Dacogen Tx

[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/Newsro.../ucm216448.htm
http://www.fiercepharma.com/story/di...arg/2010-06-22

[rose mcmillin]

Originally Posted by 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

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.

[Susan L]

Originally Posted by 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.

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]

Originally Posted by 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

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

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]

Originally Posted by 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

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.