Dacogen Tx

[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!!!