Hello Everyone - Beginning our Journey

[Debbie W]

My husband was recently diagnosed with MDS on 4/29/2010 and I am so happy to have found this forum, I've read many of the messages here in the past week. We have had one consultation with a doctor at Sloan Kettering who is recommending Dacogen with the ultimate goal being a BMT as my husband just turned 58, is in otherwise good health and has 8 siblings. Lots of information to digest, but thought I would introduce myself as we begin on this new path.

Thanks to all who share their experiences :)

[rose mcmillin]

Hi Debbie, Hope that you ask any questions that you want on this site. I have found everyone very helpful and eager to help.

I wish you well. This is a confusing and frustrating disease. Remember to take care of yourself as well or you will get worn out. Take care and keep us informed. Rose

[Debbie W]

I'll surely ask questions as we move forward. As you said everyone seems to be helpful and supportive, something we all need. The well wishes and reminder to take care are appreciated.

[Debbie W]

Thanks for the note, I could not find the reply for PM's so I'll post it here. We are just a train ride from DC and will keep the conference in mind, guess it really depends on where we are in relation to treatments and Mike's blood counts at the time. We do have relatives in the area who will put us up for a few nights, at least I think they will :)

Also thanks for the forum, I did read your wife's story about her BMT which was encouraging.

Still trying to learn the language, tomorrow will be two weeks since his diagnosis. We did meet with Dr. Klimek of Sloan Kettering last Thursday who strongly suggested a BMT, they are in the process of reviewing his BMB which was done locally. The local hospital said about 10% blasts and Sloan said about 15% blasts, we are seeking another appointment at the NIH, although we do not want to wait too long before treatment.

Thanks again for the forum.

[Gene_In_Va]

Debbie,

It hasn't been too long ago that I received my diagnosis (September of last year). I remember the initial shock and fear and shock.

If I can help in anyway you or your husband are welcome to contact me. Gene@ntw.bz.

This thing is a bear and a roller coaster! Knowledge is control and the key.

Best to you and your husband.

Gene In Virginia

[Debbie W]

Right now I feel as if I have begun emptying the closets in order to organize them, still not sure what may fall off that top shelf, but I do know that sometimes things become more chaotic before we see improvement. You are so right about the shock and fear, thanks for the kind offer which I will keep in mind. Every diagnosis seems so specific, we are awaiting the final report from Sloan on their evaluation of the slides.

Best wishes,

Debbie

[Neil Cuadra]

Thanks for the note, I could not find the reply for PM's so I'll post it here.
For the record, the button looks like this

219
It's in the bottom right corner when you are reading a private message.

Good luck. Keep your chin up!

[Gene_In_Va]

Debbie,

The waiting is HELL.

I am waiting for my 2nd Bone Marrow Biopsy results. (takes 2 weeks in my area)
the first time (Oct 2009) was hell cause we had no idea what to expect.

This time we are the same way. Not because we don't understand the possibilities but because my "recovery" to near normal levels via Revlimid are almost too good to believe (the top of my closet may still contain a few shoes that haven't dropped yet - to continue with your analogy.

Hopefully we both will get good news - soon.

Gene

[Debbie W]

Not sure how I missed the reply button!

Chin up, thanks :)

[Debbie W]

Looking on the bright side, waiting longer for results allows more time for postive thoughts and I hope the outcome is good.

Please let us know.

At this point we are just looking for a second opinion and hoping we can get and appointment soon.

[Debbie W]

How quickly time moves ...

we never did make it to the NIH for a second opinion, Sloan came up with a blast count of 15% when they reviewed the slides of the original BMB, the local hospital had 10%. Although the NIH was in the process of scheduling an appointment we felt that time was not on our side and also wanted to start treatment in a facility that was closer to home.

My husband decided to go ahead with the trial of decitabine and tretinoin and started the 5 day IV decitabine on 5/24.

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

We just had our follow up appointment with Dr. Klimek today to see if he was ready to start cycle two next week and all looks good.

