MDS to AML Frustrated & don't know what to do next

[Mimi C]

My Mom was originally dx 77 years of age in Jan 09 with MDS. Treated with Vidaza for 6 cycles with no improvement. Went to a clinical trial in October - February. No lasting improvement. Bone marrow in Mar 10 showed 30% blasts. Monday 4/26/10 blood results showed increasing WBC to 13 with 70% leukemic cells. In hospital since 5/1/10 with pneumonia. WBC now at 37.5. Other levels falling quickly. I am having the worst time getting through to the doctors here to get transfusions started. They work with hospitalists which is a doctor supplying company contracted to the hospital. We need transfusions no doubt but does anyone have any other suggestions? What happens when the WBC continues to climb?

[rhutch01498]

Mimi,

Has your mother tried Dacogen? if you google decitabine aml there is some info out there. best wishes.

[Mimi C]

RHutch,
Dacogen was discussed right after Vidaza didn't work. I will bring it up with the ongologist tomorrow. Thank you for the information. It looks promising.

[Mimi C]

The new hospital rounds doctor came in today and all he wanted to talk about was death and signing a DNR. I had to actually run him out of the room. Then the oncologist came to the room and continued to spew doom and gloom after which he says he does not treat AML patients. Great. Thanks for stopping by.
Mom's counts were a little better today. The pneumonia is a bit better too. She is still having fevers though.
We are going to have another oncologist look at her file and give us his opinion. We're considering going to another city for treatment but first we have to beat the pneumonia. The doctors do not want to transfuse until Mom's HGB falls below 7 and her platelets fall below 10. Her counts today:
plt 15 wbc 36 hgb 9 hct slightly above 25 and rbc 2.45
They keep saying it could make things worse.

[LynnI]

I am sorry that your mom and you are going through this. If possible I would suggest MD Anderson, they are well known and respected for MDS therefore I am assuming also excellent for MDS/AML.

Good luck.

[Mimi C]

We were at Baylor from August to April with Dr. Fay. He transfered us back to the original oncologist this past week. He doesn't have any treatment for her.

[ann]

Mimi, which Baylor are you talking about? We are very happy with our oncologist here in Fort Worth but we went to Southwestern Medical Center in Dallas to get a second opinion last yeara when my husband was diagnosed with MDS. He is doing well on Vidaza, just finished his 12th or 13th
round and his counts are good. He is watched very closely and for this we are thankful. I hope that you find an oncologist that will listen to you and give you some answers. M. D, Anderson in Houston is good, but I think there are other places nearer that you should look into. I hear there is a good hospital in Okla. Good luck and God bless. You and your mom are in our prayers.
ann

[Mimi C]

We got out of the hospital on Thursday. Pneumonia at bay for the time being. We went to Longview's Cancer Center in Texas yesterday (Friday) and saw a very nice Dr. Koya. He is giving mom Hydrea (w/Allopurinol) and we are waiting to be transfused as I type this. We are back in Texarkana. Strange that we had to go all the way to Longview to get to a doctor that would transfuse us in Texarkana. Mom is taking potassium as well to help with her energy. She's very, very tired but still in good spirits. She's kind of sore all over too. She's on so much medication and much of it needs to be taken separately that we are going to make a chart to help keep track. If anyone has anything like that already set up please send it to me or send the link.
Our onocologist is done with us. Apparently when I asked for a second opinion he got his feelings hurt or something. He had told my mom to call hospice and go home to die. AND he told her exactly how she would die. I guess since we didn't do what he said it insulted him. Before he came through to spew his death crap the hospitalist came through and gave my mom a 10 minute speech about getting her affairs in order so the state didn't get her assets and to fill out the DNR because she won't want to be resussitated. He told some horrible story about someone that didn't listen to his "get prepared" speech and died. I walked in for the last 2 minutes of his bizarro blabbering and had to tell him to move on. We got a different hospitalist the next day who cared enough to help us get treatment elsewhere. He expedited sending her file to Longview and we were at the cancer center the next day.
My brothers are here and one sister is too. The other will be here Monday. We are all very involved in Mom's care. We realize that AML is not curable but we want our Mom to be comfortable and stay with us as long as she can...comfortably.
Lessons learned: Never leave your loved ones in the hospital alone for one second. Never take the advice of doctors who do not care or that do not know enough about the disease.
Please continue to pray for my Mom. We love her and need her--she is the glue that holds our family together.

[Birgitta-A]

Dear Mimi,
How terrible with the oncologist talking that way to your mother ! In Sweden all doctors are taught that they should answer the patients questions but never force info over the patient if she/he hasn't asked for it. Nobody should take away hope that your former doctor tried to do.

Good that you found a new nice doctor!

Hope Hydrea will have a positive effect!
Kind regards
Birgitta-A

[Neil Cuadra]

Mimi,

I'm sorry your mom had to go through that.

