71 replies to this topic

[mariebow]

I was diagnosed this past January and my wbc count was 86 from a normal of 4 to 13.   You need some time to  deal with this diagnosis, like the info about CML states, you will go through disbelief,sadness, schock and other phases.  And you have to deal with taking the TKI's, how the disease work,  what the meds do, telling people about the diagnosis, learning about the long term use of the TKI's, but after all this, you will find out that the sun will still come out tomorrow.  with the help of this forum, good doctors,nurses and educating yourself on cml, you will have a brighter future and since we are in this time,where there are a number of new cml drugs, where over ten years in the past like someone said on here, it was dire to have leukemia, and with a long mortality rate.  This site helped me to feel my way around early dark days, and gave me hope and understanding.  You can have a good life, we just have to adjust and take it one day at a time.  This cml gives us extra challenges in life, but you have to do what you have to do. 

[super99]

Thank you so much for the information on Tylenol and Ibuprofen.  I will check with my doctor before I take it

Best,

[TeddyB]

Marnie:

Id be careful about taking to much Ibuprofen while on Gleevec. http://community.lls.org/thread/15378

[Marnie]

Yes, Teddy. . I absolutely agree with you.  As I think I said, I pretty much avoid OTC pain meds, unless absolutely necessary.  I think it's a good idea to take as few meds as possible.  I think the current belief is that ibuprofen/tylenol are o.k. if used sparingly, but neither should be used long term.

Marnie

[cleocans]

Super,

      I took Advil when the bone pain was really bad.  A lot of times a heating pad or hot washcloth helped too.  When I started back exercising, even just short walks, the bone pain got less.  Now I lift weights three times a week and walk the rest of the days and my bone pain is almost non existent.  Sleep is very important!!  Now that it's summer break I find it is a little easier for me to get my sleep!

[Judy2]

Hi Super,

Welcome to the group. I am on Sprycel 50mg (reduced dose due to other health issues). I had a lot of muscle pain but in time it resolved itself. I also had rashes with welts and swelling and I am on prednisone 5mg daily for that. Fatigue is also an issue but I am learning to pace myself. Give yourself time to adjust, let yourself feel what you are feeling, don't be too hard on yourself. I know how overwhelming it all seems at first but know we are all here to support you. Also, be careful what you read on the Internet as there is a lot of outdated scary material roaming around. I hope everyones responses have helped you, at least you know you are not alone.

Caroline, I've been meaning to ask you, how are your kidneys?

Judy

[Happycat]

Hi, Super, and welcome. I'm late to the party this week. I am in my mid-40s, have three girls, 11,9 and 9. I was dx'd 14 months ago, and have reached MMR. I am on gleevec.

Believe it or not, there will come a time when your cml is not the major player in your life. My kids are getting older and busier. Between soccer, school, running them over to friends, dealing with tween issues, etc., I'm pretty busy. One of my twins was recently dx'd with a weird food allergy problem in her esophagus, and now instead of worrying about cml, I spend my time trying to figure out what she can eat, how I can modify recipes, and help her accept how her life has changed.

Anyway, the time will likely come when your cml will fade into the background, as the other (better) parts of your life take over.

As for the pain, I couldn't take ibuprofen (my particular problem), so I had to use Tylenol (worthless) and vicodin (better, but only took the edge off the pain). Hot showers and heating pads helped, as did Icy Hot or Ben-gay. Amazing how that stuff penetrates. What helped the most was the prednisone my onc ordered to bring down the inflammation in my bones. Between prednisone and Vicodin, I felt much better.

Hope you are feeling better,

Traci

[OhRose]

This is the perfect reply to this newbie..hope and encouragement full of experience to back it up !! I love it and it helps to reflect on how very blessed we are to have the meds which are around now. I feel like there are side effects, but we have life as well.

