[faith’s daughter]

Shari, I asked the same questions. Revlimed did initially bring my mom’s counts down and shortened the span between transfusions but it did finally kick in and she’s been transfusion free since May. The rbc and wbc didn’t respond as well as the platelets but I don’t think they’re suppossed to. when I looked around at similar posts it seemed the average wait for it to kick in was about 10 weeks. Just hang in there.

[faith’s daughter]

I must concur that this disease is unpredictable. My mom was diagnosed last Nov. 19 and is responding well to Revlimed. The doctor wasn’t sure it’d work for her because her bone marrow biopsy was inconclusive but he tried it anyway. I really don’t know any more now than I did then. I’m comfortable with blood draws now. She hasn’t needed a transfusion since May but I was getting comfortable with those too. She suffered a spinal cord injury this July but that’s a whole other ball of wax. As I see it we’ve just been put on a different rollercoaster ride within this rollercoaster ride known as MDS. If I could offer any advice, it’s just to be the best son you can be. I know it’s hard but do what you can to have MDS free days. Only let it into your life enough to treat it–don’t let it take over. Trust me I know it’s hard but it’s neccessary.

[faith’s daughter]

hey lizab–sound off. We know you’re mad at the disease and doctors and not us. To find your answers go into “my profile” at the top of the page and look under recent posts–that’s how I find mine when I forget where I was last. Good luck.

[faith’s daughter]

Dear Campbell,
Thankyou for sharing the music in your ears for I know that is the Spirit. There’s a song they play on FISH 95.9 (it’s a Christian station here in So. Cal but it’s also on the web) that says, “Don’t cry for me. I’m finally free to dance with the angels on streets made of gold. To listen to stories of saints new and old. To worship our Maker …” It’s a beautiful song but I swear the first 8 times I heard it I was always with my mom on the way to the doctor. I pray the spirit keeps singing to you.

[faith’s daughter]

Hopefully someone else can help explain side-effects. Mom just mentioned the other night that she’s not sleeping through the night anymore but not when that started. And she’s still fatiqued. You’re young though and that’ll make a big difference. My mom also has a heart condition. Juicing and other dietary changes seem to help. Check the site–Sandy and Jimbob are good for advice on diet.

[faith’s daughter]

Alex,
My mom’s 68 and she had to affirm she was past child-bearing age. Apparently you just have to hang in there until it kicks in. Mom takes hers at night because one of the side effects is fatique. Good luck. Oh and thanks for mentioning the aspirin–Mom may need it for a leaky mitral valve and at least I know it’s okay with Rev. Of course I check everything with her specialist and the pharmacist.

[faith’s daughter]

Hello Beth,
Life never is what we expect, is it? I’m a caregiver to my mother who’s in your age group. I too have a chronic illness. I was having some new symptoms and my husband insisted I keep my doctor appointment. My doictor recommended yoga and to avoid stress. 2 hours later we got Mom’s diagnosis and because her house was being remodeled she came to live with me and my family. So much for avoiding stress!
Welcome, take a deep breath and hold on. Don’t worry about learning all our names–just know that we’re all on an incredible journey together.

[faith’s daughter]

Well the Revlimed finally started kicking in. On April 2 her platelet count doubled to 16 and then on the 9th it doubled again to 32. It was at 54 on the 16th so not quite double but I’ll take it. Her white and hemoglobin counts aren’t responding as dramatically but they are responding. I’m glad it kicked in. The doc was going to up the dose to morning and night and I was concerned about side effects. She started sleeping through the night when she got on it and I didn’t want her to be too tired during the day too.

[faith’s daughter]

Jan,
I’m thankful it was peaceful because that is what we all hoped and prayed for. May you too receive the blessing of peace that passes understanding at this time.

[faith’s daughter]

This disease is a rollercoaster ride and there are times I seriously want to find the “chicken exit” because it’s so hard to face. I am so sorry Jan that you are losing your mother–I am too. I believe your mom is right–you will be okay. Part of her will always be with you. Be assured that my prayers are with you.

[faith’s daughter]

Dear Patti,
I feel so alone until I come here. May God bless you and your mother as you continue this journey.

[faith’s daughter]

Mom had her first transfusion in the hospital and then 8 weeks later was her second. 4 weeks after that they started Revlimed and she needed to be transfused the following week. Then she went 3 weeks before next transfusion. The doctor wants to transfuse tomorrow (2 and 1/2 weeks since last) and still ordered a refill of the Revlimed. I see that a couple of you had counts come back to normal after 10 weeks. I know I should trust the doctor but going 8 then 5 then 3 and now 2 &1/2 weeks between transfusions has me concerned. She’s only been on it since 2/26 so if they transfuse tomorrow it’d be second one since starting. As you know transfusion day can tough. Do we just keep on keeping on and give it more time. I did talk to the pharmacist and he’d holding off sending the refill until I can find out if the doc wants to adjust the dosage.

[faith’s daughter]

My mother was diagnosed November 22, 2006. She had a transfusion when she entered the hospital Nov. 15 and had a bone marrow biopsy Nov. 17. As soon as the new oncologist/hematologist saw her records (delayed by her primary) he wanted to see her immediately. He was surprised to find out she’s had no treatment in the last 2 months and looks and feels fine. Her blasts are good–in the 5-7% range. I was relieved to find out that her blast level is good and that MDS is not called pre-lukemia anymore. Will have another biopsy to get more definate diagnosis and course of treatment. The doctor did say there are visual symptoms to look for but I’m not sure I caught all the info. Mom is blind so it’s up to me to monitor any changes. We’re on the high part of the ride right now.

[faith’s daughter]

Dearest Sarah,
I know it’s been almost a year since your post but I sent up a prayer. I lost my father almost 25 years ago and I know the holidays can be rough. There is peace in knowing Dad is well and whole again up in Heaven. I’m wandering through this site finding lots of comfort and support since my mom’s recent diagnosis (Nov. 22, ’06). I don’t know what the future holds but I know Who holds the future. I’m faith’s daughter but that’s not Mom’s name, it’s her strength. And mine.

[faith’s daughter]

Thanks for pointing that out Jim. The hospital Mom was in usually uses UCI but in her case the slides were sent to City of Hope. I can at least take comfort in knowing the slides went to a top-notch place.

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