When patients have a choice I think they should drop any doctor who doesn't welcome a second opinion. Being open to a second opinion shows that the doctor wants what's best for the patient, not what's best for his (or her) ego.

[rose mcmillin]

Originally Posted by Mimi C

My Mom was originally dx 77 years of age in Jan 09 with MDS. Treated with Vidaza for 6 cycles with no improvement. Went to a clinical trial in October - February. No lasting improvement. Bone marrow in Mar 10 showed 30% blasts. Monday 4/26/10 blood results showed increasing WBC to 13 with 70% leukemic cells. In hospital since 5/1/10 with pneumonia. WBC now at 37.5. Other levels falling quickly. I am having the worst time getting through to the doctors here to get transfusions started. They work with hospitalists which is a doctor supplying company contracted to the hospital. We need transfusions no doubt but does anyone have any other suggestions? What happens when the WBC continues to climb?

Hi Mimi, So sorry to hear what you, your Mom and family are going through. I just wanted to tell you that doctors said my husband had eight months and its been 2 years and he is still on treatment. I am glad that you stood firm. I have to wonder what some of these doctors are thinking.This disease is unpredicable so much so that the docs don't really know everything there is to know. Keep your hope and take care of yourself as well. Rose

[Mimi C]

Mom's regular doctor (Kempson) just didn't have the time to see her yesterday...not even a quick 5 minute deal and he's off today. She is retaining fluid to the tune of about 8-10 extra pounds. Thankfully I have a wonderful PA that was more than happy to see her today. We are now on Lasix for the fluid retention. It was so bad that Mom was having a very difficult time breathing. I'm making a list of people that suck and her former oncologist and regular doctor are top on the list.

Mom's counts: Wbc 113, Rbc 3.3, Plt 38, Hgb 11.1, Hct 32.5. The transfusion we had last Saturday is doing good. The white blood count is obviously way elevated and giving me great concern. We are on Hydrea to lower the WBC but it hasn't taken hold yet. They say it takes about a week to build up and kick in. Any suggestions? Thoughts? Things to watch for?

Mom's potassium level is only 3.3 but that is up from where it was. We are taking extra now to also help compensate for the lasix. She is very tired.

[run4peach1]

kind of followed the same path your mother is on. I don't want to act like a doctor, but I am not sure as to why they give your mom hydrea? My father's first problem was that he had too many platelets, for which he was given hydrea.

Now, I know that hydrea not only lowers your platelets, it lowers everything else as well. I know your mom has too many whites, but is that a big deal in her situation? Is it worth lowering that if it brings the other counts down as well?

Again, I'm not suggesting that taking hydrea is improper. Like you have said, sometimes you have to question things yourself. I know they took my Dad off the hydrea when his other counts went down. I guess they felt like having too many platelets was the least of his problems.

Like I said, your mom's situation seems to mirror my father's. If I can be of any help, don't hesitate to ask.

I haven't posted on here for a while, but I just want you and all others suffering from this disease that you are in my thoughts and Prayers always.

[Mimi C]

My Mom passed away yesterday after a hard fight with MDS that transformed into AML. Her kids and husband were by her side--we surrounded her with love. It was so very hard. We miss her so terribly bad that words just cannot describe. I appreciate all of the marrowforum people that have offered suggestions and prayers. Our family will never be the same again. MDS/AML is a horrible disease.

[Gloria J]

Mimi,

No words are adequate to express the sorrow felt in times like this. My only wish for you is for the comfort brought by family and friends, and treasured memories of better times.

with my deepest condolences,

Gloria

[Neil Cuadra]

Mimi,

We are so sorry to hear that you have lost your Mom. Having you and the rest of your family there for her must have provided her much strength and comfort. We hope that memories of your best years together will lessen the pain and sustain you and your family.

Sincerely,
Neil and Ruth Cuadra

[Birgitta-A]

Dear Mimi,
How sad that your mother passed away though she was so brave and did fight her disease. Now she has got peace.
Warm regards
Birgitta-A

[Zoe's Life]

Mimi,

I am so sorry to hear of your mom's death. What a blessing that you all were able to be with her when she passed on. May God bless and comfort you through this difficult time.

Zoe

[launch]

Dear Mimi,

I am so sorry about your Family's loss. God Bless you all. I pray that your entire family is comforted by the Holy Spirit during this grieving period. I pray your feelings of "loss" are soon replaced by warm memories of your Mom.

Sincerely, Cindy

[LynnI]

I am so sorry for your loss.

[debbie2008]

mimi..


your mother was truly blessed in having you as her daughter in addition to her wonderful, caring family. i pray God gives you the strength you will now need. my husband died one year ago when his mds/mpd also transformed to aml. i know how hard it is for all of you and my prayers are with you.

