11 replies to this topic

[Dadscaretakerdaughter]

Hello everyone thank you for allowing me to post. I'm new to this please forgive my stupid questions. My dad was taken to the ER on Tuesday he is 72yrs old has copd and has stents in him. He was suppose to have triple bypass surgery 8 years ago sadly on the day in the hospital my 37 yr old brother was killed that day. Drs decided stents were best so he could attend the funeral. Almost 8 yrs later (stents still in didnt go through the triple bypass). My dads been losing color and looked a grayish color shortness of breath lost  80lbs in a year and has severe left pain in his leg and arm. After rushing him to the ER we thought he was having a heart attack. We were SHOCKED to learn the he has CML his red blood cells were 7 and his white blood cells were 420. The hospital kept him for three days and he had 4 units of blood he was very dehydrated and has anemia and his spleen is enlarged. The hospital gave him a lot of IV s they had to stop because his kidneys were showing some signs of failing his legs and feet are so blown up they said he needed a break. His WBC are 280 and they released him from the hospital last week. His legs n feet are still so swollen and he just received Sprycel from Mail order. Hes been on it for 3 days ( took 5 days to arrive) his bowels are black and a lil runny is this normal? His dr is not very sympathetic and is probably about 26 yrs old and he is on vacation. We have to wait until next week until he returns from vacation to see him. My concern is my dads legs and feet are huge and look abnormal n haven't went down shortness of breath and now he's on this Sprycel  I am not sure what side effects to look for? Is Sprycel a good option to start with? Has anyone on here know if this is ok for a heart patient? Sorry for the long story and stupid questions I'm still in shock about this and I dont know anything about CML until reading this board. I dont know how to ask the right questions that's why I am here for some guidance and personal experiences. Any answers would be greatly appreciated thank you.

[Antilogical]

I am on a different TKI - Gleevec - but I had a terrible time with edema in my legs & feet when I started on it.  They were about double my normal size.  Ultimately, my family doctor adjusted the dosage of my blood pressure pills downward, and things are much improved.  (BP meds can cause edema, too, and the tki's can cause blood pressure to go down, so lowering the dose did the trick for me.)  Work with your dad's family doctor in addition to the oncologist.  They are a good complement to each other.

[Dadscaretakerdaughter]

Thank you for the quick response.  Seems like a simple solution hopefully that will work.  I will keep you posted

[Susan61]

Hi:  Your Dad has a lot of things going on there.  Sprycel causes edema, and having a black stool could be a indication of bleeding somewhere.  You do not sound too confident with this doctor.  If your Dad gets worse, I would take him back to the hospital, and let another Oncologist review what he is being treated with.  This doctor who is on vacation, I assume is the Oncologist and not his Primary doctor.  Nobody can advise you on here as far as how he should be treated, as we are not medical professionals. We are all patients with CML, and some of us have had it for a long time.

We can share how we are being treated etc.  Use your own discretion, and if you feel your Dad is not doing well then get him back to the hospital for further evaluation.  You said he has shortness of breath and filling up with fluid.  My personal opinion is that they should not have sent him home like this.  I would call his Primary Doctor to let him know what is going on.

   We are always here if you need any more support.

Susan

[Dadscaretakerdaughter]

Thank you Susan61.  I agree with you 100%!  My dad shouldn't have been discharged and this is a patient site and not a physicians site. It helps to get other opinions from patients on here to guide me in the right direction. I greatly appreciate it thank you.  The hospital he went to is a learning hospital but it's the closest one. My parents live out in suburban area where hospitals are further away. This is the closest hospital to them about 25 minutes away. I wanted to take my dad to another hospital and get a second opinion and drive the extra distance for my dad.... I feel like his life is in my hands and I'd travel anywhere for him. I'm a concerned daughter  and his biggest supporter. My dad doesn't want to go to another hospital or dr he doesn't want to travel any further than he has to. He also believes this is the best treatment for him. My family ( huge support team for my dad) agree with me something isn't right. We are new to this and this site is a stepping stone in the right direction. Now my next question would be does anyone have a any suggestions on how to talk my dad into getting a second opinion when he thinks he's ok?  We tried a family intervention but my dad got upset with us and left the room. I understand he's scared and nervous we all want what's best for him and do not want to force him. It's a delicate situation.

[chriskuo]

HE definitely needs to see a CML specialist.  What experience/ qualifications does his current DR have?

HE should see the best CML specialist in the area for starters.

[Susan61]

Hi:  I would not upset him, as you do not know what is going on in his head.  He probably has many horrible thoughts going in his mind right now with all the different ailments he has.  Tell him that if he gets the right care that he needs, that they can start working on him to get well faster.  Tell him if he does not go back to the hospital that the situation could get worse. Ask him to do it for his family if not for himself, because you all want him to enjoy his years ahead with all of you.  Tell him how you came onto the boards to see what CML is all about, and tell him you met people who have lived for a long time and will live for a long time because of all the great things they can do now for Leukemia that they could not do years ago.  He is 72, and he probably just thinks about the way medicine used to be.  Tell him CML is one of the most treatable forms of Leukemia.  People here Leukemia, and right away its OH MY GOSH!!!!  Give him some positive thoughts to encourage him to keep going, and he will want to search out better care.

    Teaching Hospitals can be great hospitals, but I think this doctor may  not be the right one.

    What State do you live in?  We are all from all over the country on here, and there is probably someone that can recommend a good doctor and hospital by you.  There might be a doctor that someone on here sees who they could refer you to.  Read some of the posts from others who talk about the different hospitals and doctors that are treating them.

    I live in New Jersey, and there are some great hospitals that specialize in the treatment of Leukemia etc.

    I know how hard it is on the caregiver, and sometimes harder than what the patient is going through.

Susan

[Dadscaretakerdaughter]

Thank you Susan once again you are correct.  I was confused and new to all of this. After navigating this site I'm feeling better and gaining more knowledge.  I am learning so much on here. Today's  technology is different and advanced from years ago. Yes that was my dads thought at his age and all of his health issues. I am going to take your advice and we will see how it goes.  Thank you

[Dadscaretakerdaughter]

Thank you Chriskuo . That's my next step to find him the best CML specialist.  Any suggestions for Reading Pa?

[Badger]

Considering his fluid retention, I would have thought that Tasigna would have been a better choice to start with. Pleural effusion is a possible side effect of Sprycel, and edema a side effect of Gleevec. Don't be afraid to question the oncologist. I am my onc's first cml patient and have been educating him since day one (with help from forums and websites like this one). If your father's onc is young, chances are he hasn't had much experience with cml.

[CallMeLucky]

Given your location your best bet is probably University of PA.  Abramson Cancer Center has a CML program.  I think this is only about an hour away from where you are.  The researchers who first discovered the Philadelphia Chromosome were from UPenn, not that it matters much, but they do have a strong Leukemia program with CML specialists

Another option would be Fox Chase Cancer Center in Philadelphia.

You could always go to NYC to Memorial Sloan Kettering, but given the options you have closer, I would just go to UPenn.

Your dad should definitely get another opinion.  Many people have a local oncologist and a specialist who see they see less frequently.

[Girla]

WHERE are you?