saw doc about dad's blasts

[karenkay]

We saw dr. z yesterday and I had called and talked to him before the appt. and told him I wanted no gloom and doom for my dad. He respectfully agreed to abide by my wishes.
Once we got there, he did take me out in the hall and told me that the AML is there and it is not going toget better. I asked about any treatment at all or a BMB and he said a BMB would just confirm his prognosis and would be a discomfort for my dad. He Said no treatment really, but he did start him on procrit to try to help the hbg and also mentioned hydrea.
His peripheral blood blast count is now 18%. I don’t know when you guys talk about blast count if you mean from a smear or BMB. I know there is a difference.
He told me I could go to 10 oncologists if I want to (he wasn’t rude or a jackass today, he was very good with my dad and me) but it won’t change the outcome. He said 1-3 months really.
My dad asked me later why the dr. took me out to the hall and I told him it was about the procrit. I said that it might not help, but I told the doc I wanted to give it a try anyway. I also told him his WBC is up and we need to keep an eye on it.
Today, he is still in pretty good spirits, but he wanted no therapy, we barely got him to do any, and he is tired. He has had some long days, but he just seems to be going down hill again. Not as drastically as before, and I will wait to see how he feels tomorrow.
I will still see the new doc next week, but I have to say, dr. z was pretty good today. He respected my decision on not telling my dad today and he did talk directly to him and me. He didn’t seem to be holding a grudge.
I am going to keep dr. in my prayers, as well as all of us.
I don’t want to believe what this doctor is saying, but he seems pretty damn sure and I don’t know when to start letting this man understand more about his condition and when to keep quiet.
Right now, I think a second opinion is in order. I will wait until the 14th and see what the other doctor has to say.
God bless us all,
karenk

[Donna]

Hi Karen, I’m sorry that things are not going so well for your dad. I have to ask though, does your dad really not want to know, does he want this information kept from him??. Or – is it because of his depression that he’s not being told?. I know everyone is different, I’m just curious. With my mom, she was the opposite wanted nothing but the cold hard facts, nothing sugar coated and would never ever allow any one of us to speak with her Dr without one of us there, she would’ve had a fit!!

Mom was given 6 months to live, she lived for a little over a year, without any treatment, really I think she made the best decision for her I think had she decided to try chemo, that year she would’ve spent in the hospital sick from the meds, at least she was able to enjoy the year out of hospital, she went into the hospital the day before she died. Everything was done her way and for that I feel good.

I understand we are all different, I was just curious as to why your dad isn’t involved in his own care.
Perhaps I should read your other posts.

Take care,
Donna

[karenkay]

My dad has dementia right now, is depressed and doing very well. Right now, it would serve no purpose to tell him, but he is going to be told.
I know I have to let him know, he is just so confused right now, all he would remember is “leukemia” and he would give up everything.
I am trying to wait until his friend Kathy gets here and he has the support he needs.
It could be a mistake, I know that, and I am wrestling with it very much. But right now, he is feeling so good.
Thank you for your insight, I know I have a lot to do.
God bless us all,
karenk

[Neil]

Hi Karen,
A couple thoughts.
At some point caregivers of an MDS patient must channel their efforts toward the quality of life of the patient. The patients comfort and well being are the most important factors. All the drugs out there will not help. A very tough thought to ponder, but at some point realism must set in.
A patient with excess blasts has a very difficult time. If the docs cant get the blasts down or at least stable, the decline is inevitable.
Think your blast question involves where the blasts are present. They first appear in the marrow. This is the point where the docs try to keep them from increasing or better yet to decrease them. The next part of the progression is when the blasts appear in the peripheral blood. There have been some cases where chemo has helped both those with blasts in the marrow and peripheral blood—-for a while. The chemo can be devistating.
When you get the second opinion think about this. Ask this doc how he would proceed. If he gives you a poor prognosis, ask him about how to proceed with a plan providing the best quality of life.
Your dad has had a very difficult time. You have been his best advocate and have battled very hard to make sure he has the best options available.
Think about it.

[karenkay]

thank you Neil,
Yes, I am coming to see that my dad is not going to get better. I have talked to some places about hospice care and I need to talk to his doct. about doing a consult for hospice at the VA. I just want him to be comfortable and make some peace with some people if he can. He has not had an easy life.
I did tell him yesterday that his MDS is progressing and that means we have towatch out for infection and that his body isn’t strong enough to take the chemo that would help his situation. I didn’t say leukemia, but he knew what I was talking about, that he is getting worse.
I know this because he asked to see my mom, who he has been estranged with for over 20 years and my sister who he hasn’t seen for two years. He aslso spoke to the counselor about my brother who died 14 years ago. He never tells people about my brother/his son.
I think he knows.
My only hesitation with hospice is that they won’t even give him transfusions for the RBC count I don’t think. That will just make him so weak and all.
I am so sad right now.
Thank you for the support.
God Bless,
Karenk

[Neil]

Hi Karen,
Once you commit to hospice all treatment will stop.
They will do everything possible to keep him comfortable.
Am assuming he has Medicare Part A. If so it will cover the cost of hospice. Not sure how this is handled if the VA is involved. If he has TriCare For Life thru the VA all costs will be covered thru that benefit.
If you phone 208-381-2789 ( in Idaho) you can get all of the info plus a list of hospice agencies,
I put my Mom on hospice and it was truly amazing how they handled her needs. The volunteers, aides, nurses, music therapists etc were always with her. She was calm, pain free and totally comfortable. Keep in mind her doc has to recommend hospice and is involved in setting up to care process.

[ww5]

Karen,

My husband was about the same age as your Dad and progressed recently from MDS to AML. Your Dad knows he is gravely ill and the news about AML will not be a surprise. I know my husband appreciated the 3 weeks we had when we found out the AML remission from the chemo had failed and he had a high level of blasts in his perpheral blood. There were no more options. We opted for hospice at home–he was very happy being in his own bed with familiar surroundings. We had a normal evening last night–ate, chatted, and went to bed as usual. He died early this morning in his sleep. Get a copy of the book “Final Gifts”. It really helped me put all of this in perspective.

[Luke and Margaret]

Hi Karen
Luke thanked his doc on his last day for being forthright and telling himexactly what was going to happen. He told the doc that it gave him a chance to prepare himself, and to spend time with his family.

My knowing what was going to happen allwed me the same chance.

Each person is different, and each person probably has a different need at this time, but it might be helpful to know how others dealt with this. I do think that a part of Luke gave up the fight once he knew, but he gave it up on his own terms and put his house in order. The end, when it came, was therefore gentle.

Good luck, Karen. I know exactly what you are feeling, and it really is hard. (((Karen)))
Margaret

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