[kristyk]

Don
I am thinking of you. I’m so sorry to hear about Karen. Every time I look at my MDS bracelet that I wear to support evryone on this board, I see BRAVERY. That is Karen, and everyone. Sorry.

Kristy

[kristyk]

Pat
My Mom is doing pretty good. She has been on the hydroxyurea for about a week now. Only noted side effect is a sore spot in her mouth..thanks to this board I was able to tell her to march right down to her doc and request a rx mouth swish..she says it seems to be getting better. She thought sore was from an ill fitting lower partial…but it popped up the day after she started the med, so we errored on the side of caution. Her wbc did go down from 50,000 something to the mid 30’s after only two days on it. I will be anxious to see what her labs look like this week. She goes tomorrow. They are also adding a liver function test each week to her normal lab..
Thanks for the info on the vaccine…sounds very interesting. I think you should post about this on a new topic..sounds very very promising. Both of my moms siblings live in TX…perhaps we should make a visit and swing by MD Anderson while we are there! Again thanks for the info and the concern. Kristyk

[kristyk]

Esme and all,
It is interesting to hear from you all what was going on in the months/years leading up to diagnosis. My mom started having wicked headaches the winter of 2003, really bad. With much convincing, she finally went to a doctor, for the first time since I was born..1968! They ran extensive nuclear tests..cat scans..nothing BUT some anemia showed up. Then summer 2004 she was so stiff and hurt all over. Couldn’t lift her hands above her head. So, with much convincing she went back to this dr. Blood test revealed the anemia and a high sed rate. Dr said what she had was called polymyalgia rheumatica and put her on steriods. Everything was fine until Oct 2004, one day she got winded just walking a few steps. Back to dr..who just said it was the extra weight she was carrying around from steriod weight gain and gave her advair. Dr did not take blood and sent her off. Then Feb 2005 she went to the dr get referral to optomologist as required by her insurance. Luckily, I think, her regular dr was out on maternity leave and she saw a fill in dr..who by chance drew blood. The next day she was phoned to run, not walk to the oncologist. Long story short, I think this disease was begining in her with the headaches..and I feel certain that this family dr was probably missing something earlier on. At any rate..interesting. I hope family docs are becoming more aware of this disease and how to spot trends.

Kristy

[kristyk]

Pat
I am so encouraged to hear that your mother is doing well. And this vaccine? I would love to hear more about that, what do you know about it?

Kathryn
How are you holding up? I know these must be difficult days for you. And to hear that the drug that his dr was holding out for became available this month, oh dear. I so hope and pray for a cure for this disease. I feel that we will live to see it, I just hope our loved ones can..again, thinking of you.

Kristy

[kristyk]

Hi Pat
Thanks for reply. My mom sees her local oncologist weekly. Well, actually that is not exactly so, rather she is in his office weekly for labs. Her wbc started climbing around June. she has fluctuated between 24000 to 51000, up and down. During these past 6-8 weeks she had two indcidents of fever..no other symptoms really, which was treated with series of antibiotic. I guess she has been fairly healthy since her diagnosis in Feb. However she is quite tired all of the time, her hemoglobin hovers around 8 to 9, of course slowly goes down, they transfuse when she gets just at 8 or under and that has taken about 3 months this last go around. Her platelets have been low normal since diagnosis, not of concern thus far. Her rbc is lowish usually 3.27 or so. It is the wbc and blasts that raise the eyebrows everyweek. Both of her dr’s maintain that for all practical purposes, she is AML. Initially back in Feb they wanted to do the induction chemo process, but then held back based on BMB which was lower than they assumed it was. However that was in Feb, and the BMB blasts continue to increase each time she has one..from 8 initially in Feb, to 15 the last one in June. To qualify for decitibine clinical sudy, BMB blasts has to be at 20. They seem to really want to hold out for that. So that is where we stand. She seems pretty darn healthy other than the fatigue. And acutally the dr wants to see less time in between need for transfusions to start treatment..unless I guess she gets to that magic # 20 blasts in marrow. She might be there now, or getting close. I know that Dr did mention possibility of other treaments if for some reason the decitibine trial closes while she is waiting to qualify, specifically mentioned Revlimid, Vidaza. Well I am rambling now! So anyhow, as she is fairly healthy I am concerned that the hydrea might knock her other good counts down…what a dilema. But glad to hear it worked for your mom. How is your mom Pat?( I hold my breath, hope you have good news as I have not gotten everyone straight on this forum yet..hope your mother is not one we have lost) . Thanks for your concern and the good info. Kristy

[kristyk]

Thanks Terri and Esme for responding. I do appreciate any and all tid bits of info. Terri, I am glad to hear that Bob is doing well on the Vidaza, this gives me hope. Esme, I hope that Hans does well on this current round of chemo and can get to transplant soon. You mentioned that Hans became ill quite suddenly..may I ask what that looked like? In other words what happens when things start going down hill? Sounds silly and I know everyone is very different AND I’m not sure I want to know..but i need to know. As for my mother, she is transforming from MDS, just diagnosed Feb 2005. Still not sure what they have in store re treatment, decitibine? Vidaza? Revlimid? Induc/cons chemo? All we do know is transplant not an option for her. siblings not good matches. Do feel good that she is being treated at research facility and center of excellence.

