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. :o

[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.

[Debbie W]

The docs say all is going according to plan, he had a bit of a rough day yesterday with a fever, but they were expecting this and were ready with antibiotics and antifungals. They did detect a baterial infection in his blood, but the broad spectrum drugs appear to be working as he has not a fever for 24 hours.

I logged on hoping to to hear that you are on the upswing as you are now a week ahead as far as treatment goes, but also knowing the bottoming process can last at least a week. Praying that all starts to improve over the next few days two for you :) It has been a crazy couple of weeks splitting time between locations and not always having easy access to the internet.

Kindest regards,

Debbie

[Susan L]

I am glad everything is going according to plan. It is something that they know exactly what symptoms can appear and how to take care of them. I think about you both often. I am really not doing well, my face is a little swollen, now my gums are swollen and I still hurt and am so tired. I dont think this is normal - I am going to call the doctor Monday. I have not been able to function and this cant really be the way it is suppose to be. Going in the yard is a burden. I will let you know. I hope everything continues to go on schedule for you. Is your husbands donor there? I am not familiar with the process. Take care.

[Debbie W]

Please let me know what the doctor says, if you do not think things are normal then follow your instincts and question, question, question. Ask for another BMB to see if the treatment is really working, thinking of my post re blood and blast counts. So far things are OK here, they have increased the antibiotics as they did detect a bacterial infection, but without any additional fever they think the antibiotics are working. Maybe they will know more about the infection tomorrow and the detail from the blood cultures. My husband's siblings are withing driving distance and will not be here until they know the blasts are under 5% and he is ready for transplant, that will not be known until the beginning of September, we just have to hope that this induction therapy worked. Will be looking for an update from you and wishing that all goes well for you.

Sending positive thoughts to you and everyone else going through this journey.

Debbie

[Susan L]

Thank you for your reply and support. I called the doctor yesterday after I woke up with my face swollen and sores in my mouth. He called in a fungal medication and I am calling him this morning. I am going to follow my instints as I do not feel things are right. I am getting short of breath more and more and the exhaustion seems to be out of hand. The blood cultures will tell you what is going on. I bet you are tired being away from home and stressed. Take care of yourself also, as you know you will be needed so much. I will let you know what the doctor says. Thank you again, this is such a frustrating disease.

[Debbie W]

Glad to hear that you have already called and will do so again today, especially if you feel short of breath. If possible please update later, I'll be thinking of you :)

Best regards,

Debbie

[Susan L]

Hi- I have an appointment at 945 tomorrow - I will let you know what is up. I slept all day.

[Debbie W]

I hope you had a better day today and that the doctor was able to shed some light on the recent side effects. All OK here so far and no transfusions for the last two days - just waiting to know if it worked.

Best wishes :)

Debbie

[Debbie W]

Best of luck tomorrow with the BMB and the subsequent results. I had asked today about seeing if there were any blasts in my husband's blood, but they said there are things that are not even looked at when the counts are low. All in all everything is going according to schedule.

Best regards,

Debbie

[Susan L]

Hi - I have had numerous tests done and had my biopsy done today. The venous scan - no clots, the chest/angio - no clots, some emphysema, ekg - normal, echo - mild changes but nothing to cause the problems I have been having, so Doctor and Pa agree it is either the chemo or my disease process changing. The bone marrow biopsy will tell. That will take two weeks, but I am feeling stronger everyday now that I am not on the chemo. We will see. No transfusions for two days is doing pretty good, I am glad. Keeping fingers crossed that everything will continue to go according to the plan. Keep your spirits up - go for walks (if you can) just to get some air. Thinking about you both. Susan

[Debbie W]

Sorry about all the tests as I know they can be tiring on their own, I hope it is just the chemo and that a little rest will help, but that it will still yield the desired results. I'm happy that they went ahead with another BMB, sure I am not the one having that done, but I still think it is helpful to know if continued treatment on the same regimen is what is needed. Are they still intending to start another round of Dagocen next week, or has that been delayed until the results of the BMB?

We are still waiting for things to clear up, they had detected an infection in the lungs and waiting for a follow up CT scan, just not sure if it will be the end of this week or the following week. My husband is getting anxious to leave the confines of floor 12 and floor 15, where they have the recreational facilities, hoping that they will release him with oral antibiotics and a follow up CT scan closer to home as an outpatient.

