February 24, 2005 at 5:59 pm #4282
I don’t see irregular chrom. on the staging charts. What does it mean to prognosis when you have irregular chromosomes? I can’t understand my pathology report. Wish I could stage myself. My husband tells me to stop trying to doctor myself! I am still my best advocate, I believe.
My concern is that I will not be able to fight breast cancer, I have recurrence so there is no cure just stability. 40% of us have brain metastasis (often w/o symptoms, hence yearly brain MRI). Herceptin, our miracle drug, cannot get past the blood brain barrier. But without the herceptin infusions every three weeks, I know I would not have survived. I am wondering if I could have any treatment for MDS and still be on herceptin.
I think that now BC and MDS are going to vie for position to due me in!!! I have never been good with a three ring circus. I am very good at keeping one ball in the air, not two!!
I need to DISCIPLINE myself to JUST working on the next thing. The next thing is seeing my onc. on Wed. for my herceptin and asking the questions about MDS and wait for his answers.
So really, I have not a thing to do about all this until Wed. Sooo I have a free week=end to celebrate my grandaughter Isa’s 5th birthday and enjoy life.
Hope you all are enjoying your day!
Thanks for being there. I am afraid in the days ahead you will be hearing a blow by blow. Hope you’re up to it!!!
Hugs, LolaFebruary 24, 2005 at 8:42 pm #4283
Yes We are up to it.Your situation is definitely complex. So glad you are enjoying your day. That is one of the best things for all of us to do.February 24, 2005 at 8:55 pm #4284
Bill and MaryMember
I can only parrot what I’ve read. The significance of the chromosome rating depends on what it is. The AA-MDS MDS Basic Explanations, pg 4, says “Certain types of defects, such as isolated loss of the Y, 5q, or 20q chromosomes are also associated with a better prognosis, and with a mild or less severe form of MDS. Abnormalities of chromosome 7 or complex chromosomal changes, defined as three or more chromosomal defects, indicate a more severe form of MDS”.
While I’m sure others can give you a lot more information, I think it basically is a way for us to get a number from the IPSS rating system that we can then use to get a handle on the severity of our disease and our life expectancy.
BillFebruary 25, 2005 at 1:03 am #4285
We all just take it one day at a time sometimes,it’s all we can do. I wouldn’t get to involved with the chromos Ron had no abnormals etc. and didn’t do a thing that the charts said he should. Sometimes a specific drug is targeted to the abnormal chrom and it works better. So, everyone is different as they keep reminding us.
Hang in there. BarbraFebruary 25, 2005 at 4:32 am #4286
The only thing I know about abnormal chromosomes is if you ever look for a bone marrow donor it will make a match harder. So sorry to hear about you having to battle both the return of your breast cancer and MDS. May I ask how old your are? When did you first start treament for the breast cancer? Good luck with any treatments you decide to continue or start!
God bless PamFebruary 25, 2005 at 5:47 pm #4287
I just want to say I really admire your strength and your courage – you certainly have a lot on your plate right now. Those pathology reports can sure put your head in a spin – terms I’ve never heard of, confusing, to say the least. Anyway — I’m so glad you found this forum Lola, no one should be alone to deal with all this crap.
How wonderful you can relax this weekend and just enjoy your grand-daughter’s birthday, Have fun!
Hugs right back to you,
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