Hello Everyone - Beginning our Journey

[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/inform...e_on_livin.php

[cathybee1]

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