Two new items today, they were able to calcuate an ANC - .2 and he was allowed about two hours away from his patient pal when they changed the lines and before they had to start more anti-everythings (biotics, fungals etc) We'll see what tomorrow brings. Asked questions today about the blasts in his peripheral blood as an indicator that the treatment is working, still trying to research a bit more on this issue to see if there are any early indications if the treatment is indeed working, guess I'm not a patient caregiver :)

Best to you :)

Debbie

[Susan L]

Sorry I havent written - I am happy they did the BMB again also as I am curious to see if the treatment is working too. I am nervous about the results thou as the doc said it looks like my counts are just all over the place right now. We will see. I hope the infection clears up fast so you all can get out of there and go home for a bit. I know it is frustrating. Dont worry about being an impatient caregiver - we are impatient patients :-) Do they tell you the blasts figures? We do tend to hold onto any information we get. I will let you know what happens. I am feeling some stronger since the chemo stopped. I am not sure what they will be putting me on since everyone agrees that it appears the chemo was the culprit to the increasing exhaustion and shortness of breath. Hope there is something I can get. Keeping fingers crossed. Have a good weekend.

[Debbie W]

No need to apologize especially with feeling run down, I'm happy to hear you are feeling stronger, but wish your counts would settle down more. Hoping for good results from your recent BMB :) They did tell us that there were some blasts in the blood (1-2) when he was admitted, but then nothing after day two of chemo. What they also said is that the Neupogen can force some blasts from the marrow into the blood, so I've not asked what they were in the past two days. They will another CT scan on Sunday or Monday and if it looks like the infection is clearing up then he can go home with an oral antifungal. A week or so after dicharge they'll do a follow up BMB and if all goes well they'll schedule him for a transplant.

Fingers crossed - for everyone :) Have a good weekend as well!

[Susan L]

Here's wishing the scan goes perfectly on Sun or Mon so you guys can go home for awhile. I hope it all happens fast for you. I am anxiously waiting for the results of the BMB. I went over the last results that were done in May and got bummed out but really hoping something is better now. I am not sure what there is for treatment as the Dacogen is out now. We will see. Have a good weekend and talk to you later.

[Debbie W]

Walking the line between staying informed while not wanting to get bummed out can be difficult, hoping that the Dacogen worked well enough and that there is improvement in your latest BMB. If so, what about a lower dose???

Still waiting for the scan, if that looks OK then we'll go home tomorrow. They started Neupogen shots last week to boost his WBC to help fight any infection, they did work wonders on his count. The WBC was over 9 yesterday and the ANC was over 5. Hemoglobin was still lagging, but platelets have climbed steadily for the past week, well over 100 yesterday. We'll see what today brings.

Hopefully you had a good weekend :)

[Susan L]

Well congrats on Mike's CT. Take your hubby home and enjoy. I will let you know how it goes on the 31st. I hope you get to stay put at home till the BMT. I dont have a clue what the doc will do, but am hoping it will be something that can be tolerated. Take care.

[Debbie W]

Thanks and will do, there is still a very small spot on his lungs, but they are sending us home with oral medication. They'll do another BMB in a week or so and looking for some good results.

We'll have three days before our son starts college, fortunately he is going to a school in state, so anything that is forgotten can easily be delivered.

I'll be thinking about you on the 31st :)

[Susan L]

Thank you - I hope you all have some memorable times while your home before the next stage. Enjoy. I am still nervous regarding my results. I am not a patient person myself. I wonder if they would put me on Vidaza if they are not going to use the dacogen. Oh well, we will see. My husband is starting to show his nerves. He is not well either. He has a bone disease of his joints called AVN. So far it has only affected his hips. He had his right hip replaced 3 yrs ago and a rod put in the other leg to try to stimulate blood flow. Anyway - didnt mean to go on and on - I hope you enjoy your time with your son before he leaves. Do you have a daughter? Take care. Susan

[Debbie W]

Getting used to being home after 6 hours. Next appointment is 9/1 for the follow up BMB so we'll be right behind you. I remember before he started the Dacogen that the doc asked for a quick response on the blast count and they had that within a day or two, so I'm going to ask if she can do that this time.
I still wonder about the differences in dosage between your treatment and my husbands. I would imagine that either Vidaza or maybe even low dose cytarabine if the BMB showed that the Dacogen had no effect??? If the Dacogen did in fact reduce the blasts then maybe a lower dose of Dacogen - obviously just thinking out loud with no hem/onc training, but also believe there are possibilities :) Sounds like you have to be both a patient and caregiver at this point and that is not an easy task and possibly a time to call in those who have offered a casual "Let me know what I can do." And you can always vent here and look for some emotional support :)

Yes, a daughter in fourth year of med school and a son starting college this year. In between my kids, my Mom had breast cancer that had metastasized to the bone, somehow the body knows that now is not the time to get pregnant, funny how that works.