[Tedsey]

When I was diagnosed, I had a baby and a young toddler.  Now they are 3 and 5.  So far so good.  I really understand what you wrote in your first post.  The first thing I worried about was who would raise my children.  Should I start planning my funeral?  I still worry, but not as much.  I am your age, and although I am not a spring chicken, I still feel too young for just 30 years.  The truth is, with TKIs now on the scene, it is anybody's guess how long we will live.  No one knows.  Oncologists can try to give it a good guess, but the drugs have not been around long enough.  I kind of like it like that.  It makes my longevity as much of a mystery as anyone's.  I think many people who know me, (but are not close), are wondering why I am still not dead yet.  And with all the crazy things people have said and done to me since I was diagnosed, it is my little secret.  I am not the only one to write this in a post.  Sorry if I sound cocky, but it is either that or gloom and doom.  I prefer the former.   

I was put on Gleevec, but it didn't seem to work that well, so 1 year and 9 months ago, I was switched to Sprycel.  I had a much better response.  I am not worried in the least about how the drug will effect me in the long term.  I expect it will give me the chance to know my kids as adults.  And I do not expect that the drug that is supposed to lengthen my life ,(because of its extreme success in keeping CML from progressing), will shorten it.   So, try to put that out of your mind.  Think of it as the drug that will "save your life".  So many people are on so many different kinds of drugs.  Even the common ones have the potential of causing harm in the long run, for example, statins or SSRIs.  Right now there is not enough research to fully support that our drugs will cause heart failure or any other kind of failure.

When I went from Gleevec right to Sprycel without a break, I was violently sick for about a week (probably because I didn't have a break between drugs).  Mostly, I remember the headaches.  But I have read that many people do just fine.  I expect that whatever evil side-effect comes up, if it does, will soon subside.  I feel because you were diagnosed so early, you will quickly reach the CML milestones.  BTW, I feel great on Sprycel.  I still run after my toddlers and take them all over.  Just spent over two weeks abroad walking for miles and miles with them.  No prob.

I expect after some time, like most people here said, you will go back to most of your old life habits.  And CML, and dying from it, will not be the main thing that occupies your mind.  I hope that we will chat one day as old ladies.  Since I married and had kids late, it will be a miracle if we would chat about our grandchildren, but I would love to write a post in celebration of our kids' college graduations.

I wish you peace in this turbulent time,

Tedsey

[super99]

Thank you, Caroline, for explaining why CML patients need to stay on medication.  I hope some days researches find the way to kill off the t-cells and daughter cells so we don't have to take drugs anymore. In the mean time, I will take this life changing situation one day at a time, spend quality time with my family, and learn more about CML.

I am speechless and am blessed with the all of support I've received from this community. I couldn't believe I have found my "new" best friends from here.

Take care and again, thank you so much for your post and support.

[super99]

Thank you, cleocans, for sharing the info. with me. 

[super99]

Giles,

Thank you for referring me to both painting and music. I love both. And thank you for a warmth welcome.

[super99]

pammartin,

Thank you for your post. I have learned there are many website providing information about CML. I also thought about how I can trust these sites and don't go crazy after reading it. It's so true, each of us is unique and won't have exact same situation.

I am grateful to get to know you and everyone from this community. It's a place I found my "new" best friends.  Nice to meet you, too.

Take care,

[super99]

CallMeLucky,

Thank you for sharing your experience and making me feel life will go on. The day I heard the word "chronic leukemia" was the hardest day of my life. I couldn't stop walking while I was on the phone with the nurse. I took it pretty hard and so did my daughters.  Then I saw them being so sad and scared. That moment made me tell both of my daughters to not worry about this CML. Though, I was still shaken from the call and thought about the worst of the situation, I decided to be positive and go back to our normal activities.  I went to work (part-time) the next day and had a bone marrow biopsy 2 days after speaking with the nurse.  Then after I start reading about CML and learn that it is manageable with drugs, I felt much better.  When the oncologist confirms I have CML, I was able to take the bad news without tears. My husband was completely surprised.  I still ask myself everyday whether I was in denial or I tried to pretend or tried too hard not to cry.  I could be but I didn't think I was trying too hard. All I know is that I want my life back and will fight for this so that I can see my kids grow. There were times I became emotional and cried unexpectedly and then it went away. I told myself that's okay - I have just been diagnosed one week today. 

