New Here–and seeking help or something…

[TheBirthofLove]

My mom was diagnosed in August, 2010 with myelodysplasia. She is almost 62. It comes as a result of chemotherapy and radiation that was used to treat her for bartholin gland cancer over the past several years. She had been in remission of the cancer for 3 years when this raised its ugly head. Her bloodwork came up funky and they did a bone marrow aspiration. They found 5% blasts, but she had a lot of deletions and abnormal chromosomes. Since one of the deletions was 5q, the oncologist decided to give revlimid a try. She was also on procrit. Her WBC is critically low, often below 3. Her platelets are 106 or lower. Her hemoglobin is usually around 9-10. She has not needed transfusions yet. A repeat blood marrow was just done a few weeks ago. Her blasts are now 9% and 16 out of 20 of the chromosomes that were karaotyped are abnormal or have deletions. The oncologist has decided to take her off of revlimid. He said that because she is not transfusion-dependent, he does not want to try vidaza or decitibine because the side effects of those drugs will significantly impact her quality of life. He has recommended that she get a consultation at the Moffitt cancer center in Tampa, Florida to discuss clinical trials. We’ve made the appointment. My mom has nobody in her life, but me. She has two other sons…one who is not particularly involved and the other one has autism, so this is beyond his comprehension. I am trying to support her through this and do what needs to be done. We made the appointment at Moffitt. I’ve done a lot of googling and from what I’ve read–due to her age, the fact that her MDS is a result of chemo/radiation, and the sheer amount of chromosmal abnormalities, her prognosis is not good. 6-18 months?! The oncologist is honest, but he has not yet given us a prognosis…I think he wants to keep my mom positive. She has been working full-time as a teacher, but will probably have to stop soon due to the risk of infection and the fact that it’s just getting harder for her to work. She has a lot of joint pain and a lot of fatigue. She also has type 2 diabetes and unfortunately, has never really taken good care of herself, so that is a contributing factor. I was wondering if there is anyone on here with similar experiences who can maybe direct us a bit. I don’t really even know where to start. I am very overwhelmed and I am having a difficult time with this. I have a 14 month old son who is the light of my life and honestly, he is what has been pulling me through. Ironically, though, the hardest part about my mom being sick is that I fear she won’t get to watch her grandson grow up. It breaks my heart. Any words of assistance or encouragement would be greatly appreciated. I feel very alone in this. Lots of love and healing energy to all of you and/or your loved ones.

Melissa

[lindajo]

Melissa, I know you want some sort of time line or prediction, but most good doctors won’t give you one. MDS is widely variable from one patient to another. It is possible no matter what treatment she does or doesn’t have that your Mom could do well for periods of time.

She might have to stop working in order to have quality of life. With a low white cell count a school is probably a high risk place to be. It will keep her exposed to one virus after anonther and make her more fatigued.

Whether she does or not should depend more on her desire to continue working and what she wants to do. She will be healthier if she feels like she has made her own decision and she is happy with it. Knowing what she wants to do may take her a little time. You can support her by listening to what she wants to do and supporting any decision she makes.

You are doing great already by seeking out this website. It will answer a lot of your techincal questions and give you support as a caregiver. Your doctor has steered her to a Center of Excellence for MDS. That is a great first step. You will get excellent care there and information that you both need to make decisions. Keep in touch we care. Lindajo

[Andy R]

Hi Melissa,

Great to see you on the forum.

One thing I can definitely say is you are not alone.

Confusion and feeling overwhelmed is only natural but others are out there to offer advice and support by relaying their experiences.

Just got diagnosed with MDS myself a week ago but everyone has been very supportive.

Don’t give up. Fight for every moment.

Andy

[Author]

Posts