MDS to AML

[Loretta]

I guess the other shoe has dropped. My blood tests and more importantly, my bone marrow biopsy results from my MD Anderson visit on Tues. were not good. I have not rcvd. fax of the pathology report but have talked with Dr. deLima's nurse at MD Anderson several times today.Dr. DeLima said I have progressed now to AML. My excess blasts (the bad guys) that were 10-15% at my initial diagnosis in April 2005, had decreased with Vidaza treatment to 6% Dec. 2005, and 3% June 2006, are now at 32% with 7% in the periphereal blood. They are setting up appts. for me in the Leukemia Center at MD Anderson for next wk. They will contact me later today re. appts. Dr. deLima is saying I will probably need some more aggressive chemo.
He took extra blood 11/28 to check the antibodies and mentioned the possibility of finding a donor who matches at the A2 antigen but may be a mismatch at a less significant antigen. Their search has been continuing for the last 6 months without finding any matches. Dr. deLima wants my 3 children to come down to Houston to be tested. He also mentioned double cord blood transplant possiblity. Loretta/ aka Letty DeleteReplyForwardMove...

[Cathy]

Loretta,
Sorry to hear that Vidaza is no longer working. It must have been quite a shock to hear that you have progressed to AML! Revlimid has stopped working for me. My doctor has increased the dose, hoping to kick it back into remission, but if that doesn't do the trick he wants to try Vidaza. This illness is such a roller coaster ride. You are in my thoughts and prayers. Good luck!
Cathy

[Ruth Cuadra]

Loretta,

I've been away and am just catching up with Marrowforums. I am so very sorry to hear your news. Your positive attitude (that I got to see firsthand when we met at the conference in Nashville!) will certainly be important as the battle continues. Please keep us posted as much as you can.

Thinking of you,
Ruth

[Loretta]

At my appt. at MDA, my new leukemia doctor, Dr. Andreeff, said we would wait until Dec. 14 or 19 to begin treatment. I had another bone marrow biopsy, so they could study the cytogenetics and choose the best treatment plan. When I do go back they want me to plan for a 4 wk stay and be in total isolataion. I've started studying up on AML, and planning to have an early family Christmas before I go back to Houston. Thank you for your words of support.

[danarysavy]

I'll be keeping you in my thoughts & prayers. Enjoy your early Christmas with the family.

[knstone]

This disease is so insideous. How did you feel as it was jumping so high so quickly? Could you tell any difference? We are certainly praying you will do better soon. Kirby

[seniorrico]

Loretta,
My prayers are with you. May The Lord hold you in the palm of His mighty hand and direct the Doctors in giving you the best treatment possible.
Warren

[Loretta]

After singing the praises of Vidaza for my year reprieve from illness, it stopped working. On 11/28 my BMB showed 32% blasts and 6% in peripheral blood. So, my new dx is AML. I still am grateful for the great year I've had, and am looking forward to getting over this disease.
I’ve been off List-serves and Forums for the last week or so, and thought you might appreciate an update. I checked into MDAnderson late Dec. 19. The following day I had tests done, finding my unusual heart structure, which made drs. unsure about the placement of my Central Line. They also gave me a bag of platelets, so they could insert the line. After a CAT scan assured them of correct placement they began chemo: Idarubicin, and Cytarabine. Christmas day I was finished with the chemo. infusion. In addition to the platelets, I have had 4 RBC transfusions. My energy level is good, until they give me benedryl pre-transfusion. Slight n/d, controlled with Zofran and Lomotil. Lost my appetite the 3rd day and have that yucky mucous coating in my mouth that makes everything taste undesirable. I’m in Protective Environment room and can only visit through a glass window on speaker phone, but if this keeps me infection free I can do it. Thank you for the responses and prayers. They keep my spirit lifted.

[Loretta]

You asked how I felt as my blasts increased. They were very sneaky and I couldn't tell anything different. I noticed my CBC counts decreasing slightly. The last session of Vidaza, when they were going to give me my first shot of the series of 7, I didn't feel quite right. I can't explain it, maybe because my counts were dropping and I wasn't feeling as strong as I had felt. Insidious is correct adjective for this disease. Loretta

[Loretta]

I'm still doing well, and not disliking my Protective Environment. It gives me some peace of mind. After 5 days of chemo, Idarubicine and Ara-C, they are watching me for any bruises, bleeding , etc. because my counts are down, especially my platelets, I'm getting my 4th bag of platelets and 6th bag of RBC in the last 10 days.
I actually did all me exercises today (from physical therapy) except pedaling 15 min. I have 8 more min of that for later.
I must be tolerating chemo well, just slight waves of nausea and diarrhea, that they have kept in check.
Still thankful for the reprieve Vidaza gave me, it was a wonderful year!
Loretta

[Linda]

Dear Loretta,
I was wondering what your other counts were just before the drastic change in blasts was discovered. My husband's doc is not doing another BMB, he says that he will just watch the counts. Bob has had a month off of Vidaza in Nov. the counts WBC and PLt dropped He had a round of Vidaza that ended Christmas Eve. Then he has gone 42 days without treatment. The Platelet counts seem to be holding up. They dropped as low as 21 but rebounded on there own. I am just concerned about the blast percentage, and no other way to check it.

I do hope your new treatment is progressing, and you are doing well.

