Still waiting

[Lolam]

A panel of 20 discussed my case on Wed. at the Seattle Cancer Care Center. They said my onc. would get a letter right away…to me that would have been Thurs! Wishful thinking I guess.
Secondary MDS really is a different breed isn’t it? We rather doubt that they will suggest I get a BMT. He assured me though that I will advance quickly to AML. I am concerned about the maintenance drugs causing a BC relapse. I wonder what it would be like to have BC and leukemia at once. Treatments for one don’t like the treatments for the other. Sibling rivalry I guess!! :rolleyes:
He did say, all things considered for my specifics, I could have a year or two. I have been wondering how one prepares for that.. I am sure I will figure that out as I go..
Some of you seem to not be really ill all the time. I hope that I can still be up and about for a long time. I don’t like the thought of being confined to the bedroom….although I may just redecorate in there just in case!!
I follow your cases very closely. I hope that somehow this has been a good day for you all!!

[sarah]

Lola, Keeping you in our thoughts and prayers. Lets hope this panel of 20 is wrong about yourself. Take things one day at a time, will be praying for a miracle for you. Think postive!
Hugs Back,
Sarah

[Suzanne]

Lola, This has been a good day.Sun and breezes, birds and flowers! Sometimes things get better after the news is really scary.I can’t imagine facing what you are facing.Hopefully they will recommend a course of action for you. They may decide it is better not to do anything until you progress to AML.
I did visit someone from the forum a couple of weeks ago who was having chemo at Hopkins for AML and she had had breast cancer so she was dealing with secondary. Her bone marrow tests showed that she is clear of the bad cells after the first round of chemo so she is home now to rest and spend time with family before she goes back for her second round.
I was lucky in that I was able to stop taking anything-even vitamins when I was dealing with the drugs for this disease so there was no question of interaction except with the drugs they were giving me. One thing I can say that you mentioned. I never felt really badly even when my counts were really low. I was not overly tired and had only minor bruising with low platelets. I stayed pretty much away from places and people where I could pick up germs but no extreme precautions. My quality of life was good except for a very few days during the chemo.Different people react to the illness and the drugs differently. But I did not even know I had progressed to AML until a bone marrow test showed 75% blasts. I did stay “up and about” for the whole time so that is a real possibility.
One does find a way to get ready for that prognosis of short term survival in lots of ways. Say what you need to say and do what you need to do. They told me to “get my affairs in order” and I did.(It took a lot longer then I thought and kept me busy for a while but I don’t have a spouse -makes things a little more complicated) Then you can spend your energy on fighting the disease and enjoying your days and your family and you will feel absolutely marvelous when you get more time then you expected that you might.

[geebeebee]

Hi Lola,

Did they give you indication that they wouldn’t recommend a BMT? I’m just wondering because you are in a very similar situation to my Mom (she’s 65 — not sure how old you are?), and the doctors really strongly suggested a BMT. They wanted to do a BMT since she was secondary, and wanted to do it before AML, if possible. They, too, thought that it would progress quickly because of the secondary factor.

As you know, Mom did have a breast cancer relapse, although a different, less invasive type than she had before. She’s scheduled for a mastectomy on the 24th. She can’t quite kick this dang stomach virus she has…I know it takes a healthy person a while for those, and in her weakened condition, I think that it’s taking even longer.

I do hope that the report comes back soon with some choices. If they are negative on a BMT, and you’re still wanting to pursue, by all means keep pursuing it. And let me know if there is any information you’d like to have on Mom’s…hers was kind of a new deal designed for older folks, but could be suitable for anyone, I believe.

Take care, and hang in there,

Greg

[Suzanne]

If the Seattle Cancer Center is the same place as Fred Hutchinson, Lola has consulted the leading transplant center in the world according to the presentation I just attended on treatment for MDS. I think I would listen to their recommendations regarding that procedure. Sometimes we tend to look until we find an answer we want to hear.

[Terri]

I too will keep you in my prayers and hope that the doctors come back with some positive uplifting news.

[shirlsgirl]

Hi Lola,

I can’t imagine what you are going through right now. I hope you find out soon what the plan of action is.

It appears that your sense of humour is definately in tact.

Hang in there, hope you hear some positive news.

Take care, Jody

[gemloyear]

Hi Lola, I pray that every thing works out well for you. Keep up that great attitude.

Ellie

[Jimbob]

Lola,
Your attitude and support system are as important as getting the right treatments. You are going to beat this!

[gemloyear]

Lola, So happy things are looking up. It seems as though they are going to try their best for you. Your post today sounds really promising.
Good Luck, Ellie

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