Hi all,
This rather lengthy and the format doesn't convert neatly from the CML2 site to the UK site.
Over the past week the 'menopause' subject was discussed on the CML2 site. These post are in chronological order and discuss issues that are normally not seen on most of the CML support lists.
For those who are particularly interested in this subject, I would encourage you to join the CML2 list
http://health.groups.yahoo.com/group/cml2/
and write to the individuals yourself.
Zavie
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of cosmicgoddess1
Sent: February 7, 2008 11:01 PM
To: CML2@yahoogroups.com
Subject: [cml 2] Dasatinib Trial
Hi Everyone,
I did read with interest Susan's Message and although I usually don't
write, I just like to mention that I am still on 100 mg Dasatinib,
since almost 2 years and am doing alright with some side effects like
headaches, sore neck or Joints.
CML was not detectable since my last 2 BMB's.
I am now awaiting the results for my last BMB which was done 7 days ago.
The fluid which had been detected with my last chest xray some 9
months ago seem to have disappeared, although my breathing becomes
somewhat heavy when walking a small hill or upstairs.
Since many many weeks I do have hourly sweats every night, sleeping
for about one hour at the time, then waking wet and hot.
It is the same during day, with burning hot flushes and sweats.
I feels as if I'm burning from inside.
I started taking my Temperature when the flushes occur and thereafter.
It seems that my Temperature is always between 37.2 and 37.8.
Lower when no flushes and higher when the burning sensation occurs.
I am on HRT and don't think it has anything to do with hormones, even
if it had it would not show as Temperature.
I am wondering if anyone else is experiencing the same?
Wishing everyone Health and Happiness!
Ursula
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of Tracey
Sent: February 7, 2008 11:56 PM
To: CML2@yahoogroups.com
Subject: [cml 2] Re: sweating/hot flushes
Hi Ursula,
I'm happy to hear that you're doing so well on Dasatinib. We've
discussed sweating and night sweats in particular before and some
women have said that they also experience them.
I have been getting them with more frequency lately and with more
severity as well. It really makes for a lousy night's sleep when you
keep waking up drenched. I'm only 37 so I assume menopause is a
little bit away and my CML is controlled so I'm not sure what to make
of it.
You're not alone,
Tracey
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of seloew12
Sent: February 8, 2008 8:03 AM
To: CML2@yahoogroups.com
Subject: Re: [cml 2] Dasatinib Trial
Hi Ursula,
You've had quite a ride lately. I haven't had those heat flashes but I'd suggest that you get posssibly more frequent blood tests and I'm just assuming you've kept your onc fully informed. If you haven't then I'd suggest you see him. These side efffects are often more than just uncomfortable. So glad you've overcome pleural effusion to a great degree. It gives me hope, too.
Bests,
Susan L
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of Lisa Martinez
Sent: February 8, 2008 11:09 AM
To: CML2@yahoogroups.com
Subject: [cml 2] Re:Dasatinib Trial, Night Sweats & Hormones
Hello Ursula and everyone,
I am posting a message I sent to one of our member’s last month regarding
some experiences I have been going through. I feel this maybe related to
just us women due to the issues at hand.
I have not yet sent this to Dr Druker because I am scared to waste his
valuable time but I really feel that these drugs we are using for CML may be
causing us to be pushed into menopause at earlier ages than we would
anticipate.
This is very long but hopefully worth the read for those of you who are
interested.
My problem which I have addressed on the forum and with all of my doctors
is one that I don’t think anyone has really addressed but I strongly believe
it should be.
I have been on Gleevec 400 mgs for over 6 ½ years now. CCR & PCRU after only
60 days of treatment with Gleevec.
Side affects have subsided over the years and I have adhered to the new way
of living what is a normal life to me.
However’ it wasn’t until after starting Gleevec that I started having severe
night sweats the week prior to my menstrual cycle. Water retention has
always been way worse during that time as well. PMS has just gotten worse
and worse and we women on the list have discussed this issue many times.
