26 replies to this topic

[lala]

~~~sounds like you have a very full plate.....very full for a man without cml......and many years ahead of you with your little ones.  as i say over and over again to all you young cmlers, wow, it is tough to have little ones and do everything you need to do ---  not to mention the fear of not being here long enough.  upon diagnosis, i just wanted the 7 years they gave me to get my youngest through most of college......i am on year 6 and know i have many more years with my 3 kids.........have faith that we all have many years ahead of us.......but pace yourself if you can!  i do believe in the power of positive energy.........and i try to keep life simple so i can keep up with it!!!!  sending positives to you.....lala

[janne]

Lucky,

I get a mild gastritis infrequently (preceding my CML diagnosis) which manifests as a mild bloating which belching relieves. (Is there a more feminine word for belching...? ) I never get the burning or pain either. It has always resolved with a single dose of an H2 blocker (famotidine, cimetidine, ranitidine, etc). You could ask your onc if it is permissible to take an H2 blocker (over-the-counter) short term to see if that helps. I get results with one dose. Just a thought.....not sure if all your symtpoms are connected. Good luck ...!

[Tedsey]

Thank you from the bottom of my heart to all of you who came to "my rescue".  I am sorry my response is so late.  It is clear that I have a major hormonal imbalance.  None of my docs are exactly sure what is causing it.  I had a scare yesterday when a nurse practitioner wanted me to run to the ER (I have been soaking over 20 pads a day----ick, I know).  I only felt sick once the other day for a few hours where I was faint, nauseous, and extremely tired (this is very unusual for me---even with suffering from severe anemia in the past).  I tell you, there is a marked difference between suffering from severe anemia without an iron deficiency and anemia with an iron deficiency (the former is worse).  This time, it is clear my iron stores are low (it has been over a month of menstruation for me).

I had an ultrasound and everything checked out perfect (phew!), the gyne could even tell I was ovulating.  Had a bunch of little eggies waiting to go.  So, it is not the common perimenopausal bleeding.  I am still pre-menopausal.  My gyne does not know if the bleeding is due to the TKI, but she does not think so.  However, she says my low PLT do not help the situation any.  So, this all appears to be connected.

At first, my gyne thought that provera would do the trick and "set the clock" right.  So, I took it for a week.  It stopped the bleeding for 3 days, but then the flood gates opened wider than before.  So, now I am on birth control pills.  This whole journey has been tough, because what they would normally give a normal person in the same situation, they cannot give me because of the TKI.  So, it is a race to get me to stop bleeding before I have no more blood left (passing golfball-sized clots--ewwwwww!).  I know this is icky too, but I am bleeding water tinged with red right now (almost "white" like severely leukemic blood, but since I have severe myelosuppression, this is not the case).  Nevertheless, I do not feel severely anemic.  My heart is just racing a little and I am not having trouble breathing.

I hope what I write my help someone else who is going through crazy menstrual bleeding on a TKI.  I am happy to correspond with anyone.

So, in short, my situation may or may not have anything to do with the TKI.  And the low PLT do not help the situation.  Tried provera and now trying birth control.  Between diapers (for my kids--not for me...yet) and maxi pads, we are going broke.  But, I am seeing light at the end of the tunnel and happy to be alive (see, you don't need that much red blood).

Now all I have left is an early mammogram and a cervical biopsy (for my abnormal pap).  BTW, if the nurse practitioner told me what my gyne just did, it would have saved me a lot of worry.  So says my gyne, most women on chemotherapy or immune suppressing drugs (i.e. TKIs) have abnormal paps.  She expects it to be nothing, but wants to play it safe with a biopsy.  Hearing that really took a load off along with all of your responses.

Thanks for the laughs (love the one about them "letting God out"), sharing your stories, your kindness, and concern that helped me to flee the darkness of negative thought.

Teds

[Tedsey]

Yes, I agree about the 1 serious illness per household.  Zero would be even better.  Lucky, I hope you are feeling better.  I understand how uncomfortable it can be when something else "goes awry".  I think after what we have all been though, how could we not think the worst?  I guess it will be a challenge for most of us to continuously keep our heads on straight through this illness.  And I continue to hope and pray with all my might that CML will be the first cancer that all people with it OUTLIVE!!!!!!!

Please keep posting how you are doing.  Thanks for your kind words, yet again and again.  May we continue to complain for many, many, decades ahead or share in the joy of a cure together---whichever comes first.

Teds

[Marnie]

Yikes, Tedsey!!!

I've been out of town for a week visiting the in-laws in NC without computer access, so I'm out of touch.  Sorry to hear of all that you've been going through!  Don't know how you are hanging in there with all that you're going through, and trying to maintain a normal life with the little ones.  You are amazing!

I've had my own worries about TKIs and menstruation, but they are nothing compared to yours.  I'm tired of my body being all screwed up.  Oh well.   Just get used to it, I guess.

Hang in there and hopefully all will be well sometime in the near future.  I had a friend who just had a hysterectomy because she wouldn't stop bleeding for months.  You are handling things much better than she did.

Marnie

[GerryL]

Hi Teds,

It's good to know that you've got an expert looking into it, so to speak. Fingers crossed the pill will do its magic with your hormones and get them regulated again. And with the abnormal pap smear explained, you at least have one less thing to worry about.

Hopefully the flood gates close soon and your periods return to normal. Keep us up to date with how things are going.

Gerry

[hannibellemo]

Teds,

Without over simplifying - birth control pills seem to correct a world of hormonal woes. When I was in my mid to late 30s my issue was over production of prostaglandin which was wreaking havoc on my smooth muscle tissue giving me all sorts of painful, weird symptoms.

I took birth control pills for 1 year and haven't had a problem since, if you don't count CML, of course.

Good luck!

Pat