8 replies to this topic

[Tedsey]

This afternoon, it looked like a blood vessel burst in my eye.  The upper half and right side is all bloody.  I don't know if this is the same as the eye bleeds mentioned before with Gleevec.  My eye is not dripping blood.  Anyway, I have also had my period for the last 30 days.  It is mostly irregular from light to heavy and in between.  I am not sure if the eye and the endless period are related.  I also have very low PLT.  They fluctuate around 20-30 thousand.  Just wondering if anyone has had the eye issue, the menstruation issue or both on Sprycel.  I have been on 100mg about 5 months.  Called the onc and awaiting her response.  Although I am not scheduled for a CBC for 1 month (curiously I graduated to the every 2 month plan), I will probably get one tomorrow.  It is a bit unnerving.  

[everonward]

Hi Tedsey

I can sympathise with the eye bleeds and it sounds like that is what you have - a subconjunctival hemorrhage. I'm on Glivec and get them - not frequently but enough for them to be a nuisance, alveit only visually. I woke up this morning to find a tiny one in my right eye, but have had them where over half of the white is blood red. Not sure if they are PLT connected. Mine were normal at 208 2 weeks ago.

I would possibly be more concerned about the menstral issues as that could sap your energy - it would certainly sap mine.

Hope you find an answer

marian

[hannibellemo]

Teds,

I experienced an eye bleed on Gleevec once, pretty gruesome! I'm not as concerned about that as I am about your constant blood loss through menstruation. It wouldn't be considered normal if you didn't have CML and even if it is not unusual with CML it still can't be good.

Was it your gyn who suggested ablation to remove the uterine lining? I seem to be in the minority here but I don't think it is a good thing to rush into a hysterectomy, there are too many other problems that can crop up with that, and you are so young, but there should be something that can be done for you.

Sorry I have no helpful ideas, but I wanted you to know I am thinking about you and hoping for a good resolution for you.

Pat

[everonward]

Can I support Pat here - whilst you must get the menstration problem sorted I do not believe that a hysterectomy (sp?) is the way to go. Far to many possible complications.  There are other options that can be discussed with your gyno.

Please let us know how you get on.

Marianx

[Tedsey]

Thanks Marian & Pat,

Pat, I am not that young.  I am considered an "older" mom.  But if I am anywhere near normal in this respect, I have maybe a decade or so before I am supposed to hit menopause.  The hysterectomy thing crossed my mind too.  But with such low PLT (20-30,000), surgery would have to be absolutely necessary.  I also hang on to this crazy hope to have another child some day (I would be well into my 40s though---so it is just a dream).  I am not quite emotionallly ready to move on to the next stage yet.  I even convinced my husband to take on foster children if all goes well and I am alive and well when my kids enter school.  I won't let him get rid of the baby stuff.  Of course, I am going to juggle all this with my dream of being a microbiologist...  Nevertheless, I know I am blessed with the two kids I have.  But I always felt I had enough love in my heart to take on another child that needs a loving home.  Too bad for this CML thing...puts a wrench in the works.  Sucks!

Waiting to hear back from my hem/onc whether or not she things a gyn will help.  She has not felt it was neccessary in the past.

Thanks,

Teds

[hannibellemo]

Teds,

You are in your 30s. that's damn young in my book! Your onc is a specialist in cancer, your ob/gyn is also a specialist. Whether or not your onc thinks it's necessary or not really isn't her decision to make, it's yours. Listen to your BIFs who care about you and make an appointment with your ob/gyn. I can appreciate that you are not willing to shut the door on future little Tedsies so make sure he/she understands that. I would also assume that ablation would eliminate any future offspring.

This could be totally unrelated to your CML or TKI. When I was your age and after having 2 kids I started having all sorts of weird issues and put off going to the doctor.

then when I did finally go I messed around seeing the GP for almost a year until he finally said, Enough - it's time to see a specialist." All I had to do was tell the gyn what my weird symptoms were and he knew exactly what was wrong and what to do about it. A very simple fix and I wasted over a year being miserable.

It won't hurt and it could help.

Take care!

Pat

[GerryL]

Hi Teds,

I have nothing new to add, other than I agree with Pat's comments - won't hurt to get someone who specialises in the field to check you over.

Gerry

[Tedsey]

Thanks my BIFs!  I will make an appt. tormorrow.

Teds