My wife was diagnosed with cml about 3 weeks ago. We came into the hospital in a huge panic and left a week later with some peace of mind. She was prescribed hygea and we were sent home. One week after leaving the hospital we were rushed back. She had very dangerously low platelets. She’s been in the hospital a week now and they’ve been transfusioning platelets into her body. For some reason her body keep killing them off. Doctors are going to give it a week to see if it gets better if not their thinking bone marrow transplants. Has anyone heard of this or can offer any advice. Thanks
You are here
Bone marrow transplant.
Hi Jason,
We need more information:
1. What is her diagnosis level? (FISH ; PCR ?) and blood counts?
2. What drug and dose did they prescribe?
Chances are she does not need a bone marrow transplant, just better drug / response management in the early stages.
It is vital that she have weekly CBC blood count check to verify her response - more often if necessary given her platelets history.
Can't comment any further without the above information.
So I’m not sure on her diagnosis level? She was prescribed 8000mg of hygea in the hospital. Once she was released they cut that down to 2000mg. A week after being released from the hospital she had her first CBC. The wbc dropped to 1,000. She stopped her hygea and was told to come back in a week. We did that and she was rushed to a hospital because her platelets where at a 7. Since then she has been given platelets about every other day for some reason her body is killing them off. The doctor wants to keep her for a couple weeks to see if she can get stable on her own. If that doesn’t work they’re thinking bone marrow transplant or remove the spleen. Is this a common thing?
Why has she been given hydrea instead of a TKI? I think you said earlier that her WBC at diagnosis was 300,000? I did a quick check on hydrea dosing and if I did the math correctly, an 8000mg dose would be recommended for someone weighing 266 kg. I'm not a medical provider but it seems she's been given way too much hydrea and it's harming her.
Here's a quote from someone I trust knows more about CML than I do: "Hydroxyurea is not a good starting drug for CML unless the WBC is over 300,000. The TKI drugs such as Gleevec should be used from the start. Otherwise the body can revolt and go into severe side effects as you are experiencing. Oncs need to get the message to avoid Hydroxyurea for CML patients."
Another quote from https://www.cancer.net/cancer-types/leukemia-chronic-myeloid-cml/types-t...
"Although hydroxyurea has few side effects, most patients newly diagnosed with chronic phase CML receive imatinib or another TKI as soon as possible. This means that they do not need hydroxyurea, or use it for only a short time."
From what you've told us so far, it's my opinion that she should not have been given hydrea. She should have been started at 400mg per day of imatinib.
Hey everyone. Thank you so much for the info on all this. Are dr did say he might have over shot the hydrea but wanted the wbc to drop. She originally had a wbc of 330,000. She only weight about 130lbs when she came in. So far this is the only site I’ve found that helps. I’m kind of a nervous reck. How long should it take for the body to start making and keeping its own platelets. We are on week 1.5 I believe.
Hi Jason, has her doctor discussed getting her started on a TKI therapy such as imatinib? As I understand it, hydrea is an indiscriminate chemotherapy that not only reduces the cancer cells but also destroys the good cells. Imatinib and the other TKI drugs are targeted therapies that are much less damaging to the good parts of the blood making system. Someone with more knowledge may be able to answer your question about platelet production. I suppose it depends on how badly damaged her blood system is from the leukemia and now the added insult of the hydrea.
Did her doctor say what phase her CML was in at diagnosis? The three phases are: Chronic (best prognosis), Accelerated (not as good) and Blast (worst prognosis). As Scuba said, she needs close monitoring until things start going the right direction. It sounds like she's getting pretty good monitoring if she's in the hospital.
I hope she starts rebounding soon.
Kirk
Hi Jason,
Can you also let us know which hospital your wife is attending. Because CML is quite a rare condition, many haematologists at General Hospitals don't see many cases. A lot of us on here have been in situations where we were more up to date than the doctors on some aspects of managing our conditions. I have a running gag with my consultant about sending him an invoice for me training his juniors. Your wife's case seems quite complex, and if she is not being seen in a group who deal with many CML patients, it may worth getting her referred to a centre of excellence.
