NEW TO MDS

[Lolam]

I have just been diagnosed with chemo induced MDS which i understand is very rare. For the last four years I have been fighting Breast cancer. I had a recurrence two years ago. Therefore, I have had a lot of chemo to make me stable again. I have a rare form of BC as well with HER2/neu gene. I am on an antibody for that called herceptin. I was just floored that i now have MDS which seems way more dangerous as my doc. says no treatment at my age, 59. I am on B6. I am just anemic so far. I do have abnormal chromosome, missing 5 and 7.
I would love to talk to someone who also has chemo induced MDS, as i understand the prognosis for us is very grave.
Hugs, Lola

[Donna]

Hi Lola, sorry you had to find this forum because of your diagnosis – having said that, I think you’ll be quite happy about the wealth of info and support that you will find here. I’m quite surprised that your Dr is so quick to say there is nothing he can do. I think that there’s lot one can do. The one thing everyone will agree on is to find a dr who specialises in MDS and get yourself to a qualified center of excellence — I know there’s one in Seattle. Perhaps you can ask your Dr for a referral. I’m from Vancouver, Canada, here you need a referral you can’t just phone and make an appointment – don’t know if it’s different for you.
You are very young lola — way too young for nothing to be done.
Hang in there and I’m sure others will have lots of info for you.

Take care,
Donna

[Lolam]

Thanks for replying. I don’t know what I would do without my breast cancer forum. They help me so much. I am so glad I have found this forum. Ofter the onc. listens to what I find on the forums. I like the idea of seeing what other onc. are doing. That helps so much. I will see if I can find information on the center in Seattle. I will ask my onc. on Wed. I do not know as yet my staging, etc. I hope my onc. will give me this infor. He is very stingy with infor. Always has been.
Hugs, Lola

[B. Greene]

Welcome to the forum, a wonderful group who will help in any way they can. I too was stunned by the age business. You are fortunate to be near Fred Hutchinson who surely can provide you with info for your particular case. I’m sure those who have secondary MDS will respond. The first thing is to be sure you have a doctor who is familiar with treating MDS. Hugs right back. Barbra

[geebeebee]

Hi Lola,

I’m sorry to hear about your diagnosis. My Mom also was diagnosed with secondary MDS from breast cancer treatments five years ago. Hers was an aggressive form (can’t remember which) that was treated with pretty heavy chemo.

Maybe your doctor should talk to my Mom’s, in that my Mom, at 65, received a stem-cell transplant in November. It has been a rough road, to be sure, but she is now 100 days post-transplant, and doing pretty well, considering. She had a BMB today to see her progress, but her numbers have been very good.

The transplant my Mom had is called a “midi” by her doctors — here is a link to a process very similar to what my Mom had:

http://www.bloodjournal.org/cgi/content/abstract/104/6/1616

Don’t hesitate to ask should any questions come up. There are very knowledgeable and friendly people here to help.

Take care,

Greg

[shirlsgirl]

Hi Lola,

I’m so sorry to hear about your diagnosis. You’ve been through so much already, it must have been quite a blow. This is a fabulous forum, and I’m sure you’ll find much information and support.

I can relate to your comment on your doctor being stingy with information. My mom is now seeing 2 hemo. doc’s. …the youngest doc. is very informative and very patient, he explains things and answers all questions. The second doc. is older, probably more experienced but her visits with him have been very brief and her questions are quickly and vaguely answered.

Please don’t lose hope! Just look at Greg’s mom

Take care, Jody

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