The first month did present some challenges. A week after finishing the decitabine and day two of the oral tretinoin he started to run a fever, we were already scheduled to have a red blood cell transfusion in NYC the following day, but went to the ER where they admitted him and kept him there for a week. He had 3 units of blood and a unit of platelets. His ANC hit a bottom at 90 and they were able to manage the side effects of the tretinoin, mainly headache and subsequent nausea.

It appears that one of his brothers might be a good match for a BMT and the hope is to lower the blast count and then do a BMT.

His hemoglobin was 6.6 at diagnosis and today it was 10.5 so hopefully he is responding to the medication.

Best wishes to everyone who is coping with this disease.

Regards,

Debbie

[Debbie W]

My husband's treatment was delayed for a day until they received his current AST level, so our treatment was Tuesday thru Saturday this week.

So far, so good and he did not have to receive any transfusions this week.

Hoping that this next week his counts do not drop as much as they did with the first cycle, all blood count levels increased, measured after day two of the five day treatment. They say counts should hit bottom between day seven and day ten so we'll see :)

Happy to be home for now!

[marieostrom]

Debbie, I had good luck with Dacogen. Received 12 treatment cycles Sept 07 thru Aug 08. I did need transfusions the first three months but none after that when my counts started rising. I was told to expect those results upfront which made it easier to accept. I was off any treatments for 15 months when I seem to be undergoing a relapse and am now on Dacogen with the possibility of lower dosage or longer rest between cycles.
So keep the faith and hopefully all will be well.

[Debbie W]

Thanks for the words of wisdom about transfusions and we are hoping that his counts do not go as low as they did after the first treatment.

From reading the various messages here there are a couple of people who have a longer resting period or receive a lower dose. Wishing you success with this new regimen. :)

[Donna E]

Hi, I have not been on the forum in a while but wanted to give you hope. I am so glad that your husband might be able to get a BMT. I hope you have found a wealth of info at the AAMDS.org site as well. They gave our family a lot of strength. Where are you from? NY area? My Dad had MDS and he worked in the city during his career and lived in NJ. I am always curious to gather info on common threads. I want so much to find out more answers on this illness. Feel free to reach out to me at destwanick@yahoo.com if you ever need strength. Your husband is blessed to have you and 8 siblings to give him strength and courage. My Dad had lots of love and support too. It is so important . . . God Bless you both and keep the HOPE alive. This forum is a wonderful way to connect with other people who's lives have been touched by MDS.

[Debbie W]

Thank you for the kind and positive thoughts - we are holding onto hope and today's visit gave us a little more hope. He has two sibling that are a match and hopefully today's BMB will be encouraging - the doctor seemed to think the results should be good based on his recent counts. We'll know the results late this week and if all goes well, then they'll set up an appointment with the transplant doctor.

We are in central NJ, near Princeton, the docs recommended either Sloan or U Penn for treatment. Next week he starts the third round of decitabine and tretinoin and once again will be staying at Hope Lodge in NYC for the week.

We have many people to thank, especially those who took a chance with new treatments and transplants.

[Debbie W]

This sounds very good! Hope you are doing well :)

"2nd BMB results from 5/15/2010: 6 of the 20 specimens now show normal cytogenics."

[Lisa Z]

I am from the Philly area and have MDS. If you consider Penn, see if you can get Dr. Porter. I work with him and he is great. I see him 2x a year just to keep in abreast of my condition. I use my local hematologist on a more frequent basis. but, if I ultimately get a BMT, I'd likely do it at Penn w/Dr. Porter

Good luck to you and your husband.
You can e-mail me directly if you wish.

[Debbie W]

My husband was scheduled to start the third cycle of decitabine on Monday, but the BMB done this past Tuesday now shows 20% blast count.

They want him to start induction therapy instead, we're still trying to sort all this out.

[Debbie W]

My husband has been treated at Sloan since May, but as noted above, the decitabine does not appear to be working. We hate to lose time switching at this point, but I do appreciate the reference.