[Loretta]

Thank you for all your supportive and kind thoughts. I finished 2nd session of chemo as an outpatient, carrying around infusion and chemo bags for 3 days. No bad effects; I must be "a tough old hide," as my neighbor used to say. (Improved drugs, too.) I am Day 9 out of this treatment and my counts are "dropping nicely, as they should" the nurse informed me today. I'll just hang around in my new second home apt. in Houston, continue to get CBCs on Mon. and Thurs. and transfusions as needed, until my counts start to recover on their own (maybe Day 23.) Then, another bone marrow biopsy to see how effective this chemo was. My last session only brought my blasts down to 7%, then 5 days later those leukemia blasts went up to 13%! Luckily, my body is holding up to the battle.
To answer Linda, re. my counts dropping before I progressed from MDS to AML. While I was taking the Vidaza from Sessions 4-11, my counts were good on their own. My White Cells averaged 6. My Hemoglobin averaged 12-13. My Platelets 250-300K. Oct. 30 WC dropped to 2.50, and Nov. 28 they dropped to 1.60. Same dates, hemoglobin dropped to 11.8, then 10.1. Same dates platelets dropped from 191k to 94k. A week later the blasts showed up in my peripheral blood, 10%. Bone Marrow Biopsies seem to be the only way to measure blasts...but I guess if you see CBC counts continuely dropping and not recovering, that would indicate something's going on in that bone marrow.

[Linda]

Loretta, I am so glad to hear you are doing well!!! The nurse told me Monday (when Bob did not start Vidaza again), that the doc was watching the CBCs to see a sudden change. I finally found out what the blast percentage was for Bob, He was at 19% Jan 2006. I will have to ask about how to find out if there are blasts in the periferal blood. Thanks for your help. I will continue to pray for you, and the others on the list. Glad you are so tough!!

[Loretta]

On Dec. 19, and then again on Jan. 31, I began chemotherapy sessions of Ara-C and Idarubicin for the AML. When these drugs would not bring my leukemia blasts down to 5% (11% was the lowest counts went), I was sent to talk again to the BMT or Stem Cell Transplant doctor. We began testing and getting ready for the Stem Cell Transplant, scheduled for April 17. However, a bone marrow biopsy results showed an increase of blasts to 75%. So, again, the stem cell transplant was halted until the blast are down. So, on April 4, I began a 4th session of chemo (5 days of Clofarabine and Idarubicin) inpatient at M.D. Anderson. I went home to Houston apartment for a few days, but was readmitted via ER, with temperature and a bad case of mucouscitous (blood blisters, ulcers in throat and mouth.) Perhaps these side effects are signs of the chemo really attacking the leukemia blasts this time.

[Charlie]

My husband is looking at receiving Vidaza after he sees to getting some dental work done. Within the next few months he is looking at a minimun of 4 cycles of Vidaza. He is now under supportive care of Nupregen and Procrat. He is looking at a stem cell transplant within 4 to 6 months after the cycles of Vidaza.Any feed back on what he is fixing to go through would be appreciated Thanks Donna

[Ruth Cuadra]

On Monday, June 11, I received the following message from Loretta. I think she meant to send it to the forum but she is apparently unable to do so at this time. I am taking the liberty of sharing her message with all of you. --Ruth Cuadra

On June 1, I decided I had had enough chemo and just wanted to go home. A couple of wks before my cvc line became infected, so they pulled it out and started putting me on lots of antibiotics. My heart also started racing and they were having trouble calming it down.The MSR infection had started to grow aroung my heart valve. The chemo was not affecting my leukemeia blasts. I was just tired, and missed home and family and friends.
On June 4th my daughter and I rode back to Hurst (Ft. Worth area.) I checked into local hospital for a couple of days and decided to come home with Hospice Care on Wed. I've been getting stronger and resting better ever since. My daughters and sister have been around the clock caregivers, and there has been a constant flow of family, neighbors and friend dropping by. I'm at peace with my decision, as is all my family.
__________________
Loretta 58
MDS-RAEB dx 6/05
positive response to Vidaza 8/05 to 11/06
progressed to AML 11/28/06

[choijk]

Dear Loretta,

I have been following your story. I am happy to hear that you are back home with your loved ones. I believe God has a plan for everyone. Please continue to remain strong and have faith. The rest is up to the man upstairs. You will be in both my thoughts and prayers.

[Tom M]

Loretta,

I, too, am glad to hear you are home surrounded by family and friends. You will be in my thoughts and prayers. My our Lord, Jesus Christ, continue to strengthen you with his graces.

[Linda]

I know you have been through so much. I pray that your strength will continue. You are always in our prayers. I pray for the Lord's peace to be with you.

[Ruth Cuadra]

Dear Friends,

I got a message this week from a friend of Loretta's informing me that she passed away on June 17th.

I had the good fortune to meet Loretta last year in Nashville at the annual AA&MDSIF patient conference. At that time I recall she was glad to meet others dealing with MDS and was hungry for knowledge about the disease and treatment options. I remember her bright smile and positive attitude. Loretta attracted friends and admirers--me among them--during that weekend conference.

Here are some words about Loretta from her friend:

"Loretta was a glorious fighter. She was gentle and strong at the same time...Her smile and laugh were always from the heart. Loretta remains in my thoughts today and always."

Let's continue the search for a cure for MDS and all bone marrow failure diseases in Loretta's honor.

Sincerely,
Ruth Cuadra

[Tom M]

Once more, a member has moved on to eternal life in Christ. Loretta will be in my prayers.