79 replies to this topic

[Trey]

The TKI drugs can cause dysphagia (difficulty swallowing) due to swelling (edema) of tissues in the throat, but I have never heard of anyone not being allowed to eat because of it.  It seems to be an over-reaction by the doctors.  That is unfortunate, because he needs to feel somewhat "normal" now, and this will not help. It is possible that the doctors are using this as an excuse to "force feed" him.  Otherwise, it seems like something that if it were my family member, I would tell the doctors to remove it and that the family will accept the consequences.  This is because his mental state needs to be improved.  But the doctors rarely think about that issue.

The mouth fungus is likely because his neutrophil (a white blood cell) count is low.  There are neutrophils in the saliva, and they keep the mouth free of infection, etc.  When the neutrophil count is low, and someone is in the hospital, these infections can occur more easily.  Although not a major issue, it just adds to the patient's discomfort.

[PinkHat]

Hi Trey and thank you for your post.

Indeed feeding him through his nose seems  a little extreme, but I guess they want to force feed him. He is actually doing better, he started walking every day now, of course using that metal frame (that I never knew how it's called).  I feel too that they should do everything to make him feel "normal" especially that he is conscious most of the time now. All his memories seem to be back, he is asking about home, kids and his social life prior to "the disaster". As I told you in my previous post his neurological issues seem to go away and my feeling is that the doctors are trying to force a fast recovery for a bone marrow transplant. They said that's inevitable... I AM SO SCARRED... but I have to be strong and encourage them.

The mouth fungus is because of his white blood cell being low... again, you are perfectly right. We found that out today as he was taken to the hospital for tests and brought back to the rehab center. The results were good as far as I understood... I am still not clear about the bone marrow biopsy that was performed a while ago.

I honestly hope that the doctors will consider taking that tube out, so he can start feeding normally. I just received today the Scandi shakes I ordered (per mamawarrior's suggestion )... I think they look yummy and he should like those. I got supplies for more than a month... if he likes them, then we will send by mail every month.

My sister just told him again that the whole family is coming in the beginning of September and he told her that he wants to see all of us, including the kids, after the christening of their little one. So he really remembers what he was told after the stroke in regards to the rescheduled christening event. Up to his point he did not want to see the kids... probably because he remembers that his 3 years old daughter got scarred when she saw him with the mask he was wearing when taken into the hospital. I am sure he does not want the kids to suffer in any way... they've been through so much lately, as their mom wasn't really with them most of the time. Perhaps he wants to get stronger, so he can hold them or just walk with them...

Anyway, I will keep you posted...

God bless you! You are in my prayers every day...

Olimpia

[PinkHat]

Dear Billie,

I thank you for your encouraging message and I am sorry for your son. Both of you are in my prayers every day.

Indeed, a month ago, we started praying  for a miracle and all I can tell you is that the response we got was frightening indeed. God's response really brings tears of joy in someone's eyes and that sort of fear that we only feel when we realize His greatness...

My brother is getting better and today I was told that he is allowed to drink some kind of fruity taste shakes, even though the feeding tube is maintained. I asked my sister to inquire about the possibility of having him to the church service for his little son on September 3rd. If the doctors agree, then we will tell him and maybe that will motivate him even more. He seem to be very sensitive though... he cried a couple of times in the last two days. He has always been a very kind and passionate man, but I only saw him crying one time... when my sis was stuck in the hospital's bed, because any movement could have cause a premature birth, which eventually happened by the time she was only 6 months along early this year.

Anyway, he is doing well in terms of his neurological progress and we have no words to thank God enough for that. The future scares me as much as the past did, but I guess we have to remain strong and encourage him to fight. Just act with dignity and keep praying, if God is with him, nothing can stay against. He is so young and we all need him back, especially his beautiful little angels.

Just keep praying. Not sure if you are a christian, but if you are, never forget to implore Virgin Mary to ask her Son for mercy.  God Bless your son and your family!

Olimpia

[PinkHat]

Dear Billie,

Thanks for your message and God Bless you, your son and the entire family!

