79 replies to this topic

[PinkHat]

Hello and may God bless everyone here!

I initially posted this discussion into a wrong spot... I post again hoping for some insight thoughs from those of you who are more familiar with CML.

I  have been browsing the forum for a couple of days now, but as much as I  read, I really could not find any case similar to ours... I have not  read everything, so please be kind if you know that the topic has been  already discussed.

My  brother in law was diagnosed with CML just two weeks ago... he got a  lot of specific medication and he was supposed to be out of hospital and  on Gleevec, after one week. My sister went to take him home and she  noticed that he was talking weird and making no sense. She alerted the  doctors right away... the tomography showed he has 4 hematoma on his  brain, so he basically experienced a brain hemorrhage... The doctors  told us that if he makes it through 48 hours there are chances of  recovery. He, thank God, survived and he never went into a coma. Today  is a week since the brain hemorrhage happened and he seems to be  slightly better... he started speaking short sentences, he understands  all communications, but he has weird moments and a semi paralysis on his  right side... or so my sister tells me. The doctors said that this  paralysis is really strange as he can move his arm and leg, it is only  the eyelid that he cannot close properly....  I have not gotten to see  him yet because I live in the US and they live in Italy... but I will do  my best to take some vacation and go and help even for a short time. I  only have the information that my sister and my mom are giving me and I  correlate every info with my research on the Internet... this forum is a  great support for families like ours.

I  asked my sister to read what the diagnostic was and she said that it  was "CML blastic crisis". I don't know if that's the accurate diagnostic  or it was only the initial one. From the info she gives me it seems  like even if it was a blast crisis, the doctors did everything possible  to bring him back to the  chronic phase... and then the hemorrhage  happened and it became a more ardent problem than the CML itself. He  started Gleevec yesterday and had some tests done and today they  increase the dose and they will have some tests done as well. His  brother was tested to find out if he is a match. Hopefully he will be...

The next tomography is scheduled on Monday and he will also start phisiotherapy as soon as possible next week.

I  would like to ask if anyone heard of such complications... also I would  like to ask you if it is possible that a patient could be brought back  from blast crisis to chronic phase..

We are absolutely devastated  and I know that everyone here knows better than me how that feels. That  is why I would like to thank you in advance for taking time to read my  post. My sister just had their second baby and we were planning a family  reunion for his communion. They have a 3 and a half years old girl and a  3 months old baby boy. I pray every minute of my life that God will  give them their father back... they so much need him. Please help with  any info you might have and that could bring us more hopes...

...we did not lose hope as God is with him and may God be with all of you here...

[Trey]

From the little info you are able to provide, here are some thoughts on the various issues you presented:

1) Brain hemorrhage issue:  When a person has advanced phase CML the blood becomes very thick with excess cells, including very high numbers of white blood cells and platelets.  These excess cells can cause internal clotting and stoppages in various locations, especially in smaller capillaries, which can then break and leak.  If this occurs in the brain, it could be a brain hemorrhage (blood leakage) or maybe a transient ishemic attack (blood stoppage).   When diagnosed with very high platelets, the patient's blood should be "thinned" with intravenous fluids right away.  I do not know what medications he was being given at the time of the brain issue, except he was not yet taking Gleevec (which would not be an issue anyway) but medications could have been a complicating issue.  Also, if he was given a drug such as hyroxyurea, the rapid cell death of enormous numbers of leukemic cells would cause a lot of "cellular debris" in the blood and possibly add to the problem, which is why a second drug called Allopurinol is usually prescribed at the same time.

If the brain issue was small enough the person has a good chance of recovering most functions.  You already see that he is doing much better, and things can often get better over time as the body establishes alternative circuits.

2) Blast Crisis diagnosis:  First, he will want to ensure this is an accurate diagnosis.  Mistakes can be made when diagnosing Blast Phase CML, and there is no agreement on the definitions.  Here is some basic info on the issue:

http://en.wikipedia....ia#Blast_crisis

Overall, he needs to be treated by a highly skilled CML specialist.  The average Oncologist is not equipped to deal with Blast Phase CML.  Also, he started Gleevec, but Gleevec is probably not strong enough for Blast Phase CML.  Sprycel would likely be a much better approach.  The treatment will likely be to see how well he does on the CML drugs, and at the same time start the process for doing a bone marrow transplant.  Blast Phase CML (if an accurate diagnosis) has advanced to where the TKI drug may not be able to keep the CML under control for the longer term, even though there could be short term improvement in his condition where he might appear to return to Chronic Phase.  But as mentioned, this is often short term, so a transplant is usually advisable.

http://community.lls.../message/101600

Some additional info if you want it:

http://community.lls...?view=documents

The brain issue plus the CML is a lot to deal with, especially if it is Blast Phase CML.  The bigger issue for the longer term will likely be the Blast Phase CML since he can probably overcome the effects of the brain issue.  It will be a long road to travel, but there is hope.  Please continue to keep us updated on his progress, since we can learn from the experiences of others.  We all hope he does well.

