Welcome Pharmgirl,

Of course it is OK to join in the exchanges we are all having. Where do you live, how old is Mum, at what stage is she, how long has she had MDS, what is happening, please fill us in with as much detail as possible. We do not bite!!!

We welcome you, Pharmgirl, and hope that we can at least offer emotional support. I suspect that you will have many things to teach us. To add to Chris's note, be sure to let us know what category your mother is in.

Thank you Chris and Birdmom. I live in TN. My mother is 63 and is a breast cancer survior. She was diagnosed with Myelofibrosis about four years ago. At first she didn't have any symptoms except fatigue. In Feb '08, her Oncologist did a bone marrow aspiration and discovered she also had MDS. Her transfusions were monthly at first but since last fall, she has been having to get platelet and red cell transfusions on a weekly basis. Her liver and spleen are enlarged and she has petechiae all over. She has nosebleeds that have lasted for days on and off. She is in the last stage of MDS. She is not a candidate for bone marrow transplant because the Myelofibrosis has scarred her bone marrow and if new stem cells were introduced, there is no properly functioning marrow to work with. She decided a year ago that she would not want chemotherapy. She just wants to continue maintaining her quality of life with transfusions only. This is unfortunate because she has had so many transfusions that they are failing at this point. She has reactions to plates and red blood every time. Today I took her to the lab for her CBC. Her platelet count was 4.5 and her HCT was 17.2. Even her WBC is at an all time low of 2.8. The antibodies and antigens that she has built up over the past year has made it so difficult to match her blood type. This will become more and more challenging. I am grateful to have time to care for my Mom everyday.

Pharmgirl, I too would think twice about chemo considering your mom's stage of life. What does her oncologist say? Perhaps it would only make her suffer more for no real benefit.

Is your mother able to enjoy the parts of life that don't involve trips to get transfusions?

I'd have to look back in my dad's records (I have them all from the VA, about 2" thick!), but I think he also had myelofibrosis. I remember standing at the doorway looking at him lying in bed in the triage room, and the Dr pointing out his greatly enlarged spleen. I hadn't noticed until then; in fact, I barely knew where the spleen was located! Fortunately, he was in no pain.

Dear Birdmom,
Her Dr. said that she could try chemo but my mother said it would take away everything that she had left going for her. He really couldn't argue with that but he did say, "Well you never know, it might make you feel better". The other reason is that while chemo can cause remission, for her it would probably be only a matter of months before it all came back. She does have good days though...we wait patiently for those! It's amazing, on a good day she doesn't even look sick at all. My cousin and I arranged a small family reunion last Thanksgiving just for her. On her not so great days, I go over and help her with whatever she might need. We do have fun when she has an energetic day, we go to little fancy lunches, shop, or some days we just watch the home shopping network and order jewelry. ha ha!
She isn't in physical pain but she recently told me she was tired of suffering. I think she was referring to emotional suffering and probably the sleepless nights that end up leaving her even more exhaused. She is a very different patient because she has 2 diseases working together. You are right though, it has brought us closer together. I appreciate her and how she has always been there for me. I told her that this is just my time to be there for her and give something back. I am her only child. I also wanted to be her caregiver because I thought it might ease her mind when it is her "time to go" if I show her that she has raised a strong and independent daughter.

You are so nice to think of me, I will be thinking of you too! Take good care of yourself today.

Pharmgirl,

The USA and the UK are different. LOng may it be. However here they do not offer chemo because it can do more harm than good, I am told.

She seems young to me, but there are others even younger. Fortuneately MDS does not hurt. I reckon the worst aspect are the b.....y injections, transfusions and other needle led medical atrocities.!!

Pharmgirl,

The USA and the UK are different. LOng may it be. However here they do not offer chemo because it can do more harm than good, I am told.

She seems young to me, but there are others even younger. Fortuneately MDS does not hurt. I reckon the worst aspect are the b.....y injections, transfusions and other needle led medical atrocities.!!

Pharmgirl,

The USA and the UK are different. LOng may it be. However here they do not offer chemo because it can do more harm than good, I am told.

She seems young to me, but there are others even younger. Fortuneately MDS does not hurt. I reckon the worst aspect are the b.....y injections, transfusions and other needle led medical atrocities.!!

Chris, you are so right about the needles. They have to use a 20 gauge needle for her I.V. transfusions. Her Dr. finally had to approve I.V.'s to be put in the arm on the side that she had her lumpectomy because the veins in her other arm have been worked over way too much. You aren't even supposed to have a blood pressure cuff on the side that you've had cancer removed from! Still, my mother does not love the idea of getting a port a cath to avoid the sticks altogether.

I was curious about the fact that they don't offer chemo in the UK for MDS. I wonder if her Oncologist was suggesting chemo for the Myelofibrosis and not the MDS.

Hi Pharmgirl,

You are an angel and your mom is a very lucky woman to have you to help her at this time in her life. My heart goes out to you, it must not be easy seeing your mom in this condition. Continue being the brave daughter for your mom when you can. Do you have a family of your own?

I read that chemo can deplete the white cells in your marrow. It might be a quick fix but not sure how it will effect her in the long run...she really has a lot going on.

My thoughts and prayers are with you and your family.

I do not really understand the why's and wherefore of Chemo or no chemo, but i THINK (NOT SURE) THAT IT HAS NOT PROVEN TO BE USEFUL, AND IN MANY CASES HAS BEEN COUNTER PRODUCTIVE. i WILL TRY AND ASK NEXT WEEK.

Thank you Jeni for your reply, She does have a lot going on. I don't want to scare anyone here with all of her symptoms and course of treatment because her MDS is complicated by Myelofibrosis. She has had M.Fibrosis for the past 4 years and MDS for a year and a half. Both of these disorders are thought to be caused by the type of chemotherapy that was used in addition to radiation therapy after she had surgery for breast cancer. I think everyone here with MDS will have a good chance of surpassing the average survival rates since you are all educating yourselves and researching new treatment options.

Chris,
I will be with my mother while she visits her Oncologist tomorrow morning. I will ask a few questions too. There are two new meds I have heard of as recently as two weeks ago that are not chemotherapy but have been proven to help transfusion dependent patients go from weekly transfusions to one transfusion per month. These meds have passes all clinical trials so hopefully they are widely available. I will get information and let you know just case you haven't been offered these treatment options yet.

Good luck, hope you remember aLL YOU WANT TO ASK, NEVER DO, as I tend to forget unless I have it all written down......Oh the pains of old age.

Look forward to hearing.

Hi Pharmgirl,
I am so sorry to hear of your mother's illnesses. My oncologist told me that there are two known causes of MDS - exposure to toxic chemicals (most of which are industrial solvents) and radiation, including radiation for previous cancers. Please do let us know what medicines your mom's doctor recommends. I have been on an oral chemo, Revlimid, for 5 years now and my blood counts are all back to normal. I have 5q- MDS, and Revlimid has best results with this type of MDS, involving chromosomal damage.
I hope that all goes well with your doctor's visit today, and that you get good information that will help you with your choices.
Best of luck,
Anne