Comparing notes from others it seems we pretty much are enduring the same
symptoms and we’re not all in that pre-menopausal age. I’ve chosen to
consider only the ages ranging from early 20’s to late 40’s just to rule out
the pre-menopausal theory. (Although I have kept the notes from women of all
ages too)
The last year has been getting harder and harder for me. And the last few
months being the worst.
I have had 3 surgeries for cysts on my ovaries and my ONC, my OBGYN and my
Regular PC Dr. have all tested my hormones every year for the last 3 years.
Each time they are higher than they should be for my age.
I started Gleevec at age 36 and I am now 42 ½. I have recently entered a
period in my life where I have become so emotional. It starts early in the
morning and through out the day it’s just like a rollercoaster ride with
anxiety, anger, severe depression etc. It’s pretty much a week of severe PMS
packed in one day, every day. Not just during my cycle.
I stopped Gleevec on my own the evening before Thanksgiving to see if there
is any difference. The symptoms have declined a bit but my Dr has also
increased my anxiety drug dosage as well. I started back on my Gleevec last
night after my family pressured me. But I seriously think that Gleevec may
have been having an impact on my hormones.
I have heard rumors that Chemo can make you start menopause early but I also
heard that Hormone therapy can cause cancer and I don’t want a secondary.
I haven’t posted this to the group but I plan on e-mailing Dr Druker for
advice because I cannot live like I have been and I don’t know what to do
regarding the hormone replacement therapy?
I’ve been considering switching CML drugs to see if that would help but I
think its time someone brought this issue to Dr Drukers attention as I know
we have had so many discussions on the board about it but everyone of us
have just pretty much shrugged it off. The Dr’s have as well….but I cannot
do it any more. I need help because there are literally times that I feel
like I am loosing my mind and I’m ready to check into or out of somewhere.
I went through my periods of depression initially and being the positive
person I have always been, I have made it through so much. Including the
loss of one of one of my son’s 5 years ago. You never get over that but you
do get through it one day at a time. Lately I‘m lucky if I can make it
through a morning without breaking down and sometimes I HAVE NO CLUE WHY? I
have no clue how I make it through a days at work.
My concern here is after so many years, could this be one of the long term
affects that gleevec and the other class of drugs may be having on us?
Added Note 2-8-08 : My last surgery was 11-28-07 I had one normal month
where I was feeling great. January 2008 my abnormal bleeding has started
again. Some of the other things have subsided-Depression etc.
Surgery again? I don’t think so… My theory is that my high hormone count is
causing too much ovulation which in turn is causing cyst that is causing me
to bleed abnormally. Can I get a Dr. to agree with this? Not yet… and lately
my night sweats have been consistent as oppose to the week prior to when my
cycle is suppose to begin.
Lisa Martinez
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of mary mary
Sent: February 8, 2008 11:57 AM
To: CML2@yahoogroups.com
Subject: Re: [cml 2] Re:Dasatinib Trial, Night Sweats & Hormones
I will agree with this post. I was told by my oncologist once I started Gleevec I would begin menopause and at the 4 month mark in Dec. '04 I had. I still get night sweats periodically and will heat up like a little heater even with one finger contact in the night. I am currently on Sprycel, although I still have aches and pain, it is nothing like when I was on Gleevec. Prayers to everyone.
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of Tracey
Sent: February 8, 2008 6:58 PM
To: CML2@yahoogroups.com
Subject: [cml 2] Re:Dasatinib Trial, Night Sweats & Hormones
Hi Mary,
I'm not sure why your oncologist told you that once you start taking
Gleevec that you'd begin menopause because it seems that the majority
of us have had the exact opposite experience. We actually get
hormone surges and despite years of Gleevec, still haven't started
menopause.
