How long can my mom last?

[Debe]

My mom is getting weaker and weaker. She is gettin transfusions of rbc and platelets every 7 to 10 days. Last week her blasts in the peripheral blood were 23, this week they are 55. Her white count is 12. Do the blasts in the blood make the blood flow slower and that is what is making her weaker? If her blasts keep going 25% higher each week, does that mean when she gets up to 100, that she will die? Can someone explain how this works?
The hardest part of all of this is that she is not ready to die. I don’t know what to say to her.
What will happen, is there pain? Will she just go to sleep? I know these are awful questions, but I can’t really talk to her doctor, we really don’t care for him, my mom is his only patient with mds, he told her two years ago, she would not live 6 months.
Can anyone help? Thanks, Deb

[Donna]

Hi Debe, I’m so sorry you’re going through all of this.
My mom lost her battle with MDS last summer. I don’t know anything about #’s, I know lots of people here do, I’m sure they’ll be able to answer some of your questions. It’s so hard if you don’t have a dr that is an MDS specialist — can you see someone else?. Especially if your mom is not happy with him and she’s not ready to give up. Look up the Centers, see which one is closest to you, I’m not sure how it works – I imagine you need a referral from her current Dr. The fact that she is his only patient with
MDS would make me nervous, does she know her classification? There are a lot of treatment options, never give up, please, try to see a specialist.

Everyones experience with MDS is different.
My mom’s passing with very peaceful, but she fought a very hard battle. She was a very strong woman. Unfortunatley, her type of MDS was very aggressive. She didn’t see a specialist, I don’t know how different things would’ve been for her had she decided to go that route. My main concern was supporting her with her decisions and loving her.

Take care Debe,
hope you find some answers soon.

Donna

[Terri]

Debe, I am sorry your Mom is not doing well, I see your Mom did one round of Vidaza, Is she stopping?? Bob’s MDS is RAEB-T and When his WBC starts rizing we know something is awry. He was pretty stable and then in August again his Whites started slowly increasing and then the blood smear the doctor looked at in November showed the cells were starting to be abnormal again, Dr did the BMB and sure enough 14% blast so he is back on the vidaza. His Whites are normal and so are the reds, hgb still low but not where he needs tx.
Is your Mom taking any treatment, What About any vitamins and supplements. Our Doctor is trying to be Agressive with this treatment but not to the point of the heavy treatment, he does not feel Bob is at that point yet.

I hope your Mom starts getting some relief.

[B. Greene]

Debe it sounds like you are about at the same spot we are in. Ron’s blasts in the blood are just galloping they went from 22 to 43 last week.
You are asking the same questions I am afraid to ask especially in front of Ron.

Terri, our Dr. told us we couldn’t try Vidaza as the blasts were too high to qualify. Does this sound right to anyone else.

The only thing our Dr. said was when they get too bad, duh, we should think about the hydroxyurea as it was the easiest way to go.

I’m quite to the hair pulling stage and so damn scared. Barbra

[Debe]

Terri, Vidaza is out of the question for my mom, she did not do well, got very sick and was in bed for two weeks after the week of treatment.
Gosh, Barbra, I did not know Ron’s blasts were that high. I missed that somehow.
I am afraid of the answers too, but at the same time, I want to know. I am like you too, not wanting my mom in the room, with these types of questions, so I thought this would be a great source of how to go about it.
thanks girls for your replies, Deb

[Terri]

Debe, I Hope things get easier for you and your Mom, This disease is so terrible how it effects everyone so differently. I am scared all the time even though right now Bob is doing ok, except a little depressed. He has no clue how to find this forum and I want it like that, I need all of you for the support and information but I think all the ups and downs on the board would make him worse.

I will continue to pray for everyone

[Cindy]

Have you gone to the Center of Excellence at the University of Nebraska in Omaha. They are very informative and helpful.

Good luck with your mother.

