Mom's Blood Numbers
 

Hi,

I didn't know what else to call this thread.

My mom has been out of the hospital for a month. The doctor has decreased her prednisone down to 10 mg. She hasn't started feeling dizzy or nauseous again yet.

I thought I would put her numbers out there and see if anyone can give me an idea of how she is. The doctor says she is plateauing.

WBC - 1.6
ANC - 1.1
HGB - 9.8
PLT - 16

She was just transfused yesterday, which beats her up. Two units of blood takes over five hours.

Yaka

No One Out There - Seriously
 

I am saddened and dismayed that NO ONE has replied to my post.

I just saw my mother and she is failing. We just called the dr. and asked that they push up her prednisone another 5 mg. Hopefully this will give her a boost.

I would like to ask that they give her extra platelets or wbc, they did it when she was in the hospital. I wonder why they don't offer it now.

My mother is failing and no one is listening. I thought I could find some thoughts here.

Dear Yaka,
I really can't say why no one has answered your post. I have noticed the last several days there has not been as much activity on the forums as usual. That may be part of it.
As none of us are doctors all we can give is our opinion about an individual's situation. You said your Mother is failing and it certainly does look like she is having a difficult time to say the least. We all want to encourage and support everyone as much as we can but I doubt anyone wants to give an opinion that could convey pessimism when we really don't know. I can tell you that at one time my husband was on our doctor's death list. Now 2 out of his 3 counts are normal - and his platelets at last check were 123,000. His all time low was 4,000.
All I can say is where there is life there is hope. If you are a person of faith that is one of your best sources of comfort. You are not alone even though it may feel that way. I know all wish you and your Mom the best. You are both in my thoughts.
As to your questions - I don't have any answers. I wish I did.
I hope saying this isn't outside your faith. If it is, just know it comes from my heart. God Bless - I wish you well.
Sally

Thank you
 

Your post has brought tears to my eyes.

It is just nice to have someone reply. I do feel alone. I am waiting to call my mom now.

Yaka

Dear Yaka,
Please keep us informed as to how your Mom is doing. Your post as of now has had 130 views. People may not know how to respond but I can assure you that every one of them is concerned and wants to know how things are going.
I know you feel alone but you're not. There are alot of caring vibes being sent your way.
Again, please keep us posted.
Take care,
Sally

Again, Thanks
 

Sally,

The prednisone makes a great difference. My mom was feeling better today, but I wonder at what cost.

Is it out of line to ask the Dr. to give her platelets or more wbc?

Any thoughts,
Yaka

transfusions depend on the counts. most drs are 8 or under. not sure about white cells as they are as I understand it harder to transfuse. I am glad she is feeling better! please keep us posted. You will find the support here you need. I am sure with it being a holiday weekend people were out and about.

Elaine

Yaka

In my experience the only blood product that helps with the way I feel is red blood. Sometimes when I felt really bad the Dr would order fluids, but this was usually due to other numbers being high. My liver enzymes or kidney numbers would be high. Maybe your mother is dehydrated, the worse you feel the less you want to drink.

In my experience it takes several days to recover from a red blood cell transfusion.

You are in my thoughts and prayers

Scott

Hey Yaka,
I am so glad your Mother is feeling better. And personally I don't think it's ever wrong to ask the doctor for anything.
He could possibly give your Mom a shot that we call in the states "Neulasta". It always brought my husband's white cells up although it may not work for everyone.
As for platelets, you don't want any more platelet transfusions than needed as they can at some point stop working.
Our oncologist told us that people perk up some with red cells but it was when their white cells come up that really makes patients feel better. That was the case with Don.
He is on a maintenance dosage of 15mg. of Prednisone and has been for a year. It's not a good drug to have to stay on but it does do wonderful things at the same time. Many on the forums take Prednisone for long periods of time.
Please keep us posted. So glad things seem to be improving.
Take care,
Sally

Hi Yaka,

I hope your mom will be better soon. Sometimes prednisone has side effects. because of this docs recommend diet program during prednisone treatment.

Is your mom on Vidaza or something like that now?

Hi, just wanting to ask whether your mum is having any active treatment for her mds or just supportive care ( ie just blood transfusions)? I am currently on my 7th cycle of vidaza and since the start my WBC have never been good. Currently my WBC are .9 and my nutrophils are .16! I was told they don't often transfuse white blood cells. Actually the highest my neutrophils have been is .7. I remember when I was first diagnosed all my blood counts scared me but now they seem "a new kind of normal" . What type of mds does your mum have? What is her blast count? It is a very scary disease but remember we are all out here!

Diets
 

My mom is not getting any treatment. She had Reblimid a few times. She did not respond well to it.

She can make it about two weeks with the prednisone. The 15 mg. seem to make the difference.

I will ask the dr. About the neutrophil. Anything to make her feel better. It is a fine line with the prednisone. I without it she feels terrible, but there are side effects of suppressed immunity. How do you choose?

As for the blasts, I have no idea. She was down in Florida when diagnosed and they never told me. I do know her IPSS score is Inte-3.

Thank you for writing to me. I am stressed beyond belief. Only my wonderful husband for support. My dad is pretty lost and scared.

Yaka

Hi Yaka,

Our situation seems like little bit same. Now I only have my husband to support me. We didn't told to my mum her illness.
She is not taking any drug (Vidaza or Dacogen). She just takes every week blood. But it is not real solution for this type of cancer. We afraid of drug's side effects. I'm looking some real herbal treatments for her.
But of course the best way must be her doctors recommendations. Trust her doctor and go with the doctor's way. My mum diagnosed two years ago and we use some herbal things and fruits. Grape is really very useful. I can recommend grape extracts.