Lisa, my experiences have been very similar to yours. The only
exception is that while I also get the cysts, they don't cause any
bleeding and they don't seem to be any problem for me. The type that
I get are called corpus luteum cysts and they go away on their own.
The annoying hormone that I seem to have surging on and off is
prolactin. I did email Dr. Druker about this years ago and he told
me that he was unaware of any hormonal issues that could be caused by
Gleevec. I had every test done that could possibly explain the
prolactin and nothing was ever found so I don't know what to think
about it.
Like you, I'm also getting more and more sweating at night as I start
my 6th year of Gleevec. It used to only happen the week before my
period, but now it's starting to happen much more regularly and at
any time of the month.
The emotional issues that you describe are very new to me but sadly,
I must admit that I'm experiencing them too (which I never had to
deal with before and I'm not sure what to think of them either).
Tracey
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of mary mary
Sent: February 8, 2008 8:03 PM
To: CML2@yahoogroups.com
Subject: Re: [cml 2] Re:Dasatinib Trial, Night Sweats & Hormones
I was actually told that by several specialists - it could have been related maybe to my age as I was in my forties when diagnosed. I am not overly concerned as I am just thankful and very grateful that I am graced with one more day each day. Emotionally I have been fortunate too as it has not effected but an occassional unexpected melt-down.
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of marri35
Sent: February 9, 2008 10:45 PM
To: CML2@yahoogroups.com
Subject: [cml 2] Re: Dasatinib Trial
Ursula,
I'm 35 on now 100mg once day. Just when I thought there was a side
affect that was my imagination. I've been having "hot" flashes. My
temp is usually slightly elevated at 100.4 F or so. I don't start
sweating because it's been so cold. I just adjusted my dose down
yesterday from 140 a day. I've been getting winded this past week. I
know the hot flashes are not hormonal as my periods are pretty
regular and I'm only 35! Just thought you'd like to know. I don't
find Ibubuprofen makes a difference with the hot flashes (not a
fever.) I don't get night sweats, but kick off the blankets etc. Take
care.
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of Tracey
Sent: February 9, 2008 11:21 PM
To: CML2@yahoogroups.com
Subject: [cml 2] Re: hormones
Hi Marri,
I just wanted to point out that you don't have to be menopausal to have
hormonal surges and imbalances. Most of us "younger" women still get
our periods regularly but yet have significant hormonal fluctuations.
Having your period just means that you've ovulated, it doesn't
necessarily indicate what your hormone levels are.
I've seen articles showing that even men on Gleevec are having hormonal
side effects (low testosterone) so you really can't rule out hormonal
side effects just because you have a regular period. Of course that
doesn't mean that your problems are necessarily hormone related either.
Tracey
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of Terry Tipton
Sent: February 10, 2008 6:57 PM
To: CML2@yahoogroups.com
Subject: [cml 2] (unknown)
Tracey,
I understand what you're saying. My point which I guess I failed to make is that I don't think I'm at that point where I would NORMALLY be going through menopause and that some of these things are probably related to the medications. For normal ovulation to happen you need relatively normal hormone levels. You could still have your period without ovulation in some cases, however......as in PCOS (poly cystic ovarian syndrome) where unbalanced levels of testosterone (because of high levels of insulin) over ride the action of the relatively lower levels of progesterone which would naturally cause ovulation to happen. Anyway, I hope I didn't cause any confusion.
Marrianne
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of Lisa Martinez
Sent: February 11, 2008 11:02 AM
To: CML2@yahoogroups.com
Subject: [cml 2] Re: hormones
Marri,
What I am trying to figure out as many of us have been over the years is:
are we experiencing the same or some of the same symptoms and what might it
be related to.
The doctors told me I wasn't menopauslal either and I was diagnosed at age
35 and that's when all these problems began. So the fact that you are having
the night sweats too doesn't mean you are menopausal either. I just believe
that we are having hormonal imbalances that may be causing these side
affects.