We were so happy today... he felt better and he laughed and smiled explaining to one of our relatives how the speaking teraphyst asked him to describe a normal day before he got into the hospital. Also he asked my sister about the kids and the christening ceremony. However he told her he would not like to go to church because some friends and neighbours are coming as well... he just does not want anyone else. except for family, to see him like that, extremely thin and in a wheelchair, with a tube going through his nose.  He even asked when we are coming and he was worried about my sister preparing the stuff for the christening event. His neurological recovery is good, I would say very good if we think that only a month ago he experienced one of the worst strokes someone can get... today I asked my sister to read some of his medical papers for me and that's how I found out the kind of hemorrhage he had. It is called intraparenchymal hemorrhage and it is one of the worst because it happens inside the brain tissue. Anyway, we have no words to thank God for his recovery. Most of those experiencing this would not even survive... his life was in such danger just a month ago. I still have chills on my spine thinking of that night... my poor sister and my mom, going through this at the hospital, having her kids home with some neighbours. Anyway, that nightmare is gone, and we know there is a long way ahead, but he has to fight every step of the way. We support and encourage him and my sister and we will help them with the kids as much as we can. We will continue to pray for the miracle he needs. I have to tell you that we prayed alot to Virgin Mary and we felt She listen to us. It is frightening to realize Her greatness, it made me humble and gave me the feeling that I did not know what the essence of life was until I came back to the true Faith... to belive that with God everything is possible, to believe that Her Son can do what human beings can not... just keep praying and so will I for you and your son and everyone I met here.

The feeding tube is still there, through his nose, but he told my sister today that even though he is not allowed, he still drank some water when he was thirsty.  He told my sister today that he remembers the day of his stroke (even though he did not recall it was a Friday, he believed it was a Saturday), but he remembered that day. He also remembered that he was going to leave the hospital by that time. My sister shortly explained him what happened, but he does not remember having sis and my mom with him 24/7 for more than 3 weeks after that day. I understand it is a common thing that the patients don't remember those days after the stroke, even though they recognize people who are with them at a certain time. Anyway, he seem to realize what he went through and he said something like: "I would have been home by this time if the stroke did not happen"... My sis is telling me that he is better every day, even though he had fever for the last couple of days. It does not last that long, but he still gets it. I understand it is common for people with this type of stroke, but I might be wrong.

My understanding was that the stroke actually did not happen the day was discovered, but a while ago...the neurologist was not able to tell when, but he was sure that the hemorrhage did not happen they day it was actually discovered.

My sister remembered that as they were heading home a weekend before his dx, all of the sudden her husband hit the breaks and asked her if it got dark outside... she found that really weird, but now that she thinks back she believes that was the moment of his stroke... that was a week before he was taken into the hospital. Moreover while in the hospital, before the moment when the stroke was discovered, he complained to my mom about having moments of blurred vision, but it seems like he never told that to the doctors.

Next week, by this time I will be with them and it will be a joy to hold my little angels, and to hold my family as well. I would for sure try to get the ricotta pie recipe for you, because I know that my sister's neighbour is an excellent cook. I hope she knows, if not, I will ask someone overthere...

I wish you the best and keep in touch.

God Bless you and your son!

Olimpia

[PinkHat]

God bless everyone!

Just thinking to post some of the details in regards to the medication he gets at the moment:

Sprycel - 2 pills x 70 mg a day

Antra

Bactrim

Kepra

Gardinale

That's what I found out today - as I researched them on the internet, I figured out what exactly they are... of course as much as I can figure it out.

Any toughts on the dosage of Sprycel? Does that tell anyting about where he stands? It might be a silly question, but I count on your kindess and understanding as I always rely on "second hand" info, so to speak. I never talked to a doctor, but I plan to when I go there.

Thank you in advance and God bless!

Olimpia

[PinkHat]

And one more thing that worries me, but it seems like the doctors are not worried... He gets fever every day... it goes away fast, but he still gets it.

[PinkHat]

More info about medication : today the dosage of Sprycel was decreased to 2 pills x 50 instead of 70.

God bless you.

Olimpia

[PinkHat]

Hello everyone!

I am in Italy for almost a week now. I was just too tired and overwhelmed to post any message.