Thanks guys
Kristy

[kristyk]

Dear Kathryn
I am thinking of you. Prayers and thoughts with you always.

Kristy

[kristyk]

dave
my good thoughts and prayers will be with you. good luck.

Kristy

[kristyk]

Dear Rene’
We don’t always tend to think rationally when we are blind sighted by a crisis! I do the same thing. I was in your shoes late Feb 2005. Take a deep breath. SOunds like your dad is good hands. Start preparing a list of questions to ask the doctor. Also, although some docs might hesitate some, i think it is certainly ok to ask them what they think might be going on. What were the other counts in your Dad’s blood work…wbc rbc, hemoglobin etc.. I am learning that tells quite a bit, if in fact your dad might have a blood disorder/bone marrow disorder of some sort. Best of luck and hang in there! Kristy

[kristyk]

GlowWorm
I saw your post on the other board. I dabble on both. There are quite a few people on this forum that have been using Vidaza and who have been quite informative. I’m sure you will get some good suggestions. Some other drugs in the loop right now..Revlimid, Decitibine, Zarnesta, Exjade. You might look into these as I believe they are lower toxicity treatments that are proving successful for MDS and AML pts, especially older patients. I am new to all of this and still getting informed myself. So all I can offer you and your dad is support and words of enouragement. I can tell you that in reading your dad’s history, you have given me some hope. 16 years ago diagnosed AML with lots of good remission time..that is inspiring without a doubt and a success story. I am so sorry that he is having trouble again, but it appears that treatments have advanced signifcantly since then, particularly with these new meds that are not so hard on the system. Trick is getting into a study. But Vidaza is approved and available. Keep up hope. I hope he regains his strength soon. Kristy

[kristyk]

Suzanne
You have the voice of reason. It is hard to wait but sound advise. My Mom has been healthy since time of diagnosis, symptoms free (other than tired) until last few weeks. She has had two episodes of fever in past 3 weeks. Now she thinks she might have bladder infection. As she was truly not sick a day in her like until this, I’m afraid this is the disease finally showing itself..I wonder, will this become normal ( frequent infections)? Kristy

[kristyk]

Kara
the particular decitibine study they have in mind for my mom is specifically for “older” AML patients. However, my mom continues to hover near AML but techniclly remains MDS ( bone marrow blasts have to be at 20, she was 18 one month ago) There is decitibine study for MDS at her center, but Dr seems to be holding out for the AML study..which means we are waiting for her to get worse!?! both the decitibine and Vidaza are similar low dose chemo meds. Decitibine apears to have lower toxicity than Vidaza. Appears that a small perecentage of people respond to the meds, but if they do, like your dad, a remission, even if temporary, is possible. I think they are hoped to stimulate healthy cell growth. We go back to study doc next week and will see if counts etc indicate doing another BMB to see if she qualifies for study. IF NOT, my hope is that they suggest something in the meantime. What is your Dad’s diagnosis? And yes, I am pleased that I live only a few hours away..and can be there every weekend and for doc apps. I am her main support. Even though you can’t be geographically close, sounds like you are tremendous support for you Mom and your Dad. Funny how things shift in a split second. I went from being the “kid” to the caregiver on 2-25-05…my head is still spinnng and I still have not got this thing figured out yet! Take care. Kristy And fyi..does your dad go to a cancer center in round rock? I went to Highschool in Austin. Have they considered going to MD Anderson for consult?

[kristyk]

Kara and Karelyn
My Mom is same game of wait. This has been the greatest source of frustration for me as daughter. You will find good info and support from the folks on this forum. My father was Vietnam Vet as well…and career army officer. Dad passed suddenly of hear attack at age 59 a few years ago. I always find kindred ties with other military folks, so give your Dad my sincere regards. My mom and I often wish our “old Bird” was here with us as she fights the fight of her life. Best to you all. Kristy

[kristyk]

Karen
My Mom is facing decitibine study. I have yet to have anyone respond on this forrum or on the AML forum who has actually taken decitibine. I can tell you how the study at my Mom’s center is constructed..like how it is dosed, how often BMB are scheduled.. etc. Let me know and I will be glad to share what I know. I can tell you that the Dr and nurses have mentioned that thus far, the side effects are very minimal in the patients currently enrolled . ( At my Mom’s center it is phase II study)However I do not know what success pt are experiencing. Let me know if you want more info on the study that has been proposed to us. Mom goes back on the 18th to see where we are at with her qualifying for the study. I will keep you posted if/when we start the drug. Please do the same for me if your Dad does…like you I am beside myself with wanting to know more about this. Kristy

[kristyk]

Carrie
My thoughts and prayers are with your Dad. I too am doing FMLA so I can be available to my Mom when she needs me. It has been great, although I am going through it fairly quickly. I have slowed down some, trying to conserve for when she becomes really ill, which she (thankfully) has not. I tend to panic and run to her ( about 2.5 hours away from me) whenever she has a small infection..I’m still trying to find my groove I guess, still scared and unsure about this strange disease. Luck to you and your Dad. Kristy

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