Chronic Myelogenous Leukemia (CML) Support Group

Chronic myelogenous leukemia affecst the balance of blood cells in the body, disrupting the normal balance. The cancer cells eventually begin to outnumber and push out the good cells, and could lead to anemia and easier bleeding/bruising. If you or a loved one is diagnosed with CML, this is the community to discuss your experience.

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dealing with the anger, etc

i've been diagnosed for almost 2 months now and one of the things i'm starting to notice in myself is that the longer this goes on the more hopeless and angry i feel. it feels so unfair. i'm angry that i'm sick, i'm angry that my meds make me feel worse than before i was on them, when my only significant issues were occassional abdomoninal pain and exhaustion. i'm depressed. i'm having lots of side effects from gleevec--rash, diarrhea, swelling (around my eyes in the morning and ankles in the evening) bone and muscle aches, etc.

how do you deal with this? it makes me want to give up. i know i don't get that option but i feel like it. somedays it feels like it would be easier just to die and be done already. :(

any thoughts on dealing with this? (i already started therapy, had my first session last week)

Replies

Tentbuilder
Tentbuilder

Dear Fellow Sojourner, I'm a couple of months further down the road than you, and have experienced some of the same symptoms. When I'm feeling discouraged and/or depressed, I try to think of the fact that I don't have to do the "traditional" therapies that have much more overall difficult side effects. Your seeking help through therapy is one of the best things you can do for yourself and I commend you for doing so! I also try to immerse myself in things that bring me joy, like reading and being outside with people and nature. As a person of faith, I pray, and today, especially for you.
deleted_user
deleted_user

Hello,

I am very sorry to read that you are having troubles dealing with gleevec. You should speak with your oncologist he may want to reduce the dosage or to shift to antother TKI which may cause you less side effects (I have been under dasatinib for 3 months and have no side effects). Don' give up I am sure you will get through this!

I wish you the best!
Pierre
wombat5
wombat5

Hi castlefibers
You're still in the early stages following diagnosis, add in your side effects and it is understandable how you feel. It's good that you're talking with someone. As Pierre said there are another two TKIs if the Gleevec side effects prove intolerable. I have a couple of suggestions for your side effects. Gleevec rash - try an antihistamine + a topical antiseptic cream (if it is the typical Gleevec rash - normally on the back of the legs and looks a bit hives (just a lot of it)). I took the antihistamine Periactin.
Diarrhea - try a probiotic supplement, helps with the gut; I also found that coffee intitally set me off, though I am able to drink it again now. So keep an eye on your diet to see if anything in particular affects you.
wombat5
wombat5

Fluid tablets are the only thing that really works for the fluid retention. I don't eat a lot of salt, drink plenty of water and exercise, but the fluid tablets are the only things that really seem to work. Just make sure to keep an eye on your potassium levels, as the Gleevec can impact this.
Try a Calcium, magnesium & vit D supplement for the joint pain as Gleevec can also affect your calcium and magnesium levels. Just make sure you take the calcium a few hours apart from the Gleevec as they can interact with each other. The other thing is CML can be affecting your bones, so until the leukemia is out of the marrow some people experience bone pain.
Hopefully things improve for you and you can start to enjoy life again, though at the moment that might seem a long way off.
Take Care.
Beth1952
Beth1952

I've been on Gleevec for about 16 months now and my body is finally adjusting to it. I had all the side effects you have and more. The diarrhea was the worst. Immodium was my friend. I couldn't take probiotics, it made matters worse for me.

Take the Gleevec with a good size meal and drink lots of water daily. My doctor would not lower the dose or change drugs. As long as my problems were not life threatening, she encouraged me to stay with it. She said it can take a couple years for some folks to adjust to Gleevec. It wasn't easy at times, but now after 16 months, I'm glad I did. The effects are easing up. Brain fog is the worst for me at this point.

Hang in there.
deleted_user
deleted_user

unfortunately i'm not allowed to take a diuretic because they tend to lower you blood pressure (sometimes by as much as 20 points), and my blood pressure is quite low (100 over 60 typically) and lowering it to 80 over something just isn't going to work.

i've tried some live active greek yogurt (trying to avoid more pills) and i'm also trying some ginger root tea for the nausea.

the rash is minor, relatively speaking, just little red dots all over, not even very itchy, just irritating.

things are getting a bit better lately.
deleted_user
deleted_user

One last thing I forgot to mention about nausea, I don't know for gleevec but with sprycel I was first taking it in the morning and had some nausea for several hours from 10 a.m. to 4 p.m., which was really annoying.

I spoke to my oncologist he told me to rather take the drug during dinner at 8 p.m., and since then the nausea has completely gone.
Maybe this could help you.