Here's what happened since I have not posted any updates. My brother-in-law was removed from the rehab center as no progress was achieved over there after 2 weeks. He was taken back into Molinette Hospital on Saturday because he got fever every day and because he became too thin to perform any type of physiotherapy. I went to see him almost every day and I have to tell you that he is doing good... I really can see he looks much better since he has returned to the hospital. That rehab center was not a good decision and the doctors recognized that when I talked to them on Monday.

Anyway, the feeding tube was taken out and he is eating normally right now. He drank  the Scandi Shakes every day (THANK YOU MAMAWARRIOR!)... actually he asks for it because he likes it. Today the doctors stopped again any liquid and a few types of food due to his dysphagia. The explanation I got when asking why the tube was put through his nose in the first place, was because the speaking therapist considered it necessary. My understanding was that they gave him an ice cube on his tongue and he did not feel it was cold. The speaking therapist feared complications caused by dysphagia therefore made the decision to put this stupid tube though his nose and into the stomac. Obviously that was a bad decision because he lost tons of weight during the 2 weeks in the rehab center. Thank God he is back into the hospital, he feels safe over there and he is safer indeed. The hospital looks really good to me and the doctors were very, very nice to us.

I looked through tons of papers, but my Italian is just so poor... I am thinking to scan or copy them somehow.

Here's what I found out from my conversation with the doctors... I was lucky because his doctor called another doctor who knew English very well, but she was not as familiar with my brother's case. His doctor would understand me well, but his English was not great. Anyway, he was nice enough to call his colleague and let her know the answers to my questions.. At the time of diagnosis, his WBC was 400,000. All his medical papers that I looked through listed the diagnostic of CML in blast crisis, but the doctor actually told me he was somewhere in between.... I asked if he is talking about the accelerated phase and he said that's exactly what he meant. Now, why on Earth would they not say accelerated phase instead of blast crisis on his medical papers? It beats me... I don't know.

The doctor could not remember what was his basophil count and I did not insist to get this looked into. I think I can figure out myself, it is just that I don't know if there is any  "medical acronym" for this count. Two days ago, the mailman brough us a package with all his medical papers, so I can look through them and try to figure that out. I think there are more than 100 pages....everything, it is scarry.

He did have the normal Philadelphia chromosome and the doctor told me that his tests did not reveal any other mutations, but there is another bone marrow test that was performed as well as a new ct scan yesterday and we don't know the results yet.

I know that he had some tests done for his heart and lungs these days and they were fine, thank God.

I also asked how good of a match his brother is and the doctor told me he is a very good one, but he did not detail.

I need to ask again about his blast count, because I was not able to figure that out from the response they gave me... and they went on and on and I lost it, too .... I feel so stupid, but I will ask again.

The doctors are preparing him for a transplant, that's for sure, but we don't have any details yet.

I asked them about his response to Sprycel and they said he has a good hematologic and a cytologic response, that is the reason why they decreased the dosage of Sprycel from 140 to 100 mg daily.

Here's what I have now... I feel it's not much, but if you have any thoughts, please post it here.

I thank to all of you and may God bless you all... you guys here are a huge support to us and I thank you for that.

Talk to you soon,

Olimpia

[Trey]

To answer some of your questions:

Speech therapists are not doctors.  Tell her to stay out of the medical evaluations or you will put an ice cube in her posterior to see if it feels cold to her.  I doubt it.

Basophils are abbreviated BAS here in the U.S.

Normal Philadelphia Chromosome with no mutations is good.

The doctors "said he has a good hematologic and a cytologic response" -- please explain the cytologic response more.  What was the BMB or FISH result?

Try to find out the blast count at diagnosis.

You are helping and that is all anyone can do.  Hope goes well.

[Happycat]

Olimpia,

My continued good wishes to your brother and his family.   I'm glad to hear he has responded so well with Sprycel that they can lower his dose.  Also glad he is back in the hospital and out of rehab, since it definitely didn't sound like the right place for him.

I noticed the picture on your avatar of a woman and two kids.  Is that you?  It's a very nice picture.

Best wishes to you all,

Traci

[PinkHat]

Dear Trey,

Thank you for your answer.

First of all, you are just so right... the speech therapist should stay out of this...I would kick her butt in a sec if it would be my husband. Anyway, my sister is that scarred that she listenes to everyone; I don't want to push her to do anything, she is extremely scarred and she worries all the time.

