Nellie's Journey on Vidaza

[Dick S]

Originally Posted by ESeda

Well guys, lets crank up the prayers, we are going to need them.



Eli

You got 'em. Give Nellie a kiss for us.

[Birgitta-A]

Hi Eli,
You know it is very difficult to compare the reported results from the 3 treatments you wrote about because the patients in the studies can be MDS patients with a better prognosis or AML patients. I can't find any new studies with CECA.

FLAG MDS/AML patients
Complete remission rate 71%
http://www.uptodate.com/patients/con...IPdQ&refNum=67

CLAG AML patients
Complete response occurred in 44% of SC patients lasting a median of 222 days
http://abstracts.hematologylibrary.o...urcetype=HWCIT

CECA AML patients
3 complete remissions in 25 patients (12%). This abstract is very old (1998) and at that time the supportive therapy was not as good as it is today.
http://www.epidna.com/showabstract.p...terms=ceca+aml

Hope your doctor chooses a treatment with good results and few adverse reactions!
Kind regards
Birgitta-A

[ESeda]

Thanks Brigetta, the info you gave me matches the paper copies Dr Morris provided for my study of the treatments. Looks to me like FLAG is the proper direction to take.

Dick thanks also for you sweet thoughts. Glad there are people like you on the site offering your prayers and support, THANKS.

Scary time yesterday at the hospital. Nellie had been feeling really sluggish and weak the last couple of days. I realized her reds had dropped, we were expecting that. Last Thurs they were at 8.5. So I called Dr Morris' office and was told to bring her in right away. So I did. Dr Morris could see by her skin and nails that it was time for more reds. So he called the hospital and requested she be admitted for tx. The reception was great. All the nurses and techs that knew Nellie rallied round her to welcome her back, it was a fun time.

Our nurse for the day was Brianna, and she quickly drew blood for CBCs, cultures and type and cross. Brianna had taken care of Nellie several days when in hospital prior. When the results of the CBC came back it reported her red count was at 10.3 ???? What? You say??? That's what I said, there is something wrong. I questioned Brianna and she assured me there was no mess up on her part. That there could not have been a mixup. While talking with Brianna, Dr Morris called her checking on Nellies CBCs. When Brianna told him, he also said, WHAT?? There must be something else causing Nellie's weakness and we had to find out quickly what is going on.

Dr Morris order antibiotics stat, and some patassium as a preventive measure. Well later the hospital Dr, a lovely, sweet young Dr from the Dominican Republic who had monitored Nellie throughout her Induction Therapy came by to check on her agreed to order another CBC, after we explained our concerns and fears. Those results came back at 7.5. Brianna now was suspicious of both results and order a third CBC that confirmed the 7.5 results from the second. Overall there was a delay of about six hours in getting the reds Nellie needed so badly.

Most people would not have questioned the first CBC. The trust and confidence we place on the professiional at the hospital sometimes can come back to bite us in the _____. Scary, you know. Nellie received her reds, and is expected to come back home this morning. By the way her whites are at 3.2 and plts at 35. So we get to enjoy another weekend at home and back to hospital on Monday for continued treatment.


This is a good lesson for all my friends on Marrow Forum, request copies of all you lab results, even when in the hospital. Make sure your Dr writes a standing permission, and the patient also, to give copies of all lab work immediately when they are available. You need to be familiar especially with the CBC report and play an active role in monitoring what is goning on. You never know when it could save your life.

Well, gotta go get ready to pick up my sweetie. She is feeling really good again and wants to come home.

Keep praying and fighting for life, lets do it together.

Eli

[Neil Cuadra]

That's a frightening story, Eli. You saved the day by being there and by knowing how to read the signs of Nellie's condition.

I agree that patients should make sure to get copies of their CBCs and have the doctor pre-authorize it. That's what we did. Watching the CBCs, just as the doctor does, lets you see the long-term trends as well as anything that changes noticeably from one test to the next.

Medical testing isn't infallible, and neither is our intuition, but it's important to speak up when we think something is wrong. The doctors know more than we do about the workings of the human body, but caregivers are the best observers because we spend so much time with the patient, while doctors have only a few minutes with them at a time.

