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Just Diagnosed with CML at age 34

DDP
Posts: 10
Joined: Mar 2009

On March 11th 2009 I went to see a Dr. for some strange symptoms I was having, she wanted me to have blood work done, which I did the next day...a few hours later I got an alarming call from her saying that I needed to see a certain Dr. right away, an oncologist. She informed me that this Dr. wanted to see me THAT day. So my husband and I rushed over, and I was SCARED out of my mind! When they called my name to go back...I just remember being more and more scared with every step, and sitting in that room waiting for the Dr was torture, when she came in...after introducing herself, she started to explain to my husband and I that my white blood count is very high, and that she believes I have CML. (there was more to it, but that's it in a nutshell).
I just remember thinking this can't be real, this can't be happening to me, I'm only 34 years old! I feel too healthy to have cancer, I have 3 kids I need to be there for, and continue raising, and I have a great husband who I planned on being married to forever!
The doctor then proceeds to tell me she wants to take a biopsy of my bone marrow...like right then, at that moment...so it can be sent off,so they can find out if CML is in fact what I have (I have major anxiety when it comes to being poked,and prodded) so needless to say I was terrified, and with good reason, here it is March 14th, and I'm still sore!
The oncologist Dr. says that once we get the results back, and if it confirms she was right, then she wants to start me on Gleevec....which Iv'e heard great things about (I'm a little worried about side effects, but I want to do whatever I need to to kick this diseases ass)!! Hopefully the side effects, if any aren't unbearable.
I'm still having a hard time believing this is real, I don't know that it's hit me yet.
None of my family or friends know yet, I don't know how to tell them, and I'm worried they will treat me different, I don't want to be pittied, and I don't want everyone constantly asking how I'm feeling, or how I'm handling it (don't get me wrong, I know they would mean well), but I just want to try to maintain a normal life, I also don't even know if I want to tell my kids, because I don't want them to be scared.
I am curious about a lot of things, like how likely is it that this disease could take a turn for the worse,as far as it going to the phases that are considered "worse"? And What are the chances of dying from it? Or being put in a wheelchair from it? And is it important to get a second opinion? And how do you not go into a depression after finding something like this out?
If anyone with this disease could answer my questions, or let me know how, or if you told your family, and friends, and if you are taking Gleevec how it's working for you, and if you have side effects....I'd GREATLY appreciate it!
I just really need to not feel alone in this.
Thank You, Dawn

green50
Posts: 318
Joined: Feb 2008

Dawn I have ovarian cancer and been having chemo off and on for 7 years almost. I hope someone who has your condition answers and will help make you be able to be confident. All of us on the board have been scared and cant believe why so many that are young. But have a positive attitude which sounds like you do. I am not sure of your kids ages but they may be a big support to you. I let my family know and told them no pity and just help me out once in awhile. Them knowing gave me a reason I was going to show them I was going to beat this. But whatever your decisions keep strong and you will beat it. I am praying someone will answer your questions who know about your condition.
Prayers and Hugs
Sandy

DDP
Posts: 10
Joined: Mar 2009

Sandy, thank you so much for your kind thoughts and concern. How has cancer affected your life? I have cried everyday since I found out....but I know it doesn't help anything,so I'd like to try to be stronger...I'm trying to have a positive attitude,but it's hard.
It still just seems so unreal, well...I wish you the best,and will keep you in my thoughts, and prayers.
Dawn

Oscar0914's picture
Oscar0914
Posts: 32
Joined: Nov 2005

Dawn,
I was 47 when I was diagnosed with CML, as you I was totally shocked to find it out. I went through all the things you will go through, concers, questions, anger,confusion, etc. Gleevec is a great medicine and it truely works wonders. I would suggest you do as much research as you can and take a list of questions written down with you for your next doctors appointment. I always take someone with me as sometimes it can be overwhelming.
Here are just a few great sites.

http://www.leukemia-lymphoma.org/all_page?item_id=8501
Leukemia and Lymphoma Society

http://www.cancer.org/docroot/CRI/CRI_2_3x.asp?dt=83
American Cancer Society

http://www.cancer.gov/cancertopics/pdq/treatment/CML
National Cancer Institute

Here are some good support websites where you can post questions and get responses form other CML patients as well.

http://www.newcmldrug.com/

http://health.dir.groups.yahoo.com/group/CML2/?v=1&t=directory&ch=web&pub=groups&sec=dir&slk=2