I looked through those papers and I found the first result of the tests that were performed in the hospital where he first went  (the day when he got into the emergency room).

I will list the results below, the way they show up on these papers... Maybe they will make any sense to you because I was not able to figure anything out. But these are the results of his first blood exam:

Leukocytic formula: Neutrofili %: 24 (%) (40-75)

                              Linfociti %.  9 (%) (18-50)

                              Monociti  %: 4 (%) (5-13)

                              Eosinofili %: 1 (%) (1-7)

                              Basofili %: 2 (%) (0-2)

Hemogram:    Leucociti : 283.76 (10^3/mcL) (3.5-10)

                    Eritrociti: 2.54 (10^6/mcL) (4.3-5.7)

                     Emoglobina: 7.8 (g/dL) (13.5-17)

                    Ematocrito: 23.8 (%) (3-50)

                    MCV: 93.7 (fL) (80-97)

                    MCH: 30.7 (pg) 827-34)

                    MCHC: 32.8 (g/dL) (30-37)

                    Piastrine: 19 (10^3/mcL) (130-390) - these are platelets

                    RDW-CV: 16.8 (%) (12-15)

                    MPV: 9.9 (fL) (9-13)

I did not translate all these terms because I know they are very similar to English terms... To be honest, I don't even know how to spell all of them in English

Anyway, these are the results of the tests taken on July 6th in Martini Hospital before he was transferred to Molinette. Martini did not have a Hematology section, but that was the first hospital he went to the emergency more than 2 months ago. I will look up for the first blood results from Molinette, but I noticed their forms are different... I remember someone on the forum was discussing about those forms being different from a lab to another.

I will come back with the BMB... the kids really don't give us many breaks. I only get to look through these papers when they are asleep, like for example now... my sister went to visit her husband... it is quiet for an hour probably, so I will continue my "research"

I thank you with all my heart, you are in my prayers every day. God bless you.

Olimpia

[PinkHat]

Hi Traci and God bless you!

Thank you for your message and for the good thoughts you are sending to my brother. I saw him last night, he looked much better. We talked for almost an hour, I brought him some pictures of his kids... It is just so hard, but we have to fight... all of us.

Yes, the picture on the avatar was taken after the church ceremony on Saturday. It is me and the kids. I love them to death and I pray every day that God will give them their father back. The little one has the bluest eyes... just like his daddy.  He must fight for them and he will.

Thank you for your support... you are also in my prayers, just as all my friends here.

Best,

Olimpia

[SunNsand]

Speech therapists are also trained to evaluate swallowing and aspiration issues. Many people after strokes will aspirate while swallowing liquid then develop pneumonia. This is usually tested by a swallowing evaluation done under x-ray.

[Trey]

The blood counts are fairly standard for diagnosis, although they only tell a small part of the story.  WBC was 283K (average for diagnosis), he had low red blood count from the CML, platelets were very low (maybe from CML, but could be caused by initial stroke treatment?).  Basophils were normal, which is a good thing.  Neutrophils are very high which is what you would expect from CML.

So overall nothing much unusual for initial CML diagnosis.  The BMB report and other lab reports may show why the Onc thought the diagnosis was Blast or Accelerated Phase.

[PinkHat]

Hello everyone... all of you who supported us in the beginning of this ordeal deserve a the biggest apologies in the world for being left without any news for such a long period of time...

We have been through so many things and even though I did not post at all for that long, I kept praying for all of you. It is almost ironic that in one of my previous post I said that I will try to get pregnant in order to have the second umbilical cord if needed... and... surprise!!! no need to try... I did get pregnant.

I have been through a lot in order to keep this baby that we so much waited for (...history of failures...)... but I decided to not complain about my stuff... my brother suffers so much that the family decided not to complain about our issues any more. Anyway, I am fine now and if God keeps us healthy, we expect our first baby on July 4th, 2012.

Anyway, news that I know interest you the most. My brother...

As we left Italy, he was still in the hospital and doing much better in terms of recovery. The doctors continue to be amazed of his after stroke recovery. Except for the fact that sometimes he gets confused in regards to names of different things, no other significant effect that cannot be overcame in the future is noticeable. No paralysis, no memory loss, full recovery of speaking and writing skills, just moments of confusion shortly followed by a return to a normal state... The last CT scan result came out today, his brain is "clean", absolutely amazing, the neurologists are very pleased.