[PinkHat]

Dear Trey,

Thank you for your response, I honestly believed you were a doctor as I read some of your posts including those which links you provided me with. God bless you and your family, your name was added into my prayers.

I spoke again with my family in Italy and I was able to gather more info:

The medication he was given since he was taken into the hospital until the date when the brain hemorrhage was discovered (that means 4 days) was as follows: oncocarbide (not sure if this is hydroxyurea), zyloric (allopurinol), levoxacin, diflucan (fluconazole),  atenolol and then the doctors prescribed him Gleevec once he will get  home. He never got home because of the brain hemorrhage. I hope the names of those pills are telling something to you, I tried to put in parenthesis the name of the chemical itself as I imagine that the name of the pills might not be the same here and in Europe... I could not find all of them though.

He was agitated most of the time especially during nights and the second day after the stroke he could not speak except for an "yes" or a "no" when he was asked questions or just movements of his had. The good thing is that most of the time he seemed  to understand everything the person who is with him was asking. After a week now, he is able to say small sentences such as "I don't want/I want something", "I want to sleep", "I want to go to the bathroom" and small things... but he still has difficulties in recalling names or people. The four hematoma that he has on his brain (3 small ones and a larger one located closer to his cerebellum, or at least that was my understanding) seem to affect his ability to speak and to remember things... For example he was not able to remember what's his daughter's name (she is 3 years and a half old), but he was able to remember his son's name (who is only 6 months old... in fact the baby is only 3 months old as he was born when my sister was only 6 months along... so his real age is 3 months, only chronologically he is 6 months old... anyway, they struggled a lot for the last couple of months in order for their baby to survive and thank God he is good now... he is my little fighter and I pray that his dad is the same). So he seems to have more troubles with long term memory.

The neurologist who takes care of him said that a surgical intervention cannot be considered at this point and the best thing that could happen is that his body fights to draw back the blood in those hematoma. Hopefully this is going to be the case... we will know better tomorrow when the ct scan will be completed again.

Just a few hours ago, I found out that he is sleeping a lot better now and he is not that agitated.I was told that he ate something (very little indeed), but he ate and he told my mom (who is with him now) that he wants to sleep. I know that sleep is crucial for the brain to recover and I pray that his desire to sleep is because he is indeed really tired and not because of an unknown sort of a complication.

I also found out that even though the doctors prescribed him Gleevec, he was never on this pill as I initially thought. In fact, the pill that he was given yesterday and today as well, was Sprycel... So, Trey, you were absolutely right... your knowledge is fantastic indeed... I guess you should be a doctor.

Most probably tomorrow he will have another ct scan, so we will know what happened with his hematoma and what is next; I will keep you posted.

In the mean time, the doctors are testing his brother to find out if he is a match... we pray to God that he is... if not, he has 2 more sisters and they will be tested, too. Also, my brother's wife is pregnant and they will have their baby in December... I was thinking about their baby's blood cord if they will agree to donate... we did not bring this into discussion yet, because we don't know the results of the siblings' testing... One thing I was not really clear about was whether the blood cord is really suitable to everyone's need of a transplant. Also, my brother lives somewhere else in Europe and how would the cord be transported to where is needed? Please excuse my ignorance, it is just that I started reading about all these things only 2 weeks ago and my knowledge is really poor.

Another thing that I was not able to find was a ranking of top hospital for this specific need in Italy. My brother in law is currently in Molinette hospital in Turin (Torino) and from what I read it is a research and a transplant center and they also have a hematology section. I was wondering if there is a reliable ranking of top centers for transplant that can be found on the Internet... I researched for his oncologist's name, but I was not able to find anything... Any thoughts about all these things? Sorry if my message is so disorganized, but a lot of things are crossing my mind as I am writing. I would have never imagined such a support from someone I never met and I thank you for that... btw, I am from Chicago but I was born in Romania.

May God bless, help and protect you, my brother in law and our families.

[PinkHat]

Hi again!