I've found keeping myself busy, with my part-time job, my daughters' activities, chores at home, and spending time with family, has helped me a lot in the past week.  It isn't easy but I will try my best.

It is very nice to meet you, too.  Thank you, again.

[super99]

Hi mariebow,

Thank you for being supportive. Did you find out about your wbc from a routine blood work or what made you to get a blood work?  My was from a routine/annual check up. Nothing prompted me except being sick several times within the past two years and was fatigue quite often.

I am hopeful that I will have a good, long life and adjust to CML eventually.

Take care,

[super99]

Thank you, Judy2.  Rash and swelling are what my onc. told me about side effects. He didn't mention bone or joint pain.  I will keep everyone posted how I feel after taking Sprycel - I will get it tomorrow and that would be my first day.  I might not be able to post any discussion as my hubby is going to be out of town and I'm on my own with 2 kids.  But I have good friends close by if I need help from them.

Thank you for reminding me about what I read on the Internet.

Take care,

[super99]

Hi Happycat,

I am glad to hear CML isn't a major player in life eventually.  I agreed that between my job, kids' activities and other issues have kept me stop thinking about CML. Hopefully, I wasn't in denial. Thank you for sharing which meds help you with your side effects. 

Best,

[mariebow]

I had food poisoning last year, and had diarhea so bad, that I lost a lot of fluids, and about two weeks before that, I had a colonoscopy where they found a benign polyp and cut it off, and by running off all that day, it irritated the spot where they snipped off the polyp and it started bleeding, well with being severely dehydrated and the loss of blood I was very sick, My family rushed me to the hospital, and immediately gave me fluids, and one of the  docs noticed that my white blood cells was so high, but during my four day stay there,they were more worried about the blood loss than my high wbc, and it neverr was addressed.   Well fast forward to almost a year later, I had my routine check up and I just happened to ask my family doctor, what did my medical file say from the hospital that was wrong with me, he looked at my chart and said huh! your blood count is so low on here, and he admitted that he had not checked into earlier, and he told me that he would check my blood when my lab results came into him.  Well the next day the Tyler Blood and Hematology office called me and told me that I need to schedule a visit with them because my wbc was so high.  a week later the onc told me that my blood showed CML.   I am 58 year old mother of four grown children, four grandchildren, married and love to travel with my family.  started having bad fatigue as I stated in my first post and headaches everyday,sweating down my back at night, and I am basically most of the time hot and cannot take a lot of heat.     

[super99]

Thank you, Mariebow, for sharing how you found out about CML with me.  I feel fortunate to find out about my CML every early. Even onc. said my case is unusual - low WBC but BMB is definitive for CML). He said I was lucky to have very attentive family doc.   Do you still have headaches?  I live in South Central and it gets very hot in summer (over 100 degrees) starting in June.  You can't hot live here.   I actually plan to travel to South East Asia in about 2.5 weeks. I am now wondering how I can adjust myself in a humid climate over there.  I haven't started meds. but hopefully I will get it tomorrow and take it right away.

[davicsta]

HI Super99,

I was diagnosed with CML 05/03/12 after annual labwork.  By the time it was diagnosed, my WBC was up to 41 and climbing.  My doctor put me on Gleevec and I have responded very well.   I can relate to your reaction and the shock.  I have 2 small boys, 3 and 6 and find myself worrying so much about our future.  I am experiencing alot of anxiety and depression which doctors swear are not a side affect of the medication, which contradicts the literature provide by 2 separate pharmacies and the manufacturer website.   I plan to go to my pcp or a psychiatrist to help manage my mental health until acceptance finally settles in.   It is a challenge to focus on one day at a time, to stay in the present, especially with the daily reminder of CML by taking meds.   Thanks to all the other responders for the encouraging and very informative words.