Now, the CML... this part really hurts... I guess I became much more sensitive lately... At some point after our departure he was released from the hospital and on Sprycel. The doctors warned us that a SCT is highly advisable, but at that moment he went home on medication. Everything seemed to go well... but God, I remember Trey's posts... if it is a real blast crisis, the return to an apparent state of chronic phase is not going to be for long and it might very well be due to the initial therapy rather than specific medication, in his case Sprycel.

Anyway, at some point.... maybe 4 weeks ago (honestly our notion of time changed a lot... we learned how to calculate time before and after this horrible diagnosis) he was scheduled for his regular doctor appointment and whoever saw him at the time of the visit told him Sprycel is not necessary any more. He asked again to make sure that's the case and he went almost a week without Sprycel. During this time, his situation became worse and he started having fever once in every 6-8 hours... they called the hospital, they said it was a mistake (God!!!) and put him back on Sprycel. BTW, Sprycel pills for a month is supplied by hospital in Italy b/c the regular price is something unheard of. Back home on Sprycel did not do any good... his situation became worse and worse and in a few days my sister took him to the emergency room.

He is in the hospital ever since and he currently undergoes the second round of chemo before transplant. He seems to take the chemo really well, except for the fact that for 2 days he keeps getting fever on regular basis and complaints from stomach aches but only from time to time.

Now a short digression - not sure if anyone remembers, the fever was the major problem, that gave a lot of headaches to his doctors... there are a few doctors seeing him at this point. They feared a type of infection that could endanger the transplant, but after literally tons of test, they came to the conclusion that the fever is an effect of leukemia itself and not due to an infection of any sort . What do you think about this?... Is anyone here who heard of such situation? Please help!!!

The transplant is scheduled next Wednesday (December 21st) and we pray for a miracle and implore God to give him life as a present for Christmas. The donor is his brother who seems to be a good match as the doctors did not consider necessary to test the other two siblings. I asked about the type of match and they seem to have a different way of saying than what I expected. What I could get from them was that his brother's type of blood cells match his by 88%. Does it make any sense to anyone?

The doctors told us that the transplant is his only chance, but today his hematologist told my sister something that sounds really weird to me. Don't take me wrong, I have the highest respect for these people doing everything possible for him, but sometimes, I don't understand they way they present the situation. My sister asked him what he thinks about her husband chances after the transplant and the doctor said that at this point he can only asses the patient's daily situation.. he cannot tell what tomorrow's going to bring us...

Today he again had fever twice, he got the medication to bring that down, but every time he gets fever he becomes really scared... his optimism decreases.

Some other things that I need to mention:

1. his platelets are really low, so he was basically never out of Thrombocytopenia thing... his nose bled a couple of times a week ago. They gave him a sort of transfusion to help his platelets count.

2. his blast seems to be still really, really high. My understanding was that it still is around 30%, which scares me to death... I read about this and I stopped because it made me loose faith.

3. he is constantly getting fever and the doctors said that's his highest risk factor. In my opinion they don't seem to know what is causing it, but I might be wrong.

4. there is no way back at this point, we have to move forward and pray every minute.

My message is disorganized, but I know you will make sense of it...

I keep praying for everyone... God Bless You All and I thank you again for your never ending help and support.

Olimpia

[Trey]

Olimpia,

It is nice to hear about your personal good news, that you are expecting a baby next year.

I think you have explained well the issues related to your brother-in-law.  The match sounds very good, so that is positive.  The fever and blast count are risk factors.  Since transplant is the only option now, there is no point focusing on the potential negative issues.  The positive point is that the transplant chemo will wipe out his entire blood system, including all blast cells.  The leukemia can cause fevers when it is accelerating, as it is in his case, so hopefully that is the cause.  If the doctors do all they can, then that is all anyone can expect.  Your sister should try to get him to eat well now and build up strength, because the transplant process will be difficult. 

Hope all goes well.

[Pin]

Olimpia, thank you for letting us know how you and your brother in law both are.   We are all thinking of you xxx.

[Tedsey]

I am also sending my best wishes.  Let there be only good health and good fortune this new year for you and your family.

Teds