Pierre
deleted_user
deleted_user

Hang in there. I am 31/2 years on Gleevec. That is 1 1/2 years past the survival rate of the old treatments. I think of this time as a great gift. I am feeling like my old self once more. I still have some side effects, but try the remedies the others have mentioned, they work. The depression will lift, on the days it returns I pamper my self. I now plan for the future. Just hang on ,it is kind of like surviving teenagers. For a while it is just one foot in front of the other. God Bless
deleted_user
deleted_user

Hi,

I'm sorry to hear you're having problems with Gleevec. I have just been prescribed it and have only been taking them for a week so I guess I may have this all to come! My eyes have been really puffy in the mornings and I've felt really tired but I've been putting some eye gel on as soon as I wake up and that seems to have brought some of the puffiness down.
I know how you feel about the anger, I've felt like that for the past 6 weeks since I've been diagnosed. Its something that comes and goes with me, I've experienced therapy and I can definitely say that its a great thing to do and something that will help you immensely.
I hope everything improves for you.
deleted_user
deleted_user

Try not to get so discouraged. It's hard I know. I was diagnosed about about 8 weeks ago after going for a routine physical...COMPLETELY BLINDSIDED...and am taking Gleevec also. Some days are worse than other in regards to the side effects and mentally. Last night was hard for me as I was feeling frusted about the eye swelling and was having uncomfortable leg cramps. My husband and I were also trying to have another baby which is no longer an option so double wamy. I try to remind myself of a post I saw that said the Dr. told this particular person they would die w/CML but most likely not from CML and they were 39. Very encouraging. We are lucky in alot of respect because we do have a medicine that is available and has had such sucess where many others do not. Try to be positive and I would be happy to correspond w/any of you at any time. Some times talking about it really helps me and especially w/others who can relate.
deleted_user
deleted_user

I completely understand how you feel. I was diagnosed in March '11 after a very minor motorcycle accident. I had always been very healthy and had what I thought was a great immune system. My wife would joke that I was like Wolverine (X-Men). I would literally have all out flu symptoms and feeling great by the next day. If I called in to work (rarely) I would usually end up angry with myself because I was usually feeling better in a few hours. I was completely caught off guard with this. I was angry. The side effects made it worst because I feel worst now than I ever have. I was (I thought) in perfect health prior to my accident. Everyone would tell me, how others had it worst than I did. I've never been the type to feel better about myself because someone else was worst off than me. I'm not wired like that so that didn't work. I still deal with the anger and depression. It's gotten easier over time. The best thing I did to help with my side effects was take Gleevec right before I KNEW I was gonna go to bed. That way I slept through the side effect. It helps, mostly. Therapy is a great option. When I was first diagnosed, this site was my therapy. It felt good to know that I wasn't alone. It helps to be able to talk to people that REALLY understand what you are dealing with. I remember reading a post where someone said that their doctor told them that they would probably die WITH CML, not from it. Not sure I totally believe that, but it helps (a little). Try to stay positive, it gets easier.
Good luck.
deleted_user
deleted_user

hello I have been diagnosed for a year and a half now and the side affects were bad but they went away as time went on. Not sure if you are a praying person, but my faith has helped me so much. The depression and the hopelessness is something you really need to get help with. I wish you the best of luck and I pray that God gives you the strength that you need. Family, friends, and support groups will help you through this.
deleted_user
deleted_user

Hi, dx 2 years ago, have had every sx you list, and at times we all get discourage. I think at some point we all mourn the loss of who we were. Let yourself have those sad feelings when they come,but remember in a few days you will feel better. Think. about your children they have such unconditional love for us,let them help pull you through the bad days. Be good to yourself and remember your no in this alone. Thats why I joined today, we need each other. Sending you lots of positive energy
deleted_user
deleted_user

I know what you mean. I have had it for 2 year. and just when I think I am feeling ok, a side effect acts up and I get angry and people are oh I am so sorry, but I don't think they understand, and I don't know where to find a support group around Chicago.
deleted_user
deleted_user

Feeling angry is part of the process of dealing with cancer. First you feel why me and you feel sorry for yourself? Then the anger sets in, the good thing about the anger is it is getting you ready to fight, as this is the next step. I was on Gleevec for over 6 years ups and downs every side effect in the book. I am now on Tasigna for the last 9 months and it also has side effects. Work with your oncologist to get the right dossage and the right meds to treat your side effects. What ever you do DO NOT give up, get ready for battle and know that you have a lot of people that care for you.Deal with everyday as it comes. Your disease in time will be something that will become a normal way of life for you. Believe me it does get better, go to battle! Hugs