12 replies to this topic

[jjubin]

My daughter is now 16 and since she has had CML is appears once in a while she will be dizzy in the morning or sometimes out of no where have chest pains in the diaphragm area and upper chest.  She also gets a headache with this. Sometimes her right hand is tingly. Normally it eventually goes away in about 3-4 hours or she takes a nap and is better after.  This week the same thing occurred at 6:30pm at night, but lasted into the next day.  Oncologist had her go into emergency as they have been keeping track of her with taking Gleevec because there are not that many kids on it and the long-term effects  are not known.  Everything checked out ok again, but I have been noticing when she has these occurrences, her blood pressure is really low (90/80 over 50's).

Past history when she use to work out with a trainer he had noticed that when she exercised it seems her stats got lower instead of higher and her standing vs. laying blood pressure was pretty significant--this was just before being diagnosed with CML.

Has anyone every had anything like this occur?  They have been monitoring her heart with scans and EKGs and such every so many months?  Any info would be great.  Thanks.

[Trey]

One potential issue is that blood pressure can vary by "thickness or thinness" of the blood.  Before being diagnosed she had blood pressure variations, likely because of the blood being somewhat "thicker" due to the increased numbers of cells in the blood.  So the pressure would not equalize as quickly from laying down to standing up.  Now her blood may be too thin (anemic).  What are her blood counts?  Maybe a bit low?  If so, there can be dizziness from the thinner blood since it does not carry as much oxygen.  Overall, although based on the very little info you provided, it is not as likely to be a heart issue as an oxygen issue.  Thin blood means less oxygen.  Resting does not compete with other tissues for the scarce oxygen, so it improves the situation.  Overall your daughter is likely doing well, and probably not having serious problems if the docs checked her out and found no heart issues. 

You may ask the doc about increased iron, but that is certainly not a cure-all.  What is her dosage?  If not already doing so, ask the Onc about splitting the dosage and taking half morning and half evening.  Many of us split our Gleevec dosage and find that it helps.  Also, if she has responded well to Gleevec and FISH/PCR are good, maybe she should reduce dosage. 

There are other teens parents on here.  The teens seem to do better than adults.  Your daughter will very likely do very well over a very long time.

[Pin]

Hi jjubin, I get moments of low blood pressure and dizziness too (I'm 30 though). Unfortunately, every time I have it checked in a clinic it is not low (I'm sure it's because going to the hospital stresses me out!). Consequently I am having trouble pinpointing if there is anything there to worry about at all or if it is anything at all! I have had low ferratin levels so it might be related to this in some way (now taking iron supplements). It's great that they are monitoring her though just to be sure.

About the chest pain, what does the pain feel like and how long does it last? I have costocondritis, which causes nasty stabbing and aching pain in my ribs/sternum area that comes and goes as it pleases. Not sure if her pain is similar, to this but it might be worth ruling this out (it's easy treated with anti-inflammatories if it is this).

Hope your daughter is otherwise doing well on her treatment All the best, Pin xxx.

[jjubin]

Thanks for answering.  She describes the pain as if someone if sitting on her chest (lots of pressure).  Normally it resolves within a few hours or so or after lying down and getting some sleep.  Nikki also states she feels like she ran a marathon after.  So not sure.  Last blood counts were pretty good.  She always has to work on magnesium and one other thing (I'll have to look and see).  Otherwise yes she is doing well.  Thanks.

[Trey]

These drugs can cause fluid build-up in the chest cavity.  Sprycel more than Gleevec or Tasigna, but it is possible she could have fluid squeezing on her lungs and other internals.  Has she had a chest Xray? 

[pamsouth]

jjubin wrote:
My daughter is now 16 and since she has had CML is appears once in a while she will be dizzy in the morning or sometimes out of no where have chest pains in the diaphragm area and upper chest.  She also gets a headache with this. Sometimes her right hand is tingly. Normally it eventually goes away in about 3-4 hours or she takes a nap and is better after.  This week the same thing occurred at 6:30pm at night, but lasted into the next day.  Oncologist had her go into emergency as they have been keeping track of her with taking Gleevec because there are not that many kids on it and the long-term effects  are not known.  Everything checked out ok again, but I have been noticing when she has these occurrences, her blood pressure is really low (90/80 over 50's).
Past history when she use to work out with a trainer he had noticed that when she exercised it seems her stats got lower instead of higher and her standing vs. laying blood pressure was pretty significant--this was just before being diagnosed with CML.
Has anyone every had anything like this occur?  They have been monitoring her heart with scans and EKGs and such every so many months?  Any info would be great.  Thanks.