Stay strong and be well,
Debbie

[Susan L]

Hi - Well I am sure Mike is content being home now. I remember coming home after ATG treatment after being away for 30 days - it was so nice I didnt want to leave. Enjoy yourselves. I hope your daughter does good in med school - has she decided what specialty she wants to go into? I am sorry about your mom. My Mom and Dad both passed away 3 yrs for my Mom, and 2 yrs now for my Dad. We had them come to live with us 8 yrs ago and I am glad for that time. I dont have any other family except my husband and am grateful to him. He actually takes care of me - with my tiredness he takes care of most things. He loves to cook so he does all the cooking. I am keeping the faith that either a new med or reduced dose of the dacogen. Keep your spirits up and talk to you later.

[Debbie W]

Yes he is happy to be home! My daughter is strongly leaning towards cardiology, she graduates this May and is starting the process of applying for a residency in internal medicine, from there you can go into several fields, including cardiology. So another six years, but at least there will be a salary instead of tuition.

Really sorry about your parents, my Mom died 17 months prior to my Dad and my son was born in between. We always said that my Dad died of a broken heart, it hurts to lose both of them in such a short span of time, but for me that was years ago (1989 & 1991) and time really does help - a little. It is still fresh for you, but I'm glad you had some time together and were willing to have them live with, not everyone would be willing to do that.

Your husband sounds wonderful, kind of like mine, I do not like to cook, plus his meals are better. Keep the faith and follow your good instincts. Are you feeling any better as the days go by without the Dacogen? Also can you ask for any prelimary results, the doc had a blast count within a day or two in May, but I know that she said she was going to ask them to rush the results.

Warmest regards,
Debbie

[Susan L]

Hi - Had a call from the doctors office - if I could come in at 10 today. I am a bit nervous, but it is what it is. That is wonderful about your daughter, you both must be so proud. I too do not like to cook, so it is great that my husband like too. (Otherwise I think we would starve) I am hoping my news today will be good. I am trying to stay positive. Will let you know later tonight. Take care. (PS Thanks for your replys)

[Debbie W]

Thinking of you now and will check back later for any news or you can send me a PM or email. Sending good thoughts your way :)

Debbie

[Susan L]

Hi- Well it didnt work for me - Doc said we will try Vidaza starting Monday. My BMB has changed just alittle. It now is saying RAEB-2 - my blasts have increased and my chromosomes are all screwed up. Hope Mike is doing good at home. Taking all the meds right? Becareful around anyone that has a cold or anything. I'm still kind of in a numb state with all that keeps going on. I have faith - it'll work out in the end. Take care.

[Debbie W]

Insert curse word here <<< I was so hoping that it had worked for you, but I'm glad you found out before going another round. Vidaza has better results for more people, so try and keep the faith that you are one of them! From what I've read it can also take a little longer to work, guess there is a fine balance of wanting to know whether it worked, and testing too soon before it has a chance to work. Will this be inpatient or outpatient? Keep in touch and let us know how you are doing, you cannot help but feel a little numb at this point.

Yes husband is taking his meds, really just an oral antifungal to clear up any lingering problem in the lungs. Blood count tomorrow and then BMB on Tuesday, then the waiting begins again.

Hugs,
Debbie

[Susan L]

Hi - Thanks for all of your support. I am feeling much better about everything today. Once I got home and got things out of my system, all better today. It will be outpatient - same schedule as other. 5 days on 3 weeks off. I am going to give it my very best effort. Hopefully we all can get a little rest for awhile with out anymore bad news. My husband said cant we just have one month of normalcy. Don't know what that is anymore, and I bet you all feel the same. Well have a wonderful weekend!!! Thank you again for your support, I started wanting to help you both with info and its turned to you giving me the support! Heres a hug back to you both!!!

[Debbie W]

Glad to hear it is a better day today, we all try to support and help whenever we can and it has been a two way street. Happy that it will be an outpatient treatment and that you have a positive attitude.

My husband's blood counts look good today, now just waiting for the BMB next week. Enjoy your weekend!

Warm regards,
Debbie

[Susan L]

Hi - Glad to say I had a great couple of days. My husband and I packed a picnic basket and took off for the mountains. It was so nich to just get away for awhile. The weather was beautiful, its been so awfully hot. There was a nice breeze and just perfect. I'm glad to hear Mike's counts looked ok. Best wishes coming on the BMB. I will pray things will be what is needed to continue with the transplant. I start my new treatment with a fresh mind and spirit on Monday. I am going to do all that I can to make this work. Take care and let me know how things are. Susan

[Debbie W]

That sounds wonderful and glad you decided to get away for awhile, we have not packed a picnic basket in awhile, but that sounds like a great idea. Keep that positive spirit for the next week or two and we'll do the same, I'll post the results, hopefully end of next week.