[Joan]

Interesting that doctor didn't suspect mistake. Similar thing happened to Don when he had blood work done prior to seeing doctor and his hgb had gone up to 12 something. It hadn't been that high in years. Doctor immediately ordered another blood test and had us wait for results. That time hgb was more in line what doctor and we expected.

[ESeda]

Hi all,

Nellie stared round two today. FLAG, is the regimine she is on. She gets neupogen, before, during and afer chemo drugs. each day for five days she gets, thirty minutes of Fludarabine and two hours later, forty five minutes of Ara-C, at the same time each day. Also she will get saline, potassium, magnisim, antibiotics and tx of blood and plates as needed.

Apreciate your comments Joan and Neil. Fortunaely they finally got the labs right and Nellie got her reds and was able to go home Thurs morning. She had a nice weekend, got stronger and was ready to go Monday. We had to wait until five PM before a room became available on the onch ward. I am amazed to see how good she looks. CBCs: Hbg nine point nine, whites three point nine, and plts are twenty nine.

A gentile man named Paul, a prostate cancer survivor, was just here to visit the room he spent one year fighting for his life, and won. After he left, those left in the room, Nellie, Julie my sister, Hermas her husband and I thought, hum,,, maybe that was an angel. But he came back today with his wife and we had a nice visit. Told him this story and he said, maybe I am an angel. I hope he is. He wished us well and said to Nellie, you will make it.

Well, I believe in prayer and love the idea of angels. Thanks for all you angels out there who are praying and rooting for Nellie. Keep up the good work.

Eli

[ESeda]

Within hours of the first infusion of the new chemo drug Nellie's temp shot up to 104 and since then has run between that and 102. Finally this morning the fever broke and she got a reading of 98.2. All counts have had a sudden drop and she needed reds and plts. Whites holding at 3.2 with neupogen by IV daily. Not able to control urine and bowel movements. Having memory dificulties and just a general bad feeling. Not sleeping well and not very alert. Doesn't seem to have too much pain. Not on any pain meds except for 5mgs of Prednesone which she has been taking for years.

One of the nurses said that the more difficult reaction to the drug seems to produce better results.. Well, I hop so. Three more days of chemo left. Keep on praying guys, Thanks.

Eli

[Birgitta-A]

Hi Eli,
Good that FLAG treatment includes granulocyte colony-stimulating factor (in your case Neupogen) from start of treament! Then we can hope that the fever depends on something else than an infection.

The nurses should know if there is a connection between adverse reactions and good results. They have followed many patients during chemo treatment. I have read that if Revlimid decreases red blood cells initially it is a sign that indicates later good response.
Kind regards
Birgitta-A

[ESeda]

Nellie not able to tolerate treatment. High dose ara-C and Fludarabine too strong and causing terrible fevers and neurological eeffects. Also causing kidney failure. Treatment stopped. Dr says she cannot tolerate this treatment and there is likely no other remedy for her. Dr is concerned she will not recover from this effort.

She osolates between sleep and semi consciousness. Not able to speak in sentenses, lift her legs or recognize people. Dr says to prepare the family for option to resusatate. Don't know how much time we have. I am hoping she will recover some of her faculties well enough to have a nice Mother's Day, and maybe more. We sure can use a miracle about now. Thank you God.

Eli

[Ruth Cuadra]

Eli,

My heart goes out to you and Nellie. She is so lucky to have you and the rest of her family by her side. I'm sure everyone on Marrowforums is thinking of you right now.

Ruth

[Dick S]

Eli, I'll double my prayers tonight for you.

[launch]

Eli,

I'll say extra prayers tonight... especially for Nellie, you, and your entire Family. You and Nellie are so very lucky to have each other... you are true soul mates.... I too believe in Miracles.... through the Grace of the Master Physican... Our Lord & Savior...

and I also believe in Angels, and their ability to "Comfort" us when we need it the most.... I know you're surrounded by them right now....

God Bless....

Cindy

[Vera W]

Amen!

[Birgitta-A]

Dear Eli,
Nellie's fight has been very tough and you a wonderful support to her - I admire both of you!
Warm regards
Birgitta-A

[towncarlady]

Nellie's journey has become a part of my journey as well. I made the decision, after being offered Vidaza treatment, and after a less than successful treatment with Dacogen, to not begin Vidaza. Right or wrong...that is my journey at this point. I have chosen to monitor my counts, take Aranesp injections when needed, and if necessary, blood transfusions. At this time, I have been able to go two full months without a transfusion. Every patient is different, cirmcumstances vary, and each of us make decisions based on the little that is known about treating MDS.