[Mimi C]

The stress and fear of having a loved one diagnosed with MDS was huge. Looking back I now realized how stressed out I was. I expected my parents to get older but what I didn't expect is something so unheard of taking my mom from me and my family 17 years before her time. She had a goal. She wanted to make it to 95 like her mother did.
Not having control of the events that followed my mom's diagnosis was scary. I would love to go back and start the process over mainly so I could have more time with my mom but to also make it a better time for her. She endured shots, blood draws, bone marrow tests, days away from home-dog & family. I wished I had been a little less involved in my life and a little more involved in her's. Although, if you ask my husband he would say I was very involved but to me, it wasn't enough. I'm not saying I wasn't there--I'm just saying that I could have been there more emotionally and given more support. I feel like you can always do more--the words I gave it my all doesn't mean much to me. My mom would probably say I did enough. When your loved one is gone I guess its natural to feel like you didn't do enough. There's no way to make up for it now. I wish I had spent more time just sitting and talking. We did sit and talk but now that she is gone it wasn't enough. There are things that I wish I had written down or recorded because now I can't remember them. Maybe a few more photos would have been good although I can tell you that any amount wouldn't have been enough now. My mom told us about an hour before she left us that she was going to miss us all. I wanted to say more to my mom before she left but I was too worried that it would make her feel worse so I just kept telling her that I loved her. I sat holding her hand praying to God to pass her pain onto me so she wouldn't suffer--she seemed to be so uncomfortable and experiencing pain. Just 2 days before she told me she was going to get better. You see the thing about my mom was that she fought so hard and wouldn't give up. When we were getting out of the hospital this last time I asked her if she wanted to try another treatment and she said yes, she would give it another shot. That was 10 days before she died. The day after we got out of the hospital was her birthday. We made the trip to a new doctor and started a new treatment. The treatment wasn't going to cure her and she knew that. It was designed to give her more time...to give us more time.
Hospice came in for about an hour or maybe 2 before she passed. One of the RNs asked who my mom was waiting for. We were all there, there wasn't anyone else to wait for. I truly believe that my mom thought she might be able to pull out a few more days or weeks and it wasn't until she realized that she wasn't going to get any better that she let go.
Things you don't think about until they are gone: Their voice, their scent, a hug, a kiss... I'm not sure why I deleted all of my Mom voicemails a few weeks ago. I usually keep a message or 2 from loved ones. I'd like to be able to hear "Hey Meem, its Mom" as if I wouldn't know who it was. That voice is gone forever except in my head. I still have a hard time believing she is gone.
I miss my mom.

[bebop]

I am so sorry for your loss. I am a newbie here but I am going thru mds with my Dad. I imagine all that you have gone thru with her in him. I am spending as much time as I possibly can with him doing all the things he loves to do. I know I am already feeling I am not doing enough. His hasn't gone into aml yet but he is severe transfusion dependent and not doing treatments. He will be 81 in August. He is so tired of drs and just wants to go. May I ask how long ago she went into aml? I am here if you need to talk ever.
Elaine

[run4peach1]

sorry to hear of your loss. My father passed away a little over 4 months ago, following the same course of your mother. He was 79.

Sometimes I do feel the same way as you; could I have done more, etc. From my experience, I can tell you not to feel that guilt. Trust me, you did all you could. Sometimes the disease just wins out. My Dad got a lot of bad breaks during his disease. Pnuemonia 4 or 5 times. The last one he just couldn't beat. It was very difficult observing him withering away. I know exactly how you feel. My father passed away in the IC unit........I'll never forget the "code blue" call going out over the intercom......the doctors running in.......me right behind them. Deep down, I knew it was for him. He told me the night before. He didn't say anything, but I saw it in his eyes.

Enough about me. The best advice I can give you is to hold onto the good times. I spend a lot of time with my Dad in the 40 years I had him. Lots. Way more than most people ever get to. It's not because I had to, it was because I enjoyed his company. Sounds like you got to spend a lot of good times with your mom. Cherish it. Don't regret what you didn't do, cherish what you did.

If you ever need to talk, feel free to send me something.
As always, everyone involved in these diseases are in my Prayers.

[ann]

I am so sorry for your loss. It is never easy to say goodby to someone we love, but to a mother is seems doubly hard. I said goodby to my dad 6 years ago and I loved him so much. When my mom died 3 years ago, it was like losing a part of me. She was my best friend. I still miss her and don't think a day goes by that I don't have a memory of her. It gets easier but the memories will never leave you. I still have my mom's phone number in my phone. Just can't take it out.
I am fighting MDS with my husband and he seems to be doing well. Good weeks and bad weeks and I know I will not be ready when his time comes. We are trying to enjoy our life together as much as we can.
God bless you and your family. I will keep you in my prayers.