Take care of you and your mother.

Roller Coaster
 

How my mom feels changes multiple times a day. It is her 62nd anniversary this weekend. I wonder how it is going to be.

Is this how the end begins?

hope
 

Hi Yaka,

There is always hope. My mom is taking every week blood transfusion. She has to take platelet too, but she has antibodies and she can't take but she is not bleeding according to very low platelet. So pray too much and believe that she will be better than now. May be it will be good for her to take some herbals or foods for immune system.

Believe me, I pray every day. When I call in the morning and she feels "fine" I am happy. But she gets depressed and tells me that she never feels great. The prednisone helps a lot.

This afternoon has come and now my mom is not feeling well again. She just informed me that she called the Dr. on Wednesday, but he never called back. She is angry, but she didn't call his office again. How do I get her to see that she needs to be more proactive or more importantly, let me do it for her.

Yaka

Yaka,

That's a tough problem because you dealing with very long-standing roles in your relationship. She's "the mom" and you are "the child" (no matter how old you are). The role reversal that it takes for a parent to accept their child's help is a tough adjustment, especially for seniors when they are already under stress and used to being more independent.

I think a gradual approach may have the best result. If yours is like many family situations I've seen, you can't take control -- she'll resent it -- but you can sympathize and be an ally, for example offering to follow up with the doctor if she didn't get an answer or a test result. After a period of getting your help in routine ways she may start expecting to rely on you more, and you'll be able to steer her into the best approach to take with her doctors.

I know it's yet another worry for you, but I hope your mom will learn to give you that new trust, and accept that you can help her take care of herself.

I have just been through the same dilemma and it was not an easy path. I'm not a tactful person by nature but I had to tread very carefully and sensitively. It was against my nature but I tried to learn to change my behavior so I could help my parents.

In the beginning I had no choice but to step in and take control and manage absolutely everything....I found that tiring but easier to do than later on when things were settling down and I could relinquish responsibility bit by bit.

In the end I simply asked if my Mum and Dad would tell me what they wanted me to look after and made them aware that I was happy to step back and be their support person if or when they needed it. Just today my Mum gave me Power of Attorney over her Health Directives in preference to my father who she thought (rightly) would be too stressed and confused to make decisions about her end of life care.

My father has also delegated some of his responsibilities to me for instance dealing with my mothers medical appointments, keeping track of the medical bills and paying them and also communicating with her doctors about treatments, tests and investigations.

The lines of responsibility have been marked out but I have made them aware that I am available for anything else they want help with.

There have been tense moments and lots of forced conversations but we got there in the end. My family have never been great communicators nor have we been touchy, feely but we all had to talk honestly about what we each expected from the other.


I sincerely hope that you can work out a way to deal with your issues too. It's not easy.

Regards

Chirley

Thank you for all your thoughts. My parents are definitely not ready to give me total control. They do let me follow up with the doctor.

Yesterday was my parent's 62nd anniversary. We went out for dinner together. Although it was early and didn't last long, I could see my mom struggling to keep her eyes open by the end of dinner.

Whenever we speak of transfusions she makes a face and comments about how she doesn't want to be doing this. I think she is hanging on for my dad. When I asked him if they have had a conversation about this, he told me that they haven't. He wants her to be with him as long as possible. I have to get my mom alone and figure out if she is prolonging her life to make him happy.

Every day this gets harder.
Yaka

I am so sorry you are going thru this. I lost my Dad last year to mds and while I fully supported him and went with him to dr appts and talked to the drs and asked alot of questions I left the decisions to him. My stepmom and I both did that. Do you live near enough to her to go with her to the drs appts?

I am very frustrated today. The doctor said that he wouldn't give my mother Neupogen or platelets. She is getting two units of whole blood today.

The doctor said that Neupogen is not used for MDS patients, but I am sure that when she had pneumonia they gave her that shot and platelets. I am very confused and depressed.

Yaka

MDS treatment
 

Hi Yaka,
It is easy to understand that you are frustrated.

Supportive therapy for MDS patients include platelet transfusions and Neupogen injections when they are needed. Look at treatment in this info from this site: http://www.marrowforums.org/mds.html#treatment

Then I wonder if your mother really is getting whole blood not packed red blood cells (PRBC). It is very uncommon and not OK for MDS patients.
Kind regards
Birgitta-A

Yaka, Paul was diagnosed in July 2012 with MDS. Shortly after diagnosis, he was prescribed Neupogen and G-CSF. Together, they have certainly helped to keep his WBC and RBC out of trouble. Platlets also increased last CBC from 24 to 40 for no unknown reason other than perhaps they because his other cells did not have to work so hard!! The injections along with anti-viral and anti-fungal tablets are the only medications used to 'keep him ticking over' until that perfect perfect marrow match becomes available.

Hi Sand I & Yaka,
In last 6 months my neutrophils have reached an all time high of .72 but mainly around the .2 mark especially for last 2-3 months and my WBC has been sitting around .8 . In all this time I have never been given a neupogen shot or any anti -viral or amtifungal medication. At first my doctor said no neupogen because have only had one severe infection needing hospitalisation and wanted to see if vidaza was working.When I asked again this week he said neupogen is only covered under PBS if I have a fever. In this time I have several bouts of oral thrush and a few courses of antibiotics for persistent sinus infections but absolute no fevers! Pretty good considering I have 2 children and am in constant contact with others! Interesting how different doctors prescribe different things.:confused: but maybe they have same guidelines where you are Yaka as in your mum could have neupogen when your mum had an infection but not just as a precaution?? Not sure about platelets though. But I guess the less transfusions she has the less likely she will become refractory to them?? Small comfort maybe??