I would also check to see how many patients your oncologist has with CML. If it isn't a lot you might want to be revered to a CML specialist as their are certain protocols when it comes to medication dosage and testing that need to be followed. I have a local oncologist that I only see yearly and then I have a CML specialist that I see every 3 months which is about 250 miles away from where I live.
Try to take it one day at a time. Your family and friends will react in different ways and that is fine as everyone tends to take things in differently. Having family and friends for support is a good thing.
I hope this helps, feel free to contact me if you have other questions.
Chuck

DDP
Posts: 10
Joined: Mar 2009

Thank you for responding, and for the websites. I just read your blog, do you know if all of the other health issues you have had were caused from the CML, or any of the medications you were or are on?? And are you still in remission?? My Dr. told me that I should get a second opinion, it just so happens that the Dr. who came up with Gleevec is at O.H.S.U. which is less then a 5 hour drive away from us. It does help to hear from other people who have this. I'm trying to keep a positive outlook on life.
God bless you, Dawn

Oscar0914's picture
Oscar0914
Posts: 32
Joined: Nov 2005

WOW, that would be great if you can get a referral to Dr. Druker. I think the drive would be well worth it. He is the best in the field. From what I have read his staff is great as well and they are very helpful. He has many patients that fly in from all over the world to see him.
As far as my doctors can tell me my colon issues are not related to Gleevec. However my elevated spinal pressure is related to Gleevec, Sprycel and Tasiga. From what I am told this is a extremely rare side effect though.
Yes I have been in a molecular remission for over 2 years now.. Yippie..
Trust me it does get easier. The first few months, I feel the mental part is harder then dealing with CML itself. Once you see that Gleevec is working for you it is a lot easier to get adjusted to your new "you". If you need to talk to someone in person the LLS has a program where someone who has CML can call you and answer a lot of your questions. I did this when I was first diagnosed after a few months and it did help me mentally a lot.
There are lots of places to get support so don't be afraid to ask for it if you need it.
If you have any further questions feel free to ask away and if I can help I will.
Chuck

DDP
Posts: 10
Joined: Mar 2009

Now that it has been almost 2 months since the start of this wild roller coaster, I can give more info on my wife Dawn. She was initially diagnosed with cml, but it was found out to be all. She is going on her 3rd round of chemo next week, but she is staying positive and we are waiting for the perfect donor for her bone marrow transplant. God Bless everyone who is fighting cancer, and also the wonderful people who are there helping and doing what it takes to make it a little easier.

chaser060
Posts: 2
Joined: May 2009

Hi, I was searching for new updates about CML and found this forum. I'm 28 years old. I was diagnosed with CML about 9 months ago and on Gleevec for about 8 months. I did a lot of internet research about CML on that "first" night. Once I knew what it is, then I thought that info could calm myself down, but it couldn't. I started to worry more than before.

I was also worrying about the side effect before I took Gleevec. It turned out I had lots of skin rash on my arms and legs. But amazingly (Thank God for that), after the trip to Toronto. I found out that if I stop eating beef, the rash goes away. What I'm going to say is, you might have to monitor yourself more carefully right now. Just make sure you eat well & have balanced diet, because food is our energy source. Be active and do some exercises, but don't go overload. Whenever you feel better (physically & mentally), you can slowly go back to work for a few hours to start. Get something to do and be positive. Don't just sit at home, otherwise you will then think too much about it and will start to worry again. As the time goes, you will accept it as part of your life. I'm not sure what medicine your doctor will give you, might be Gleevec or something else. Just make sure don't mix it with other OTC medicine that was for treating your cold, flu, allergies..etc unless you talk to your doctor or pharmacist first. Anyways, don't be scared, you are not alone. Let's fight for this together!!
Ken

egleason
Posts: 2
Joined: May 2009

Ken,

My Dad was diagnosed with CML in February at age 54. He recently started taking Gleevec, I guess it was a little over two months ago. Just this past week he broke out in a rash mostly on his arms and legs. I read that you said that you got a rash from the Gleevec and it was because you were eating red meat? Can you tell me a little more about this?

Erika

chaser060
Posts: 2
Joined: May 2009

Hi Erika,
Sure. My story was kind of complicated and it went up and down. I hope this can help your Dad.