I was diagnosed in 2005 with CML at age 57.  I was first put on high doses of hydroxreua due to high platelets, and also waiting to see if I wanted to do a clinical trial of 400mg vs 800mg of GLeevec, which I declined.  I went on the Gleevec 400mg.  After being on hydrox for a few weeks, I went to the ER, because I felt like I had an elephant sitting on my chest.  I called the onc before I went to the ER and she assured me I was not having a heart attach but that my body was going thru drastic changes.  I went to the Er anyhow, I think they, the hospital, would liked to have kept me over night, as my heart rate was high, in flight.  However when the hospital ER doc, called my onc, she insisted they release me.

Yep had lots of chest pains and pains in the ribs.

I also might add before diagnoses I had went to a heart specialist as I was having mild pains in the upper left side.  They ran a lot of test, nuclear.  The Heart doctor decided by pains were from muscular skeleton problems.  I think at that time it was the CMl working on me.

PamSouth

[Lizzybee]

Has she ever been at or gone to the doctor during a time that she felt that way?  My dh describes his asthma attacks as a feeling that someone (or an elephant) is sitting on his chest.  My dd who has asthma has pain in her diaphragm area when she has an asthma attack.  With both of them, I can't hear the wheezing without a stethoscope unless it's really bad; so even if it doesn't sound like as asthma attack, it could be.  Also, as others have mentioned, the TKIs we take can cause fluid build up.  I think Sprycel is supposed to be the worst TKI for that.

[jjubin]

Yes.  That was also clear on the X-Ray.  They did do quite a workup on her.

[lrock]

When I had gallbladder issues all the doctors thought it was my heart. It hurt to breathe and screwed with my blood pressure. I was in my early 20's when I had it removed. Just a thought.

[pamsouth]

lrock wrote:
When I had gallbladder issues all the doctors thought it was my heart. It hurt to breathe and screwed with my blood pressure. I was in my early 20's when I had it removed. Just a thought.

Oh yes Irock, the gall bladder.  I kept have these attacks with fever and vomiting.  I happen to have an appointment with my primary doctor, when I had one of these attacks.  Doctor said,  Pam I think it is your gall bladder.  I had 3 different test and ended up having  my gall bladder out.  I did not have gall stones, but the gall bladder had quit working, something, about when the long tube from the gall bladder not opening up when it was suppose to, I forget exactly how it works. The surgeon did say the gall bladder looked perfectly normal when he took it out?

Anyhow wanted to say I was blaming everything on CML & Gleevec and it turned out to be gall bladder.  But then again sometimes I wonder why my gall bladder went bad.  I went on Gleevec around the first of Sept 2005 and had my gall bladder out May 2007, almost two years after starting on Gleevec, don't know, why it quit working.

PamSouht

[Megz]

Hi jjubin,

I'm not on Gleevec, I'm on tasigna. Your daughter is younger than me by a few years, I'm 22 but I've had similar issues not so much the chest pain, but I get sharp pain under my ribs on the front right side. my liver, pancreas, and gallbladder tests came back normal so they aren't sure, either. My blood pressure has been around 96/62 since I started treatment. They just tell me not to stand up quickly and no intense cardio (like I have the energy to go running haha) I agree with Irock and Pam S, and ask about possible gallbladder complications. These meds do a number on our bodies as you know.

Meg

[Lizzybee]

Meg,

How long have you been on Tasigna?  A known side effect of Tasigna is abdominal pain that usually occurs at about 4-6 months.  I had sharp pain that made me double over and wake up at night, and it lasted for about 3 weeks, I think.  I had an ultrasound to rule out pancreatitus or anything like that, but apparently it was just the Tasigna, because we never found anything else that could have caused it.

[Megz]

Hey Elizabeth and jjubin!

First can I say how awesome this discussion board website is. It's good to know im not alone so thanks everyone! I stared Tasigna October 3rd, 2011. That's so weird, that is what is happening to me, it's been about two months that ive had it, it started in late January, It hurts mostly when I'm sitting/ laying down, or have been on my feet all day. They did an ultrasound on me too and found nothing. Thanks for all of your input

So I saw my primary doc today and she said my blood pressure has dropped again now it's at 82/64 mm Hg. She had me walk around for a while and it finally got to 102/64mm Hg, but once i sat again it dropped worse than before. They told me to drink more fluids and to rest the next few days (no exercising). I hope this helps!

Meg