11 replies to this topic

[JoeyJoeJoe]

Hello everyone,

                         This is my first post, as I have just joined this group.  I have had CML since early 2011 and have thankfully been in remission after about six months.  In the past I have had fogginess, and different occasions where I was someplace and started to feel very foggy, get the feeling like I need to lay down, one time I was about 30 miles from home, parked for a minute, got a hit of adrenaline, started sweating and was able to make it home.  This has happened to me at other times where I was out to a sporting event and needed to turn around and go home.  It has happened a little more recently and I've had times where I felt like I was going to pass out and then I start sweating and it goes away, but I get nervous and end up leaving work early.  Has anyone else had this?, and what have you done to help.  I have in the past drank ginger root tea to help with the nausea and to get through the more nauseous times.  Any help is greatly appreciated.

[Susan61]

Hi:  Glad you joined the group.  This is what it is all about.  We are all on different TKI drugs for or CML, and some people do get side effects.  You did not mention what your taking for your CML.  I am on Gleevec, and I have had episodes of dizziness.  It does not last long, but I have had it well driving a few times.

Its hard to tell what our drugs actually do to us, because there could be a lot of other health issues that cause some of the things we get.  You could possibly be having panic attacks with the symptoms you describe.

If it continues ask your doctor.  We just share all our experiences on here, and sometimes others have the same symptoms that we do on a certain TKI drug, and will give advice on what they did to help the problem.

    Just join in here anytime and you can ask anything and share your experiences like you just did.

    I hope you do not have too many of these episodes.

Susan

[hannibellemo]

Welcome! What you described does sound like an anxiety or even a panic attack. However, it could also be just about anything, including an effect from your TKI. Have you mentioned it to your GP or Onc? It's always a good idea, because as Susan said, we get a lot of different side effects from our meds, but that doesn't mean everything we experience is a side effect.

Chemo brain, or mental fogginess happens to many of us. I'm just not sure about the physical "foggy" manifestations you are referring to.

Anyway, I'm glad you found us and I'm sure someone else will chime in with their experiences!

Pat

[Tex]

I can't comment on this from a CML perspective as I was an AML patient.  From outside looking in, I'd also want to consider BP.  How long does the dizziness last?  Low BP would only last some few seconds and you'd feel mostly back to yourself after that.  So, from what you've written, it doesn't sound like what I'm thinking of.  Still, wanted to put it there in case it was an overlooked possibility.

I hope you find your fix soon.

Blessings

[JoeyJoeJoe]

Hello.  Thanks for everyones replies.  I take Sprycel 100mg.  It may be at least partly anxiety.  I have also had C-Diff twice in the last two years, so like you said it's hard to know exactly what causes things. 

[Frogiegirl]

Hi! I was diagnosed less than 3 months ago and experience the fogginess as well. Its kind of embarrassing ill be in mid sentence and forget where I was going with the conversation. Also If I think about the fact that I have cancer for to long I start to panic, and get really upset. I have been given adavan for that so I can take it as needed. That seems to help. The feeling of being overwhelmed with the realization of our diagnosis can literally make the body sick. I hope you get some relief soon:)  Thanks for posting:)

[lundgrk1]

I can relate.  I was diagnosed with ALL on December 1st and just finished cycle 1 of my Hyper-CVAD few days ago so its affecting me quite a bit right now.  I hope it gets better.  I know it will in time but it sucks feeling so foggy right now.

Ken

http://kenlundgreen.com

[Buzzm1]

Issues with fogginess, etc

I had received a notice yesterday morning that my mailbox was overloaded and had spent an hour yesterday cleaning it out and for whatever reason, tonight, just a little while ago I noticed an old email from this forum sitting at the top of the list

Re: [Chronic Myelogenous Leukemia] - why are we sooooo tired?

calling me ... the timing was close to perfect

Hi JoeyJoeJoe  welcome to the group .. Interesting to hear about your side-effects that others experience as it seems there is no end to the possible side-effects of this type of medication. 

Hello again everyone; haven't posted here since shortly after they first switched to this different format.  Was diagnosed in 10/2009 and have been taking Gleevec 400mg since 02/2010.  Had problems with low blood pressure and became very adept at going to the ground at the first indication; this after passing out a few times.  Doctor took me off the "water pill"I was taking as part of my treatment for high blood pressure; solved most of the problem, but not entirely.   Biggest problem I have right now is taking the pill .. watch out stomach here it comes ... I have to work at having enough of the right kind of food in my stomach, and even then it still often bothers me .. my body keeps telling me it doesn't like the pill.  Have my quarterly blood test later this month; last test was weakly positive, so hoping for a better test. 

My Dr. has told me more than once, that had I been diagnosed later than 10/2009, or if Gleevec fails, I would be prescribed one of the newer medications that are perhaps slightly more effective .. my only thought was "What? and have to go through a whole new set of side-effects"  none of them are any fun.

... and in other news, TODAY IS MY BIRTHDAY ...

Buzz

[hannibellemo]

Happy Birthday! Understand exactly what you are saying about not wanting to tackle a whole new set of side effects!

Pat

[Buzzm1]

thanks Pat, I'm sure that most of us all feel that same way ... one bridge at a time ...

I am in the process of developing the world's largest blog, and one of the sub-issues of healthcare is the price of Rx drugs.

my own experience

Gleevec 400mg 30-day Rx Price (in round numbers)

10/2009 $3900

02/2010 $4300

06/2013 $6900

12/2013 $7500

and the newer CML meds are even more expensive

the practice of ever-greening drug patents needs to end ...

Medicare patients are being charged the highest Rx drug prices in the world.

Gleevec Price/Mo:     Worldwide $559.82

[hannibellemo]

The continually increasing cost of Gleevec was mentioned in an article or book that I've read recently on CML but there have been so many I can't remember which. The idea though was that when Gleevec was first offered, the cost was intended to be enough to cover the R&D, manufacturuing, advertising, etc. over a period of a few years and at that point the drug would have paid for itself. So why then, has it escalated 300% in the intervenening years? The answer can be nothing more than greed.

Pat

Found it!  http://www.nytimes.c...wanted=all&_r=0

[Buzzm1]

Thanks for the article Pat ... added it to "fixing healthcare, first things first" .. addressing 5 primary cost factors:
Fraud, Tort, Billing, Insurance, and Drug Prices

Who Spends The Most Dollars Lobbying Washington, DC?

http://www.zerohedge...g-washington-dc