hydroxyurea

[kristyk]

Hello all

I was wondering if anyone has had experience with this drug. My mom had her visit yesterday with the dr at the center of E, still waiting to start study drug. Anyway, her wbc remains high, 51,000 so he has put her on hydroxyurea 500mg bid. Her blast count was 21(blood) which is up from 11 in June. Other counts not great but fair. He says in general she is doing quite well. Wants to see her in 8 weeks…says she keeps creeping closer towards the AML and she is getting closer to treatment. So I suspect that come September we will be starting something. In the meantime he wants her on the hydroxyurea to be monitored by her regular oncologist. He said what he is looking for ( to start treatment) is less time in between transfusions. she had one last week, she had gone 3 months. So thats the update.
I have researched the hydroxyurea, but was wondering if anyone had some real experience t share. thanks to all.

Kristy

[Terri]

Bob was put on it when first dx in 2003 trying to reduce the size of his spleen. But when his whites started increasing they took him off. His spleen size did go down but not sure if it really did anything with the blast and wbc
Sorry I am not much more of a help. He was started on the Vidaza on a compassionate basis before it was approved 3 months after diagnosis

[Ensnee]

Kristy, Hans was put on Hydroxyurea in June 2004 when he was diagnosed. It took some tinkering to get the dose right. We saw his hematologist every week for a while, then every two weeks, then every month. He responded well to the drug and by the end of August his counts were under control. I think he was on 2 pills (500 mg/day) for several months. The longest he went between appts was 6 weeks, after Xmas. Then his white count started shooting up at end of January. The Hydrea was increased to 1000mg/day and 1500 mg every 3rd day, to no avail. It was apparent after about 3 weeks that he was transforming to AML, and he went up to 4 pills/day while we waited to see a transplant specialist. The white cells were shooting up. When he got into Princess Margaret Hospital in Toronto, he was DX as 95% acute, and while we waited for a bed for him to start chemo, they put him on 12 pills/day, plus
a drug to protect his kidneys from the flood of killed-off cells entering his bloodstream.

The hematologist told us from the beginning that the CMML had no prognosis, that it was entirely unpredictable, that Hans might go years on the Hydrea and be under control, or he could turn acute for no reason. He also told us that CMML was incurable, although if needed in the future, that a stem cell transplant was the only treatment, and that it would only be done to extend life, not to try and cure the CMML. Well, it seems that we should have been planning ahead of time for the possibility of a transplant. The doctor did try to refer us to another hospital which does transplants, in Hamilton, Ontario. They refused to see Hans on the grounds that they don’t do transplants on CMML patients. When we asked to be sent to Princess Margaret instead, they were gung ho on aggressive treatment. While they don’t say a transplant is necessarily a cure, that IS the goal. Luckily Hans’ brother is a tissue match. He has to get into remission first. This has been rather long-winded, and I don’t know what your mother’s DX is, but my point is, I wouldn’t just go along hoping that the Hydrea keeps her disease under control. It helped Hans for a while, with no side effects. But I think we should have been referred to other specialists from the beginning to explore other options. We were lucky to get into PMH when we did, because Hans became very ill quite suddenly.

If you have any other questions, please don’t hesitate to ask!

hugs,
Esme

[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

[PAG2005]

Kristy,

My mom was diagnosed with AML. The only symptom she had was some redness on her foot and it started to move up her leg. She was feeling tired but we thought it was because she was upset about my dad being in the hospital. She finally went to the Dr. and her wbc was over 200,000 and the redness was celulitis. They believe she only had AML for a few weeks and her WBC was at 200,000. She was given hydrea to knock down wbc while they ran tests to make sure she could receive the induction treatment. Hydrea is a mild chemo and it brought down her wbc without bad side effects, while she waited for the next step. How often does your mom see your local oncologist? Since your mom is being monitored they will know when she starts to transform to AML. Did you say her Dr. wants more time between transfusions before treatment? Does she usually need blood transfusions? When AML comes out of the blue, the patient could come down with an an infection of some sort that doesn’t clear up because of the high WBC. They might experience fatigue or shortness of breath due to low hct or easy bruising due to low platelets. Has the Dr. given you much information about the decitibine trial? I’m sorry you and your mom have to go thru this. I pray for a cure for MDS and AML.. Pat

