said also starts again on ther 13th. Yes I do get 40mg x 5 days. Your husband must have a sibling for a match or another relative for a bone marrow match? When I first got ill 7 yrs ago there was not a match for me, but I was fortunate enough to go to NIH for treatment. This time I am fortunate to have found a great practice that is giving me this treatment. I was with another center and they were unable to come up with anything to help me, so you do have to be proactive. Yes we do need to compare notes and I wish your husband the best. Let me know what his counts are, I will have mine done again on the 19th.

PS I just read your previous postings and that is so wonderful that your husband has a sibling match. I put your name in my buddie list so I can keep up with you both. Best of luck to you both.

[Debbie W]

April when he was admitted to the hospital for low hemoglobin level.

WBC - 3.5, HGB - 6.2, PLT - 191

5/24 - day of first treatment

WBC - 3, HGB - 7.5, PLT - 200, ANC 1.1

7/13 numbers

WBC - 1.8, HGB - 11, PLT - 72, ANC .3

He had one unit of red blood after the second cycle, he had more in April and May.

No wonder you are exhausted as you are getting twice the amount.

[Susan L]

Thank you for the numbers. I will get mine on Monday. Not sure why the amount is so different between us. (20mg vs 40mg) I'll ask. I do see that everyone is getting tired, but I will deal w/that - its just the unknown about the treatment that gets to ya. Thank you for your replies. Wishing you both the best.

[Debbie W]

My husbands blood counts continue to climb, but the bone marrow biopsy done after the second cycle told a different tale. They have cancelled the third cycle and want him to start induction therapy soon.

Wishing you the best next week.

[Susan L]

I am so sorry the counts did not improve. Atleast there is a match and that will happen and he will be better. I will keep you all in my prayers. Let me know how you are doing.

[Debbie W]

Thanks Susan, we all expected better results based on his blood count numbers, even though we know that biopsy is more important.

These were the numbers on 7/16, but I suppose the blood counts and blasts counts can be increasing at the same time???

WBC - 2.5, hemoglobin - 11.3, platelets 111, ANC .53

Unfortunately this happened late yesterday afternoon so I guess we'll have to wait until Monday to ask any more questions.

I hope that your week goes well, or more importantly the following week or two, also I still would be interested in hearing about the 40mg vs. the 20 mg if you have time.

[Susan L]

I will let you know what I find out about the dosage. Keep your hopes up and things will go well. Do let me know what the biopsy said. The blasts cell counts can still be increasing. Take care - I will write next week.

[Debbie W]

Thanks for the reply and it will be interesting to see what they say about the dosage, still confused about the blood and blast counts and posted the quetion in the question forum for any additional feedback.

Best of luck!

[Susan L]

Hi - Had my treatment today. I asked about the Dosage and my nurse said it is calculated according to height and weight. BMA - body mass average - I am 5'8" and (regretfully) 170 + pounds. My husband and I quit smoking in Feb then this happened, so the pounds came on. Anyway, my nurse said that I was dehydrated that is why I have been so dizzy. It has been very hot. I hope you both will do well. The only thing I know is that the blasts can continue to increase if the disease is still progressing. When does your husband start getting ready for the BMT? Please keep letting us know how things are going. I wish you both the best.

[Debbie W]

Thanks for the note about the dosage which makes perfect sense, my husband is 5'11" and now weighs about 172, his normal weight had been around 185. We are frustrated as the doctor has not returned our phone messages so there is nothing planned yet

We'll be on the phone first thing in the a.m. and I'll update as we go along. Let us know how you do with the treatments, hopefully you will not be as tired and will have a good response.

[Susan L]

I would call first thing in the morn - and more till they answer. That is one of the most frustrating things - Wishing you both the best. I will let you know how this treatment goes. So far - so good. (still tired)

[Debbie W]

She called back this morning and he is scheduled to start induction therapy early next week - it was a long weekend.

I hope that this treatment works for you, are you scheduled for another BMB after this treatment? Sorry I do not want to be intrusive, just want you to be well

Thanks and best to you in this cycle.

Debbie

[Debbie W]

Just a note to send you some good thoughts, after further discussions I have a better understanding (I think) of the blood and blasts counts. My husband will be admitted on Monday for the induction therapy and then hopefully to transplant.

Warm regards,

Debbie

[Susan L]

Hi - You're not being intrusive at all. No I am not scheduled for a BMB again till no clue when. I asked and Doc said not for awhile. I have had atleast a dozen biopsies in the past 10 yrs. He said next would be a blood test called JAK-2 which I have not really looked up yet as to what it tells. I am hoping this treatment does good for me. I get meds for nausea but it really is strong for some reason this time. Oh dwell, can't have everything. Hope your husband is holding onto his patience - the waiting is so hard. Let me know what the induction is. Wishing all the best.

[Neil Cuadra]

The JAK-2 test is a molecular test of your blood to determine if you have a mutated "Janus kinase 2" gene that would indicate a myeloproliferative disorder (MPD).

[Susan L]

Thank you.

[Debbie W]

Thanks, you just never know if you are intruding or not. Hoping that this treatment works for you, especially since it appears you are receiving more than some people. As I mentioned in my post about about blood/blast counts the decitabine did appear to be working at some level, so hope that the 40 mg does the trick, even if it makes you nauseous this time

We're trying to get ready for a month away from home and hoping that it works!

All the best for the coming week when the fatigue sets in, maybe it will be a trade off with the nausea this time. Looking for the positive

Best to you,

Debbie

[Susan L]

Finished my week and we will see what happens. I have faith that this will work atleast for awhile. I wish you and your husband all the best for the transplant. I understand it will be rough, but you are in Gods hands. Best to you both, and let me know what goes on. I will keep you both in my prayers. PS My husband talked with the doctor during my last treatment, and the doc said that these meds can go either way and so far it looks like I am doing fine. Next treatment is Aug 16th, and I am scheduled for labs and the doctor and treatment that day. Will keep you informed on how things are.

[Debbie W]

Hope all is going well for you, although this is probably in the middle of the low point for you, my thoughts are with you.

It has been a hectic week for us, tonight is the last night of treatment, so we're just wating for the low point to start the end of this week. They had a slow start with placing the central line and the chemo was delayed for a day, but at least he has tolerated the first week well, lots of card and game playing in addition to the laps around the floor. The doc said it should follow a similar path as the decitabine in regards to the lows, so that will be the end of this week, hopefully you will be recovering at that point. Will check in a few days and hope you will be recovering.

Best regards,

Debbie

[Susan L]

Hi - You are right - I'm at a low point. Very fatigued and legs hurting so much. Not quite sure why my legs are hurting so much. Glad you both are hanging in there and do let me know how things are going. Keep the spirits up - thinking of you both. Susan

[Susan L]

Hi Hope you and your husband are doing good. I have not been feeling good at all. Just very tired and hurting a lot. All my joints and legs. I think this is a side effect to the dacogen. Dont see the doctor till Aug 16th. Take care.