I think I have chosen quality over possible quantity of life. I am 66 years old and still very active, despite my illness. As far as I know, only my red cells are affected with no sign of transformation. My MDS is genetic based (Trisomy8) I am hoping that many of the crazy side effects and illnesses that have resulted from the Decagen weakening my immune system will stabilize.

Each of us, both MDS patients and our caretakers lead a day by day life...never quite knowing what to expect. I pray for all of us that more research and a better understanding of MDS is just around the corner.

If anyone should care to e-mail me, my address is: leonettewalls@hughes.net.

[ESeda]

Than you all for your kind words and heartfelt words, they mean so much to Nellie and I. Nellie is improving very slowly. Speech and coordination poor, unable to walk on her own, however, slight improvments each day.

We will have to make more dicisions on what next in the near future. Maybe first a BMB to see if we have any improvment at all. Then maybe the Dr,s can come up with some direction.

Choosing what kind of treatment for this decease is so difficult. No treatment is a choice, as well as, taking treatment. Nellie wants to see more grandchildren, she is not ready to except defeat without a fight. Our hope is for all our friends on this forum, and elswhere to receive a miracle in what ever form, and beat this decease, whatever choice you make.

Thank you all for your prayer, keep them coming.

Eli

[Ruth Cuadra]

It's so good to hear from you again, Eli, and know that Nellie is improving. You're right that in addition to deciding which treatment to take there is the option to take no treatment at all. We are always here to support her--and you--no matter what decision she makes.

Regards,
Ruth

[ESeda]

Hi all, thanks for being here for us.

Nellie is still progressing, but very slowly. Whites still at zero. Today they will do a BMB to see where we are. Then we can see where to go. Keep on praying.

Eli

[Vera W]

Nellie is always in my heart.You two deserve the best! May God give you strength and Joy, Always..Love to you! Vera

[ESeda]

BMB results show Blast up to 43%. Options left: more chemo, which she cannot stand: stay in hospital for care: or send her home with Hospis help.

Dr does not give her any hope. Now we need a miricle.

Eli

[Ruth Cuadra]

Eli, our thoughts are with you and Nellie.

Ruth

[Birgitta-A]

Dear Eli,
I am so sorry to read that your brave Nellie can't stand any more treatment and hope that you both will have a peaceful time together.
Warm regards
Birgitta-A

[launch]

Dear Eli,
You and Nellie continue to be in my prayers... God Bless you Both... I continue to pray for a Miracle..... which I believe in... Cindy

[ESeda]

Nellie came home yesterday morn after a long process to discharge her. The more the delay, the closer to the door I had to move her in her wheel chair. We finally got home about 10:30 am.

Catherine, your words touched me in my heart. Thank you for being able to express so beautifully what I needed to hear. I am sad for your need to continue the battle after your loses. I pray for you a special prayer of healing and peacefulness. Thanks to all of you who have shared your thoughts and prayers. I feel surrounded by so much love and caring.

Nellie's first night home was scary. She suddenly developed a temp of 101.3. I was afraid I would have to take her back to hosp before she had a chance to spend one night at home. But I gave her some Tylenol and this morning her temp was 100.4. It was difficult to get her up this morn and I thought I would have to call 911. After checking all her vitals I found her sugar had dropped to 61. She had some OJ and coffee and now she is her old self joking and laughing with her daughter and friend. She still doesn't have the strength to stand on her own.

We need to get her to opus daily for CBCs and maybe blood or plates and neupogen shots. Not going to be easy, but if she wants to stay home, we need to be able to do that.

The light is still on. And as long as there is light, there is hope. (who said that anyway).

The doc has another drug they want to try, but I haven't had a chance to check it out. I need Nellie to understand the drug and it's issues and let her make the decision. Could not get a good answer from the Doc when I asked what makes this drug different from the others. Just another possibility. Well something to think about. Once I look up the info on it I will share with my friends on the forum. Dr Morris is going to the Orlando meetings this weekend and has hopes to learn something new. Me too.

Well, keep on praying guys, it ain't over yet.

Eli

[netsirk]

I am praying for you and Nellie... we all are.
God Bless you both.