[Debbie W]

My husband started induction therapy on 7/27, so he is now in the third week of treatment, the chemo lasts one week, but it really does knock your counts down so they keep you another three weeks. Other than one day of a fever it has been relatively quiet, some minor mouth sores, but he really only skipped one day of meals when he had a fever. He has had about 6 units of blood and three units of platelets. The hardest part is waiting for the next BMB which they do as an outpatient a week after he is discharged and we just have to believe that the chemo has worked. He continues to do his laps around the floor to keep up his strength and is looking forward to being released after another week and a half.

[Neil Cuadra]

Debbie,

Thanks for the updates on Mike. How are YOU holding up?

[Susan L]

Do keep your strength up. I know its hard on the family also. As I told you I am going thru tests this week and can see my husband worrying so much. Thank you for your message of concern. Also I am not too sure about starting another round of Dacogen if the tests so far dont give a reason for this shortness of breath. What do you think?

[Debbie W]

Holding up OK, fortunate to have support from family and friends, just another week and a half at the hospital and then looking forward to going home, and more importantly for the treatment to be successful. Thanks for asking :)

[Debbie W]

It is actually easier being away from home as all those cares are left behind and will be dealt with in the future. Thanks for the updates and as I said in my email to you that I would also be concerned if you are still feeling as bad as you are now - we'll keep in touch and follow your instincts :)

[Susan L]

Hi - I am now scheduled for an EKG and Echo on Monday. My CT showed only some emphysema in the upper right lobe, but they didnt think that was causing all my shortness of breath and tiredness. I got a reprieve on my treatment for one week and am happy about that. I'm glad you have your sister with you supporting you both. I will let you know how things go. Hope your weekend goes by smoothly. Best regards - Susan

[Debbie W]

So glad you are getting a break and that they are doing further testing this coming week, I still wonder whether or not they should do a BMB to see if the blasts have decreased. I know it is easy for me to say as I'm not going through the tests, have you or your doctor considered doing that before the fourth cycle??? Hope you get stronger throughout the weekend.

Warm regards,

Debbie

[Debbie W]

A month in the hospital sure was long, but if it worked then it was time well spent. Follow up BMB is next week, so the waiting begins. I must say that the hospital was prepared for any side effects, they even told my husband that he was a day late when he finally began to register a fever. As a caregiver it was not so bad, he had some mouth sores, but was still able to eat and had one day of a fever, but of course I was not the patient. He had an infection in his central line and some presumed fungal pneumonia, but he was supported with anti-everythings. He is so glad to leave his patient pal behind and the confines of two floors in the hospital. We'll see what the next week or two brings :) I've posted some of the story in the thread below...

http://forums.marrowforums.org/showthread.php?t=1555

Best of luck to everyone!!!

[Debbie W]

such as going out to dinner last night, and seeing our son off to college today :(

We're officially empty nesters as of today, but it does not feel that way, as we still have this battle to fight. My husbands blood counts yesterday were very good yesterday, the WBC was given a boost with the Neupogen shots prior to discharge, but we'll see where things are after the BMB this coming week. FWIW, hemoglobin 11.4, platelets 277, WBC 9.2 and ANC 5.79.

Best of luck to everyone fighting this battle and thanks for all the support,
Debbie

[Neil Cuadra]

Emptying the nest must be both a happy and sad occasion for you, being proud of your son and missing him at the same time. I hope he's not too far away for visits.

Let us know how the biopsy goes.

[Debbie W]

Thanks Neil and I'll post the results. Kind of strange and not at all what we had envisioned for this period of our lives, but we'll try and make lemonade from the lemons :)

He is close by so there will be more visits, my daughter was an eight hour drive, so this is a piece of cake.

Thanks for the support and the site :)

[Debbie W]

they just called to say that the BMB from yesterday showed 4% blasts, down from the last count of 20%. His doctor wants to move quickly and is trying to get the appointment with the transplant doc, currently scheduled for 9/16, moved up.