I had really bad rashes on my arms and legs after I started taking Gleevec. The rashes looked like mosquito bites, but they were a bit harder when I press it. It appeared mostly on wherever I rest my body part on something for a while. Examples:
1) my wrists and elbows VS keyboard, mouse and computer desk
2) left leg vs right leg (crossing my legs while sitting)
3) arms and legs VS bed (Sleeping)

I tried an over-the-counter (OTC) cream called "Cortate Ointment 15g" a few times and it helped a bit. You can buy it in any drug store and supermarket without prescription. But it didn't not solve my problem. It might work in your Dad's case. My doctor gave me something stronger after I mentioned it to him, but still didn't make any difference. Then I went to Ontario for a short trip. The rashes went away for no reason even I was keep eating beef. When I went home (Manitoba), the rashes started to grow again on the next day. I was thinking about the humidity difference between the two places and thought that Manitoba often has lower humidity percentage than Ontario. So,I tried to use milder body wash and shampoos during shower, and put on more lotions on my body right after shower everyday. It didn't help much either!!! One day, I talked to my Aunt on the phone and she suggested me to eat less meat, specially beef !!! She couldn't tell me exactly why I shouldn't eat beef. I guess it was her experience 'cause she had cancer before. There was no hurt to try, so I stopped eating beef for 3 days, then the rashes started to go away within a week and never come back. I still eat a lot of pork and chicken and there is no problem at all. Praise the Lord !! End of story... ^_^

If you have any more questions, please feel free to ask...and God Bless !!
Ken

egleason
Posts: 2
Joined: May 2009

Thanks for the insight Ken! The rashes got so bad that the Oncologist at Dana Farber took my dad off Gleevec until further notice. This is very discouraging as the Gleevec was helping fight the CML. We're just worried about the WBC going back up because he's no longer taking the Gleevec.

Are you still taking Gleevec? It just seems like some of the symptoms from the medicine can be so severe and restricting. I know it's doing it's job by fighting the CML, but it's difficult for him to be taking a medicine that still makes him feel awful.

SusieQka
Posts: 1
Joined: Jan 2009

Dawn,
By now you have probably calmed down and are back to almost normal.
My CML was discovered after a pre-op blood test in April 30, 2007. It was a shock for sure even though I had lots of unusual bruises. White cells were enormously high and platelets extremely low. That miserable and frightening summer was spent experimenting with Gleevec and taking blood and platelets very often. After we settled on 300 mg Gleevec daily, platelets gradually increased & white cells normalized and I quit needing other people's blood to survive.
I adjusted my diet--more fresh veggies and some fruit, very little meat. And I prayed a lot. God was merciful. My melanoma dissapeared without the surgery. A miracle. Summer 2008 was good.

I have had a good year. I went back to work part-time. Side effects of Gleevec: I have had rashes on my face, like sandpaper. They felt worse than they looked. Sometimes itching around one eye. My feet get sudden painful cramps,but they last only a short time. Every person is different, but Gleevec has been a blessing to me.
Platelets are 97,000 today. That's exciting.

emde1559
Posts: 1
Joined: Sep 2009

I went trhue same situation 10 years ago...I was 40 at that time....When I read Your story I was move my self 10 yars back in time when doctor tell me same story...Yes GLEEVEC is our hope.Today I can do same work I try to be activ even pain is too bad for which I take strong pain killer medication call oxicodone 20mg 3 times a day...I remeber I didn,t want to tell anybody about my CML even my wife..(She know same day) but what I did, was that when I know for shure that illines is confirm by specialist (aprox 2 weeks) I did spoke with my 4 young children age 14 to 19 at that time..It was very hard for all of us..But I thing they have to know as soon as possible..But the thruth is that my parents and sibling didn,t know until same hope came from my specialist(cca 1 year) who ask my sibling to do blad work and specialst find that one of my brother is perfect mach for bone marrou transplantation.The transplant was good for 4 years than relaps(due to Philadlphia chromosome) and I start take gleevec since 2004...and here I am working for gowerment agenci (before CML I was a truck driver).What I do since that time is... no any plan for future... living month by month... year by year.You have to be strong and belive.. hope is always here.Try to be less in stress it,s not helpfull.Your family only can help to kope with.I am sorry for all people who get CML but specialy for young...You can contact me anytime if You need to took with someone with same condition...emde1559

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