Enjoy tomorrow,
Debbie

[Susan L]

Hi - If you all get a chance - just pack some sandwiches and fruit and just drive out of town. I swear it did a world of good for us both. Just to be away from the phone, tv etc.... I am keeping the faith and staying positive. I will be waiting to hear Mike's counts and BMB results. take care. Susan :)

[Debbie W]

It sounds great and I can see how it does a world of good! Hope all went well today, do they expect the bottoming week to be next week as they did with decitabine? Will post when we have the BMB results, hopefully end of this week.

Stay positive :)
Debbie

[Susan L]

Bottoming week will be next week, alittle nauseated this morning but no biggie. Ready for this all to work, please let me know how things go for Mike. Take care

[Debbie W]

We'll all ready for this to work, just three more days.

Should have BMB results Thursday or Friday, also the doc said waiting til 9/16 to meet with a transplant doc was too long, so she will work on having that moved up.

Wishes for a bright tomorrow,
Debbie

P.S. Going to post Mike's counts later in the thread I started under MDS. For now WBC 5.2, hemoglobin 12.1, platelets 368, still want to wait for the BMB results.

[Susan L]

Hi - Those numbers so far are really good. I guess if the BMB is ok there isnt any reason to wait -- I am very happy for him. You do not realize how fortunate Mike is to have a match like he does, and having 2 is unreal. How is his spirit doing? It really is hard to stay up all the time. I am going to try my hardest. So far I am ok, Doc said 10 to 15 days from treatment start to having side effects hit. Take care and take time for yourself too!! Susan

[Debbie W]

Yes the counts were good and they just called to say blasts are now 4%. He is fortunate to have several siblings and two are a match. They had also searched the BM registry back in June, just in case, and there were some possibilities there as well.

His spirits are good. Do not feel as if you need to keep your spirits up all the time as nobody can, just do not let the down periods consume too much time.

Hugs,
Debbie

[Susan L]

Hi Debbie - Hope all is well - Still hoping and praying this chemo works. Been having some really weird bad dreams lately. Think its either the chemo or just stress. Take care - let me know how things are. Hugs coming your way.

[Debbie W]

Hopefully those bad dreams are gone! I ran across another name of a drug that I had not seen mentioned here, I have not researched it that much, so I'm just throwing it out here - Mylotarg and it appears that it can be used in combo with Vidaza. From the little I've read it helped some people and did not help others. Maybe others have some additional info, as usual I'll be thinking of you this week - get some extra rest and maybe a picnic :)

Best regards,
Debbie

[Susan L]

Hi - I looked up that drug and it was taken off the market June 2010. FDA called it off for treatment. Anyway, I am still hoping this will work. I did alot outdoors today and it felt great. (Alot meaning more than nothing---lol) The weather is perfect out here right now. The dreams are still really weird, I do think it is from the medication and I'll mention it next week some time if it keeps up. I bet Mike is pretty anxious to get this going. We all will be sending prayers and wishes your way. Susan

[Debbie W]

Wow, that will teach me to just throw out names without any further research!!!

Vidaza has worked for others so keep the positive thoughts going and I'll do the same. Glad to hear you enjoyed the outdoor time today and may your dreams tonight be of all things beautiful :)

Debbie

Just posting these links for others in case they are interested.
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm216448.htm
http://www.fiercepharma.com/story/did-fda-drop-ball-pfizers-mylotarg/2010-06-22

[rose mcmillin]

Hi - I looked up that drug and it was taken off the market June 2010. FDA called it off for treatment. Anyway, I am still hoping this will work. I did alot outdoors today and it felt great. (Alot meaning more than nothing---lol) The weather is perfect out here right now. The dreams are still really weird, I do think it is from the medication and I'll mention it next week some time if it keeps up. I bet Mike is pretty anxious to get this going. We all will be sending prayers and wishes your way. Susan

Hi Susan, Just wanted to give you a little encouragement. My husband has been on Vidaza for a long time with very good results. We are also Raeb-2. There are alot of ups and downs with this disease as you know. Try not to let the negatives overpower you. I have found that I will fret about this or that only to see it all change within the next week. Usually an improvement. Take care and just know that you are being thought about. Take care of yourself. Sincerely, Rose

[Susan L]

Thank you both for your encouragement. I am staying positive about this treatment. I am very happy to hear that someone has been on this for a long time.

