12 replies to this topic

[busdriver]

Hi friends, I have been having some pretty bad bone pain and nothing except 1600 mg of Ibuprophen helped, of course, I can't keep that up.  The Onc told me to stop the Gleevec until the pains go away and restart at only 200mg. until I see her on June 15th.  It worked for about a week and now the pain is back.  Why does this happen?  I have been on Gleevec since April 2, 2010.  I was getting a great hemotologic response and now I am worried.  Working, even part-time is getting tough between the pain and the fatigue.

I am even having trouble typing this post.  I have been taking iron for the anemia, but no change in the fatigue.  I am getting depressed.  My husband is always digusted with me because I don't feel like doing anything.  I just feel like my life is ruined.  I take paxil for depression.  Today I am really feeling stressed!  HELP!!

[Marnie]

Hey, busdriver. . .

Hang in there.  Sorry to hear about the bone pain.  It will diminish in time.  Today is my 1-year cml birthday and I have no more bone pain (though sounds like yours is worse than mine was at diagnosis).  I understand the fatigue issue. . .I still get completely wiped out by the end of the day.  I guess my only advice is to take care of yourself, exercise during the day if you can, and cut yourself a break.  Don't let your husband's reaction to your fatigue affect you (easier said than done).  He doesn't have a clue what you are going through physically or emotionally.

Things will get better, and you will adjust to your new normal.  I just spent a couple of days in a blue funk. . .it's hard to shake it off when things aren't going well. That being said. . .let's not get caught up in the cycle of negativity.  Not good for either of us.

Take care of yourself, do something that makes you feel good, and rest up when you need to.  You have a support group here, and people are pulling for you.

Marnie

[Susan61]

Hi:  The pain your experiencing is not unusual, so keep that in mind.  Just be sure you are seeing a good CML Specialist for your treatment.  Most people are on 400mg. of Gleevec as the lowest dose, but I have seen some get cut back for different reasons.  I never changed from my 400mg, even when I experienced all the side effects in the beginning.  I started Gleevec in Oct. of 2000, and I am still on the same dose.  My side effects have improved tremendously.

Be careful with that Ibuprofen.  You can over do it, and cause more trouble.  I use to use a heating pad for relief, and I still do when I have flare-ups.

     Do not worry about your husbands attitude.  He has no idea what your going through, and if you have children to take care of on top of it its not easy.

     I also used to take a antidepressant.  I got fed up with the way that made me feel also.  I weaned myself off finally after years of taking Zoloft.

    I feel so much better now without it.  I also advise you to always get copies of all your test results, and keep a file for yourself.  IT helps you keep track of how your doing, and you  have everything at your fingertips if you need to go see another doctor.  Please let us know how you do after your next lab work is done.  Hope your feeling better real soon.

Susan

[Jenn_TC]

Hi- I was diagnosed with CML in Aug. 2009. I was on Gleevec for a short while (maybe a month) and I had extreme pain in my bones and joints. After visiting a Dr. at UCSF and talking about my side effects, he switched me to Sprycel (dasatinib). This is a newer drug than Gleevec. I haven't had the same level pain. In fact, I only occasionally get achy when I'm about to menstruate. Other than that, my side effects are minimal (rash).

You might ask your doctor to research Sprycel and see if it would be appropriate for you. Good Luck!

[CherylLynn]

I am sorry that you are experiencing this pain...but as others have said it will diminish with time...I started on 800 mg/day of Gleevec in Dec 2009 and the bone pain was bad at the beginning...someone on another CML site said I should think of it as the Gleevec bombing the leukemia cells and it was just a sign that the meds were doing their job...let me ask you this - were you put on hydroxyrhea at the same time...I was for about 10 days and my Dr. told me that it was that drug that was causing the pain and that after about a month of stopping it, that drug would work its way out of my system and sure enough it did...I do get the occasional pain in my shins and wrists but nothing like in the beginning...I would question lowering your dosage below the 400 mg/day as it can produce a sub-optimal response and cause your body to become resistant to Gleevec...

Some others may be able to chime in with possibly some natural methods of helping to reduce the pain...

I'm sending good thoughts and prayers your way..

Cheryl

[busdriver]

Thank you so much, ladies, for your responses.  I ended up taking some Xanax yesterday to calm me down some.  I went to a girlfriends house and she gave me a wonderful pedi.  Support, from all of you and good friends means so much.  I will let you know how my blood work comes out.  xox,  Beth

[hannibellemo]

Beth,

There's hardly anything that can't be made better by a little pampering. What a wonderful friend you have!

Good luck!

Pat

[sandimartini47]

Hi,

Many of us have had the severe bone pain.  Your friend is right; it does feel like a war going on it in your body and it really is.  The gleevec is killng the deadly leukemia cells and that is a good thing.  Eventually, the bone pain will get better.  It has been 17 months for me and the pain is still slight some of the time.  It was bad at first for quite awhile but even though I was having bone pain, I was feeling better than I did before I started gleevec.  I knew something was wrong with me; I felt so exhausted all the time and just plain sick before I was diagnosed.  As for your husband, explain to him, this is not our fault.  It is the cml making you feel this way.  This is not the real you--just the disease and eventually you will be yourself again.  Ask him to be patient  with you and he will get the old you back in no time.  Good luck and take care and I hope you feel better soon, sandi

[mjkern]