I was able to find some ranking and it seems like the hospital is ranked 54th out of 97 hospitals listed in Italy... I was also able to find his doctor, I spelled the name wrong the first time I looked his name up; it seems like his doctor is also working on some clinical trials... I will research more...

[Trey]

Dr Morotti is associated with the University of Turin, and I see that he has written several research papers on CML.  So he appears to understand CML fairly well from the little data I have found.  There are others at the University who also understand how to treat CML, so he has access to good doctors there.

The drugs are: Oncocarbide is hydroxyurea and is used initially for about a week to lower the white blood cell count (should have stopped this by now, before starting Sprycel); zyloric is allopurinol to help eliminate the dead cells from the hydroxyurea; levoxacin is an antibiotic and diflucan (fluconazole) is an anti-fungal -- both of these are trying to prevent infection or fungus in the blood (although I do not know why they are being used in his case); atenolol is used to lower blood pressure (to relieve the brain pressure issues).  Hydroxyurea is sometimes used before starting Gleevec, Sprycel or Tasigna to get the white blood counts down quickly.

They will try to find a brother or sister match first.  Chances are 25% that a sibling will be a stem cell transplant match.  The cord blood does not need to match since the baby stem cells do not have matching issues, and also it takes cord blood from two births to provide enough stem cells.  But using cord blood could become an option if there is not a good match available.

http://www.stem-cell...ll-transplants/

[PinkHat]

Thank you for the encouraging message and article. Indeed that was my impression, too... that the doctors overthere are qualified and they do their best to save him. I did not know that Italy is one of the top ranked in Europe for BMT, that is great news. As you said, all the medication I listed was given to him during the first week before he was going to be released. What I know is that yesterday he got two pills of Sprycel at once, two times a day, so my guess is that they stopped the hydroxyurea. I guess the doctors stabilized him for now... he just have to recover from this brain issue in order to move forward. We pray to God that it will happen as quickly as possible.

I found out a few things about umbilical cord cell transplant and also read about two of them being needed as one might not be enough. We have a relative that saved the cord of her baby... I am also thinking to try to get pregnant myself. My mind is going too far... we will wait for the test of his siblings first. Everyone in the family will get tested if needed. I will keep you posted. I hope that Sprycel will have good results for him and God will give him the miracle he, his little kids, my sister and we all need...

Thank you, thank you, thank you.... I will keep posting.

[PinkHat]

Hi everyone!

Today it was hard, really hard and even if we received some good news, there is also a dark side....

We had the ct scan today. His hematoma started becoming smaller, which is really good, but the neurologist said that they might have permanet effects on him. I really don't know what he meant by that... I hope it is not memory or his ability to speak... maybe he reffered to the semi-paralysis... we just don't know. The fact is that when the brain hemorrhage first happend, the neurologist told my sister that he will recover 100% especially because that he is still young. Today my sister said that he was not that sure about the full recovery... or maybe it was just her being dissapointed and scarred by the fact that her husband did not recongnize her, nor did he know about his kids when she showed him the picture. I think she was really devastated by that and she was not able to fully perceive the doctor's message. The doctor also said that he is under sedatives, because as I told you, he could not relax at all... now he sleeps better during the night and even during the day and hopefully this will help him a lot. So I guess him being in a lethargy kind of state is not unusual when under medication for his brain issue. I simply don't know. I try to find explanations that would not scare us even more. Because this is what we all feel from time to time: fear, hope, dissapointment, confusion, and hope again and the belief that our prayers are listened to.

The good thing is that the hematomas are going back... he responded well to all the tasks that the neurologist asked him to perform in terms of body movement, he knew his name and date of birth, he was not able to specify though the current date (month and year). I have not researched anything about this as I was more into CML research, but I will start doing that. As I said in my previous posts, he was going to start physiotherapy, but the neurologist still wants to wait, which is going to be hard for him as he really does not want to stay in bed without being able to go to the bathroom by himself. That tells me he understands and realizes a lot of things around him... he told my mom some days ago that he wants to go to the bathroom... he is just not allowed yet.

Another good news is that he responds really well to Sprycel and the hematologist said that his leukemia is under control for now, so the main concern remains the recovery from the brain hemorrhage, that might take quite some time as we know.

I just hope that he will be back soon because as far as I know a BMT can be performed only on people who have good physical condition... he is really a very active person, he never suffered from any kind of disease.

We pray, pray, pray every day and night that God will make the mirracle he needs... deep in my heart I feel that it is going to happen... his little kids and my beautiful sister need him.

Any thoughs on the news I brought tonight? I need to see some lights at the end of the tunnel, but today I just had a bad day.