She is at avera in Sioux Falls South Dakota. We got what seems to be good news this morning. Her platelets are at 31 witch is hard for us to believe because it’s been a lot of bad news. So that has us really excited. But that being said she still has to stay at the hospital to be monitored. Thank you everyone for the continued words of wisdom. Everyone in this group seems pretty knowledgeable about cml.
Hi Jason,
As Alastair said, you guys might want to consult with a doctor who has expertise with CML. Here's a link: http://www.nationalcmlsociety.org/living-cml/cml-specialists
It looks like these two doctors are closest to you.
Charles Schiffer, M.D.
Wayne State University
Karmanos Cancer Center
School of Medicine
Detroit, MI
Moshe Talpaz, M.D. - ADVISORY BOARD MEMBER
University of Michigan
U of M Comprehensive Cancer Center
Ann Arbor, MI
A major medical center and a level 1 Cancer Center is in Rochester Minnesota, The Mayo Clinic. Much closer than Michigan.
Minnesota is next to South Dakota. We also need to remember the nature of the medical insurance structure in the USA
I am a Mayo patient with CML. I am on Medicare which makes accessing facilities easier. Hope things work out. Gitel
Jason, I found this information today about Hydroxyurea:
The side effects of Hydroxyurea and their severity depend on how much of the drug is given. In other words, high doses may produce more severe side effects.
The following side effects are common (occurring in greater than 30%) for patients taking Hydroxyurea:
Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.
Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.
Onset: 24-48 hours
Nadir: 10 days
Recovery: within 7-10 days of stopping therapy (reversal of white blood count occurs rapidly, but the platelet count may take 7-10 days to recover).
Hello everyone. My wife was released from the hospital and was told she could go home. I just thought I’d post an update on are situation. She’s doing good. All her blood work results are coming back good. The wbc count has actually gone up since last time but she’s only be on gleevec for 3 days now so I’m assuming that’s normal. But all is good for today and we are loving every bite of it. I really enjoy reading all the forums on this page. The knowledge I’m getting on my wife’s diagnosis is invaluable. Thanks again everyone for all your input.
That's great news Jason! 
I'm glad you found this forum. That's why we hang out here, to help each other.
Hopefully the Gleevec will be kinder to her than the hydrea was. I didn't really notice any side effects at first, but after a while I started to get cramps in my feet sometimes. Encourage her to eat foods high in magnesium and potassium which can help with the cramps.
If I remember correctly, she should be getting blood tests at least once a week until the doc is sure Gleevec isn't causing anything to go haywire.
Hi Jason,
Thats great news about your wife, hopefully now she is at home and on Gleevec the results will just keep getting better. As a newbie CMLer myself and also on Imatinib (generic form of Gleevec) I can understand where she is coming from. I’m 3 months in from diagnosis and the TKI treatment has transformed how I’m feeling and my general outlook. It took a while to really kick in but once it did I have just felt better and better. I’d say I was really noticing the difference after about 4-6 weeks, although my blood work was showing improvements almost immediately. WBC down from 180 to 130 in 10 days, then 13 two weeks after that. Obviously with your wife’s platelet history and prescription of different drugs to start with, the results you may be looking for could be slightly different.
As for side affects, there were some especially to begin with such as nausea, leg pain and cramps. Now I only get the odd cramp in my foot which isn’t a big deal. I was informed most side affects decrease within a few months and that was true for me. Everyone is different and some people struggle more than others so do bear that in mind.
I’ve only recently just moved on to concentrating on the more in depth details of CML treatment such as PCR testing, as getting the blood work in order is the first goal, but once that is done your wife will likely feel much much better as I do now.
I thought this info might be of help and some comfort as I’m not too much further on with treatment from your wife, and using the same drugs. Keep battling on, and once you start to see that WBC count falling it gives you great hope that things are beginning to work. Good luck with it all.
David