Stay on the Gleevec!  It is likely that the pain will pass and things will get much better.  There are a number of approaches that can help, but it is best to use them together.  My 16 year old daughter has CML, and is now doing well after 2 years on 400 mg Gleevec, but the first couple months of treatment she experienced severe bone/joint pain, muscle spasms and fever up to 103 degrees. We found that the most effective approach was a combination of things:  Daily oral calcium/magnesium supplements, such as Posture D, are essential because Gleevec depletes the body's stores of these minerals, which can then lead to muscle spasms.  Ibuprofen also helps significantly.  Surprisingly, non-sedating anti-histamines such as Zyrtec (10 mg) are very helpful too as they counteract the high levels of histamine (which can mediate pain) released by CML cells.  Hot pads and stimulation with a TENS apparatus worked wonders (transcutaneous electrical nerve stimulation; http://www.lgmedsupp...slg3000kit.html ; http://en.wikipedia....rve_stimulation); The small TENS unit can be worn on a belt and even taken to summer camp.    Flexeril (10 mg), a muscle relaxant, also was probably helpful to relieve severe muscle spasms.  At the peak of the problem during an ER visit, IV calcium and Flexeril gave huge relief, whereas morphine and Valium did nothing.  Good luck.  Don't get discouraged, the worst of these symptoms will pass.  Gleevec is a fantastic drug.

[Tedsey]

Dear Busdriver,

So sorry to hear you are suffering so much.  I hope the ibuprofen is helping.  I don't want to tell you what to do.  But beware of the Xanax and too much ibuprofen.  Take as your doc prescribes.  Both are processed through the liver and so is Gleevec and Paxil (well, most things are, but we need our livers, so I don't want to damage mine more than I have to).  And Xanax can be addicting.  As for other meds, vitamins and supplements, I would suggest always checking with your onc first.  Did your doctor say you have iron deficient anemia?  I know that is one of the first things we think of when we hear "anemia", but it may not be the case.  I have become the poster child for anemia lately.  And I have sufficient iron.  My anemia is caused from either damaged stem cells or the Gleevec.  I am not allowed anything for pain because my platelets remain very low (20-40 thousand range).  Also, I am on watch for a blood transfusion.  But at HGB 7, I seem to be OK.  Go figure!  So, if and when I get pain, which is usually terrible flash headaches where I cannot talk or think clearly, I just have to deal.  I get bone and muscle pain too.  Luckily, it hasn't been too bad.  Believe it or not, exercise really helps.  Just if its walking!

How long have you been on Paxil?  It takes a few weeks for it to work.  If you haven't already, give it a little time.  If it does not seem to be working, you may want to ask about changing drugs.  There is no one-size-fits-all anti-depressant.  Paxil can also cause fatigue and so can Xanax.  I think there is a warning not to operate heavy machinery on the bottle, but I never felt tired on it.  It generally regulates after a while.  But we all vary physiologically and genetically.  And SSRIs do not work as well if just used alone without some sort of talk therapy.  If I remember correctly, you also have a young son.  Taking care of a child, working and having CML is both physically, emotionally, and mentally exhausting.  It must also be stressful when you don't feel understood by your husband.  You have legitimate complaints.  Do you talk to someone you can confide in?   I know it is hard to find the time, especially with all you seem to have on your plate.  But you are worth making the time for yourself.  It really helps me along with the SSRI (anti-depressant/anxiety med).  If your husband is willing to come along, maybe this could help him to understand how you feel.   A CML diagnosis is not a walk in the park in any respect.  It is often hard for others to understand because we look fine and "just" take a pill.  We are not usually bald and sickened with traditional chemotherapy like in the movies, (but some of us sadly are).  The not knowing is excruciating.  Well, for me, at least.  I wish you all the best.  Please take care.

Oh, I am on 400mg Gleevec and it or bad stem cells (no one is sure which) are reeking all kinds of havoc on my red and white blood cells.  I am 15% cellular (sounds like I am a cell phone) in my bone marrow.  And all my counts stay low.  However, it appears the Gleevec is working.  As much as I would love to see if lowering the dose would help my counts, ('cause now I am open to more than just CML wiping me out), I want to stay at 400mg since it appears it is wiping out the bad cells and evil mutations!  Hang in there.  You just started on this journey.  Hope to hear the Gleevec is doing wonders for you!

[busdriver]

Hi, thanks for the additional responses.  I have been on Paxil for many years.  As far as the Xanax, I am being super careful not to take too much of it.  I don't even take it every day, just when I am really feeling aggitated.  I tried something for pain, called Ultram last night, it is a non-narcotic pain reliever.  Has anyone tried it?  Again, it probably isn't good for my liver.  I think I am going to try to just deal with the pain.  Tedsey, thank you soooo much !  You are an angel.  I think you are right, maybe I need someone to talk to.  I have a program through my work I am going to look into.  I am also going to take the summer off and spend it with my daughter.  I really count on this discussion board and I want all of you to know that I will be praying for all of you everyday.  Thank you, from the bottom of my heart.

[busdriver]

Hi Marnie,

I was reading an older post of yours that said you were switching to Tasigna.  Did you switch?  My Onc is talking about switching me to that or Spryracel because of the bone pain and fatigue.  I am nervous about changing, because I am getting a hematological response that has been fabulous.  I only started Gleevec April 1.  I don't want to change to something with more side effects.  Hope you are doing great.

Thanks,

Beth

[Susan61]

Hi Beth:  I do not know how much bone pain you are referring to, but your only on the Gleevec a short time.  Personally, if I was getting a good response as you say then I would not switch so quick.  The joint pain does get better with time, and the fatigue could stay with you for a long time.  Your trying to get rid of those cancer cells, and I think the Gleevec is doing its job.  Sorry, your so depressed and frustrated.  We have all gone through that at one time or another, especially in the early stages of treatment.  That is just my opinion.  You can always switch to one of the other drugs if you really cannot get relief after a certain length of time.  Don't jump too quick into something new.