[Debe]

We did go to Omaha, mom saw two different doctors there, that was in the beginning. They wanted her to do the heavy chemo at that point, she was not having any transfusions, but had alot of chromo abnormalities. She opted not to do that. She made it since August of 2002. She has had two pretty darn good years, when they all thought she would be lucky to survive until xmas of 2002. So we have been fortunate. Things are not looking to good now, and there always is those questions of whether she should have or shouldn’t have with the chemo, but we all have to make choices. And that is what she chose. It might have been denial too. Anyway, I know there is not alot of options out there, I just wanted to hear that she would just go to sleep and not wake up, I guess that is what would be easiest. I lost my 20 year old son 5 years ago, and I know losing my mom will be different. It is the correct cycle of life, to lose a parent, not to lose a child. So I guess I see things a little different than the average person, but I don’t her to suffer. I don’t want her in alot of pain. Deb

[Suzanne]

I think you and your Mom should talk to the Dr’s that care for her about your thoughts and wishes and determine where she will be and who will be in control of administering drugs. If she will eventually be in a hospital the Dr’s there can often administer enough drugs so she is kept comfortable. The same if her last days will be under a Hospice organization. Many doctors in my area suggest that hospice be contacted when they can’t do anything more for the patient.

[Sally_McNamee]

Dear Deb,

I know how you feel about wanting to know what’s going to happen. I’m going to tell you about my mum’s death. I’m telling you all this in the hope that it will help you prepare – as much as we can ever prepare for the loss of a loved one. I have to qualify this with the comment that not all MDS patients are the same, and there are no guarantees. But the best we can hope for is that if it’s going to happen, death comes with dignity and peace.

3 months before my mum died last March from RAEB/AML I asked her consultant what would happen. She said that gradually her body would shut down and she would begin to sleep herself away – and I remember very clearly her saying “that is the kindest thing we can hope for”. This is roughly what did happen, although she had some awful skin involvement and did suffer for a while, but the last 5-6 weeks were very peaceful, and she was kept comfortable. She had a collapse on the friday, and didn’t wake up again after that until she died sunday evening, 21st march.

I held her hand as she died, and in the last minutes she opened her eyes and looked at me. I don’t know if she knew I was there or not as she struggled with her breathing. Although at the time holding her hand while I knew she was dying was so hard that I didn’t think I could do it, afterwards I felt priveliged to have been with her and helped her in her final moments. I now feel that it was possibly one of the best things I’ve ever done. Isn’t that strange?

I hate MDS, and I hate the way that she suffered. But I’m glad I had those last few peaceful weeks with her.

Sally

[sarah]

Deb, keeping you and your Mom in my thoughts and prayers. I was touched by Sally’s previous post, hope you are as well.
Take care,
Sarah

[Donna]

Wish I could’ve been there to hold my mom’s hand, I got to the hospital 2 minutes after she passed. She was with the nurses.

d.

[KATHY1]

Deb, My mother’s situation sounded a little like your mom’s. She also had a doctor with not many MDS patients(if any). She was not ready to die and fought til the end. When my mom passed away in October she hhad gotten an infection in her lungs after 1 round of Vidaza. She was on a ventilator for about a week. When they took her off her lungs began to fail after two days. When she really began to struggle the doctors did give her medication so she would not be in pain. I thank God that my dad and all six of her children were there not only for her last moments but for her last week.

Wishing you peace. You’ll be in my thoughts.

Kathy

[Debe]

Thanks for all the responses. I have been staying with my mom for the last two days and I am getting ready to go back there today. She is having a bleed in her mouth since yesterday, not alot, but constant. I will be taking her back to the hospital and maybe they can get it to stop, the platelets don’t seem to be working when she receives them. She is having pain on her left side and I imagine it is the spleen, it is quite swollen.
I will be there for my mom, and for myself. I hope and pray I can hold her hand as she is leaving this plane, to go meet my Matthew.

[concern]

Hi Debe,

I lost my dad last october. Just pray real hard and give your mom moral support. My dad was just 68 and he was not ready to give up the fight.. and neither was I. But, being by my fathers side through out helped ease my pain a bit and also for my dad, he felt better having me around. I think its really important to let your parents know that they are dearly loved.

Concern

[Author]

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