Debbie - That was very thoughtful that you thought of another med. Who would of known it was stopped unless we are constantly reading the medical news.

Rose - Does your husband have any fatigue with this med? I know they all do, I am just hoping I will be able to stay at work all day without using all my hours.

Have a good day and best wishes are coming your way.

Susan

[Debbie W]

It sounds as if you are feeling better on the Vidaza so it must be the right medicine :) :)

Thanks for the kind note. Going to start another thread in the transplant section, there was a time when I wanted to be able to post in that forum about my husband's transplant. But today I'm feeling like things are moving too quickly and need some extra time.

:eek:

[Susan L]

It sounds as if you are feeling better on the Vidaza so it must be the right medicine :) :)

Thanks for the kind note. Going to start another thread in the transplant section, there was a time when I wanted to be able to post in that forum about my husband's transplant. But today I'm feeling like things are moving too quickly and need some extra time.

:eek:
Things are moving very fast for you. Take deep breaths, I am not one to say anything - I get overwhelmed with how things go at times for decisions. I am glad that things are going good thou. Keeping you in my prayers and I am feeling ok so far Yippee -- I just want to be able to work and function 1/2 normal. Thats not asking for too much. Take care.

[Debbie W]

Very happy to hear you are feeling OK so far, especially since you are probably near a low point with counts if Vidaza is anything like the Dacogen. I hope you will achieve the same results as Karen (Mausmish) has with Vidaza.

Two days of reading and speaking with others has helped, I'll update the transplant thread I started, still wish things had moved a little slower :)

Debbie

[Susan L]

Good morning - I see that you have been given alot of info here alone on the BMT. The decisions that are made are very hard. It most be hard for you as the caregiver and Mike as the patient to process everything right now so quickly. Since being diagnosed w/MDS my whole life has changed. My husband talked this morning about 9 yrs ago - the Twin Towers in NY being destroyed in such a way. How lives have changed. 9 yrs ago I am sure you and Mike had no clue this would be going on in your lives, I was feeling ok and worried once in awhile of the little pettechae that showed up. They say we are given what we can handle, and this is all in Gods plan. I believe we will all make it thru this and be better for it. Take care. Hugs coming your way. Treasure each other. :)

[Debbie W]

Sometimes I think that I just make myself nuts wanting to make the best decision possible, then again this is no small decision. The doc at Hutchinson was very helpful in saying that the timing of the transplant probably trumps the method.

Yes our lives can change so quickly, just as it did 9 years ago for so many people, plans get altered, but we still continue.

Thanks and hugs to you and yours,
Debbie

[Susan L]

Sometimes I think that I just make myself nuts wanting to make the best decision possible, then again this is no small decision. The doc at Hutchinson was very helpful in saying that the timing of the transplant probably trumps the method.

Yes our lives can change so quickly, just as it did 9 years ago for so many people, plans get altered, but we still continue.

Thanks and hugs to you and yours,
Debbie

You are doing great handling all of this. I know Mike is proud to have you there helping him thru this. Take care.

[Debbie W]

Thanks so much, we just went over the list of questions for tomorrow. I told him that I did not want him worrying too much about this, but I could tell he is thankful - I think :D

Hope all is going well and that you had a good weekend.

Be well,
Debbie

[Susan L]

Best of luck on all the testing today. I know it is stressful. I'm doing ok so far - :)

[Debbie W]

So glad you are doing well so far, did the Vidaza knock your counts down as much as the Dacogen?

All went well, just a long day. Provided one other test comes back OK for his brother then they will use him as the donor, we'll know by the end of the week. Fingers crossed that yesterday's BMB looks OK and he can be admitted on Tuesday.

Kind regards,
Debbie

[Susan L]

So glad you are doing well so far, did the Vidaza knock your counts down as much as the Dacogen?

All went well, just a long day. Provided one other test comes back OK for his brother then they will use him as the donor, we'll know by the end of the week. Fingers crossed that yesterday's BMB looks OK and he can be admitted on Tuesday.

Kind regards,
Debbie

Hi - I am feeling ok - havent had my blood checked since I started. The doctor said we'll check prior to the next round. (the 27th) I am feeling stronger and not so many side effects. Yippee.

I am sure you guys were wore out after having the tests yesterday. Keeping my fingers crossed also on the BMB to be just fine. Time is going fast now. Got plenty of books, radio, cards, writing tablets for the stay? I am sure you are well prepared. Take care. Susan L.