FWIW yesterday's blood counts

WBC 5.2, hemoglobin 12.1, platelets 368

Best to everyone fighting this battle,
Debbie

[ann]

We will pray that the doctor can move the transplant up for asap.
God bless you both and I know that you will be in capable hands.
ann

[Debbie W]

Thanks, we have an appointment on Wednesday with the transplant doctor and all sorts of tests on next week as well.

Yes, we really are in their hands to a large extent.

I do hope that you get good results from the BMB next week.

Warm regards,
Debbie

[Lori Patrick]

I am scheduled for Induction Chemo October 13, 2010. Brother is being tested to see if he is a match for a transplant. What can I expect???? I am scared of the Chemo. Thanks to all. Lori

15% blasts

[Debbie W]

Sorry you had join this club, but happy you are reaching out. It was relatively uneventful for my husband, one day of fever, some swelling of the legs treated with Lasix, really no nausea and except for the one day when he had a fever he ate most meals. Somethings did not taste right, for example soda had a metallic taste so he avoided that and also said that foods did not taste bad, they just did not have much taste. He also found it hard to concentrate, whether a movie or a book, so some short stories, a TV series and some easy cross word puzzles might be more appealing. You can also expect some transfusions and laps around the floor, he did morning, afternoon and evening to break up the day. He did lose his hair and finally had it cut very short sometime in the second or third week. He had the cytarabine for 7 days and daunorubicin for 3 days, then three weeks of monitoring and a BMB a week after discharge.

Did they discuss trying Dacogen or Vidaza before proceeding to induction chemo to see if they would reduce the blasts enough for transplant? My husband is on Day +8 after transplant

Wishing you well and hoping that your brother is a match!

Best regards,
Debbie

[Lori Patrick]

Hi Debbie. Thanks for responding! I am grasping at anything at the moment. Tomorrow I will receive a call when the hospital has my room ready. My bag and my husband's bag are ready to go when they call. I'm just numb to a point and ready to begin this travel.

All I know right now is that my doc wants to do Induction Chemo and if I survive it and the MDS is not resistant, a bone marrow (stem cell) transplant. I was told to be prepared for 4-6 weeks in the hospital.

I feel for you as I watch my family go through this. I just want it to get going soon, which it will tomorrow :).

I'm sure I'll be in touch often! Laptop is ready to go too!

Is there a site that is good for journaling so I can inform friends/family of my daily happenings?

Blessings to you and your husband and family. Lori

MDS-RAEB-II 15% blasts. Induction Therapy to begin 10-13-2010.

[Snuuze]

Hi, Lori,

Caringbridge.org is a very easy site to set up and update friends and family.

I hope everything goes smoothly for you.

Sue

[Debbie W]

Best of luck as you begin induction therapy. My best advice from the sidelines is to use drugs as needed for nausea etc. make use of the available tools such as integrative medicine, recreational facilities, try to continue eating something when possible and get some exercise each day.

Regards,
Debbie

[Arthur]

Hi, Debbie

In 1996 I was 55 when I was diagnosed with MDS (RARS) and at that time the prognosis for that was not very good, though it was better than it would have been for me had I been diagnosed as has your husband with RAEB.

I write because I am still here, well beyond my expected "sell by" date as originally seen in my diagnosis-- 14 years now!-- and I have been for 7-plus years on a treatment that was listed as successful in only one out of 10 people with RARS (procrit-- now changed to aranesp after the recall).

My basic point is, that RA is a very "personal" disease, unique in many ways to each person with it. Once in an AA/MDS conference we broke out into groups relevant to our particular form of MDS: There were 12 of us with RARS in the same room and no two of us seemed to have the same disease when it came to how we felt, how we were treated, etc. etc.

So, always consider ALL your options, despite sometimes the low odds, cause ya never know :)

And FYI, here's a link to an article I wrote 10 years ago (updated 4 years ago) on how to get on with life once you've been told you have MDS or any life-threatening disease. Hope it is of some value to you.

God Bless

http://www.aamds.org/aplastic/information__hope/stories_of_inspirati/perspective_on_livin.php

[cathybee1]

I really appreciated the link to the article you wrote. Thank you.