I have been on Gleevec for over 6 years now and the abnormal bleeding just
started last year.
Lisa Martinez
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of Rebecca Rosen Lum
Sent: February 11, 2008 11:43 AM
To: cml2@yahoogroups.com
Subject: RE: [cml 2] Re: hormones
I was having copious, abnormal bleeding that would go on for days with ferocious cramps. Then I got diagnosed, started on gleevec, and whomp! They stopped on a dime and I went into instant menopause. It was my understanding that CML can bring on abnormal and very difficult menses.
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of Tracey
Sent: February 11, 2008 12:35 PM
To: CML2@yahoogroups.com
Subject: [cml 2] Re: hormones
Hi Rebecca,
That's interesting, I actually had the opposite experience. I never
had a cramp in my life until I started Gleevec.
Have you had your hormone levels tested to confirm the menopause or
are you assuming you started menopause because your period stopped?
Tracey
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of Lottie Duthu
Sent: February 11, 2008 1:54 PM
To: CML2@yahoogroups.com
Subject: [cml 2] Response to Rebecca
Dear Rebecca,
It was dejavu when I read your post. I had some of the most difficult menses with severe cramps and everything else you encountered. I remembered my classmates making a chair with their arms and carrying me to a bed in Home Ec. I was embarrased to no end to leave such a messy bed when I got up. Now I have read that they have a simple surgery for that.
I had premature menopause after a hysterectomy at age 38. The night sweats soon followed. I often thought, "Is this my reward for the difficult menses and childbearing?" I suppose I was blessed, as I only had them at night when I lay down. I was diagnosed at 67, so that part was history for me. Before my diagnosis, I did experience severe sweats 24/7, especially when I was outside working in my flower beds. I had large beads of sweat rolling from my scalp onto my eyeballs that would obscure my vision and burn my eyes. I began to wear a sweat band to try to contain some of it. Head sweating in such volume was new to me. A severe case of GERD brought me to ER and the rest is history. My "change of life" was not menopause, but CML. I often think of Scott Peck's book, where he begins with the sentence, "Life is difficult." I didn't know how relevant it would be to me for several years. Everything else up to that point had been transient.
We all have a knight in shining armor, Dr. Brian Druker, who for the most part, brought us from out of the dark hole CML had brought us in with the advent of Gleevec. Everyone clamored to get it, STI was on the lips of everyone with CML and we all sought after that holy grail. Many of us have moved on to other drugs, but it will always be the gold standard. I don't have the statistics, but I think there are more people on Gleevec than any other drug for CML. If there are any men in the group who don't understand and don't have a clue, well so be it. LOL. Thanks to Zavie for inviting me to your group.
Best Wishes,
Lottie
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of Rebecca Rosen Lum
Sent: February 11, 2008 3:49 PM
To: cml2@yahoogroups.com
Subject: RE: [cml 2] Response to Rebecca
Why does it feel so good to know you're not alone?! I can really feel for the embarrassment you describe -- I've sure been there!
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From: CML2@yahoogroups.com [mailto:CML2@yahoogroups.com] On Behalf Of cori_escontrias
Sent: February 11, 2008 11:31 PM
To: CML2@yahoogroups.com
Subject: [cml 2] Re:Dasatinib Trial, Night Sweats & Hormones
I am having the same night and day sweats. I feel this big ol flush
of hot engery rising and its very uncomfortable. I can be sitting at
a dinner party and experience one of these episodes. Everyone will
look at me and ask why I am sweating. It is embrassing because I
always feel sweaty and hot. I am only 28 and have been on gleevec for
about eight months now. I did ask my doctor about it but no answer
due to no study on the matter. I have also read somewhere that chemo
will put ladies in menopause early but I wonder if chemo pills have
the same affect. I also feel the same about replacement therapy. I
do not need another cancer. If you do ask Dr. Duker about the
matter please post any comments. I would greatly appreciate some
answers.
Thanks
Corina
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