[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

[PAG2005]

Hi Kristy,

My mom is in remission and she’s feeling good. It’s good that your mom is getting blood work each week. If she is only getting 1 blood transfusion every three months, that seems pretty good. My mom had induction treatment and 1 consolidation treatment. She was getting ready for her 2nd consolidation when her counts started to drop and a bmb revealed she had relapsed. We were devastated. She immediately went thru induction treatment again and went into remission again. Usually after remission your counts go back up to close to normal levels. After the second induction her counts started to rise but then halted and started to go low again. (My mother’s experience has been very strange.) She developed some kind of low level MDS.. The Dr. didn’t think she had enough chemo to cause secondary mds but all her counts were very low. She needed occasional blood transfusion and platelet transfusion every two weeks. The Dr. said she could have some hidden leukemia cells that couldn’t be detected by the bmb or low level mds. I was very stressed out for a few months waiting to see what was next. It took a few months but her counts slowly recovered into levels that were okay. She finished her 2nd induction treatment June of 2004. My mom just finished the AML vaccine clinical trial at MD Anderson last month. They are hoping this will keep her in remission longer. Her platelet count did go higher after receiving the 3 vaccines. ( This vaccine is for MDS patients too ) I was going to mention this on the board but I was waiting for her next blood count to see if her platelet count remained the same. I hope you can follow all this. My mom was 72 when she went thru her first induction treatment. Maybe your Dr. thinks it’s best to try and knock down MDS/AML with one of the MDS drugs instead of going right to induction. Even with AML, everyone seems to be treated with different combinations of chemo. It can be very confusing. Let me know if you have any questions. Pat

[Kathryn]

Hey Kristy,

my dad was on Hydroyurea in the beginning… From what I can remember there were no real side effects for him. It didn’t seem to keep his counts stable for long though, so he was switched to Thalidomide. The doc. was waiting on a trial drug to become available so he was avoiding anything strong. The trial drug just became available this month… Maybe it is one that your mom’s doc. has mentioned.

Best wishes to you and your mom,

Kathryn

[Ensnee]

Kristy, when Hans was diagnosed with CMML he was quite ill with flu-like symptoms. For the previous year he had become increasingly fatigued, got sick with what seemed like the flu a few times, sinus infections, and then, in the 2 months before he was diagnosed he started bruising a LOT. The year before at a check-up he had slightly low platelets. He saw a hematologist, who did all kinds of tests and declared him fine, although he did have some mis-shapen red blood cells, which were thought to be a hereditary anomaly, but Hans worried because they had never been there before. He was right — it seemed to be the beginning of the CMML. At DX he had quite an enlarged spleen. The Hydrea worked VERY well for him at first, as I said before.

Hope things are going okay.
many hugs,
Esme

[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]

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

[Ensnee]

Kristy, your Mom’s symptoms were very different, weren’t they? I must say that when Hans went to our family doc at the time when his spleen was enlarged and he had the “flu” that the doc sent him for a blood test immediately, saying maybe he some sort of infection. Hans & I were baffled — why would he send him for a blood test and what kind of infection? Two days before Hans had gone to the urgent care centre because of how bad he felt and the pain in his left side, and it was the weekend. The doctor there just said he must have pulled a muscle….!Can you imagine if the family doc had said that? It makes me shudder to think of it.

I know the waiting you are going through right now is HELL.

many many hugs,
Esme

[PAG2005]

Kristy,

How’s your mom? Here is the web address for an article on the vaccine

http://www.cancerwise.org/february_2005/…full&color=red.

Here is the web address of the clinical trial.

It is in Phase II and more than 50 patients have participated in the clinical trial. Pat

http://www.cancer.gov/clinicaltrials/MDA-DM-97325

[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

[whitleywrites1]

Hello, I was wondering how your mom is doing. My grandmother was diagnosed with AML 3 weeks ago now. They stopped giving her hydroxyurea because they said it was taking her counts down too fast. As of now, there is not treatment being done for the AML, just trying to get her weaned of the ventilator and praying the antibiotics help her infections.

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