May God bless you all and my brother, too.

Olimpia

[Trey]

A stroke can certainly affect short term memory.  The longer term memory will often be fine, but short term can be confused, at least at first.  You will not know how permanent this is for many more months and possibly a year or more.  The family would help themselves and the patient by accepting that the short term memory loss will be a problem for at least a while.  After quite a few months or maybe a year, the family will know how much improvement will be made.  It is too soon to come to any conclusion about how much memory capability will be regained.  So it would be better to accept the current situation as it is, and hope for longer term healing.  The brain can often fix the memory issue, but the re-wiring process takes time.  This will not be a short recovery, but it could possibly be a significant recovery.  But only time will tell.

http://www.ninds.nih...strokerehab.htm

http://ehealthforum..../topic3281.html

http://www.medic8.co...les/stroke.html

[PinkHat]

Thank you, Trey. Thanks for supporting us... I will keep you updated.

[PinkHat]

Hello everyone!

Today I have some news...

The hematologist said that the leukemia is under control, which is great news, so most probably they brought him back into the chronic phase, thank God. Today my brother in law started the phyziotherapy... of course, small movements still in bed, but at least he was allowed to sitt instead of laying down all the time.

I was told that by next week, he will be transferred to another hospital that specializes in neurology in order to move on with his recovery. It is weird to me that the hospital where he is right now, which is pretty big, does not have a neurology section... anyway, the hematologist saw no reason to keep him because, as he said, the leukemia is under control and he needs to deal now with his other problem... the effects of the brain hemorrhage.

He is on Sprycel and I guess he will continue to take that every day. I would like to know if Sprycel can be taken for a long time with good results... what I mean by good results is maintaining the chronic phase for longer periods of time. I read that about Gleevec, not sure about how Sprycel works. If anyone can help us with some thoughts, experiences, please do so.

I will travel to see him in the beginning of September, I pray to God every minute that he will be much better by that time. I cannot wait to see them especially the kids... I have never met their baby boy. I know my brother has a long way to go, and we hope that our love, prayers and support will help him towards a good recovery.

God bless all of you here and my beloved brother, too!

Olimpia

[Susan61]

HI:  So glad you gave a update.  Sounds like your brother is doing very well, and having a sister like you beside him through all this is the best medicine he can have.  Hope you get to see him in Sept.  The weeks are just flying by, and Sept. is right around the corner.  CML is very treatable,and even with all his other problems he is bouncing back and fighting the disease.  This is great news.  Just keep praying, because thats probably why he is doing so well.

I will keep you and  your brother in my prayers also.  Someone will give you some information on The Sprycel.  I am on Gleevec.

Susan

[PinkHat]

Hi Susan,

God bless you for encouraging us. Everytime I pray, I try to remember all your names, guys... and I do remember them.

Yes, he is doing very well considering what he went through for the last 2 weeks. He is really my brother in law, but I love him as a brother.  Everyone in our family loves him to death, he is one of the kindest and most generous person I have ever met.

Indeed, weeks will fly and on September 2nd I will be with them... for two weeks only...that's my vacation... and I will spend it with them, just as we always do. I will also be their son's godmother as their plans of christening him in August cannot be kept any more, so my sister decided for September as we are going. I love these kids like they are mine and besides our desire that their father gets well, I could not ask for more than being with them.

Thank you,

Olimpia

[Susan61]

Oh Olimpia: This makes this all even more beautful with this additional information you just gave.  Go to celebrate everything with your family, as you will have plenty to rejoice over  I am having trouble with my computer,therefore, this is all I can say for now.  Keep us updated.

God Bless

Susan

[Trey]

Glad to hear things are going relatively well.

To answer your specific question, Sprycel works for the long term for most people.  But if he started in Blast Phase, that can be a different story.  Bringing him back from Blast Phase to what appears to be Chronic Phase can be an illusion if the CML has gained certain advantages, and so far, his improvement is from the Hydroxyurea, which is a form of chemotherapy, and not from Sprycel.  These Blast Phase advantages the CML develops are micro-mutations in the leukemic cells that are difficult to define and detect.  So he may appear to be returned to Chronic Phase when he may actually still be in Blast Phase.  The reason I tell you this is that for those who are definitely in Blast Phase at diagnosis (recall that above I suggested making very sure that the diagnosis was accurate), the drugs have a lower probability of working over the longer term due to these advantages that the leukemia can gain once Blast Phase has been entered. That is why most Hematologist-Oncologists will suggest a bone marrow transplant for anyone who is diagnosed in Blast Phase CML.

[PinkHat]

Thank you Trey,

I understand that he is not out of danger... I will try to find out what the final diagnostic is... sometimes I don't feel like asking my sister because I don't want to scare her in any way. On the other hand, if his hematologist does not seem concerned and he agreed that he can now be moved to some other hospital to deal with the brain hemorrhage issue, that gives us hopes... I am afraid to enjoy all the good news, but at the same time I thank our Lord for any piece of good news that I get. Any day he feels good is a good day for us, as well.

I read about the "storm" that takes place in the blast phase and I got so frightened that I stopped reading at some point... I read about some other uncontrollable mutations besides the Philadelphia chromosome and I pray that it's not the case. I simply don't know.

I am thinking now... if God helps us and his brother is a match, can you please tell me if a BMT is still possible considering his situation?

I have not read too much about BMT, but I am thinking that the physical condition has to be as good as possible to go through a transplant.

God bless you, Trey.

Olimpia

[PinkHat]

I thank you Susan and I promise to keep you guys updated.

God bless you.

[Trey]

Transplant is certainly still possible.  He will not need to hurry into it within the next couple months, but he should proceed with the matching process.  He needs to recover from the brain event first.

I wrote a short paper about transplant for leukemia:

http://community.lls.../message/101600

[PinkHat]

Hi everyone!

First of all, THANK YOU Trey for the BMT paper. I read that in the past when I received the first message from you but I read it again... I knew it's not easy, but when I think of how many things have to be in the right place and on the right time, I just get frightened... but I never lost my hope.

Second, I don't have lots of news, and as long as I don't have bad news, we are still fine. Just a quick update... My undestanding that he was going to be moved to another hospital was not correct. It was a misunderstanding... He will stay in the same hospital as long as needed, which I believe is good because it is a good hospital.

He started physiotherapy on Friday and the doctor said that as far as he could see, our brother will be able to gain some independence within 3 weeks. I don't really know what he meant by that, but I would so much like him to be able to move around just a little; It frustrates him the most that he cannot go to the bathroom by himself... anyway, they have their reasons to keep him stuck in his bed, I guess.

This Friday he was very good, he seemed to come back and talked more than he usually did, my sister was really able to spend some time talking to him.

We just pray, pray, pray that he will come back soon.

Yesterday he had fever twice,  which concerned me a little, but he got some medicine and the fever went away. Can anyone tell me if fever is "normal" and it is not another sign of things not going well?

I just want to thank you all for the support you showed us. You are always in my prayers... God bless you all.

Olimpia

[Susan61]

Hi Olmpia:  Sounds like your brother-in-law is in good hands at this hospital.  That means so much in his recovery.  Give it time.  This can be a slow process, and it did not happen overnight.  He is dealing with 2 different problems, and that is what makes it harder.  Once they get him stabilized with the brain issue he can go on to take the next step.  Just keep praying, and you have eveyone else here praying that he does well.  There is nothing  more you can do, just keep him thinking positive thoughts along with your sister.  Amazing how that will help all of you.

Keep us updated.

Take Care

Susan

[tranier]

My prayers are with your "brother," his family and YOU!  My son just spent one month at the Cleveland Clinic fighting blast crisis (www.caringbridge.org/visit/bjranier).  I saw your post in the SCT board but decided to reply here because BJ's was true blast crisis CML.  It presents like AML but is not and CANNOT be treated like AML (damn that Philadelphia chromosone).  Trey has so many factual points for your family to consider.  BJ is currently on Sprycel as we await his transplant in a couple of weeks -a MUD allogenic.  The SCT is his only choice...however I caution everyone that BJ's case is not the norm.  He was controlled  with Gleevec practically since diagnosis and last month he had a "second switch" which the Clinic has not seen in ten years which put him into Blast Crisis - pretty much literally in one week's time!  As God heals your brother now and allows his body to hopefully rest up, now is the time that perhaps you could get the second opinion for him.  I will tell you that as Trey stresses if truly BLAST CRISIS CML, the three centers we contacted (the Cleve Clinic supports seeking other opinions)all  stress how important it is for long-term survival rates to pursue the SCT.  The odds go down significantly if you enter SCT not restored to "chronic" phase but also if you have a second "Blast Crisis" and as the head of transplant said -" we don't even want to discuss the odds then"
- that said it all for us.  But as I pray for everyone on this board please hear Trey when he says be sure Blast Crisis is BLAST CRISIS - get a 2nd opinion to be sure that it is.  For us there was no doubt...but we made docs prove it!!!!!   Blessings - Tracy