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I just been diagnosed with CML

Hi,my name is Sue

From two years ego I had elevated white blood cell and I was too much worry and my stress level was very high waiting the blood result.Than suddenly I felt my lymph node under my armpit swollen and the doctor did xray ultra sound come back I dont have any problem just enlarge lymphnode maybe from infection and didnt go back to normal and wbc count 14 maybe from stress and they gave me xanax ,I felt great I was doing exercise and eating healthy and they check my blood every six month and wbc was 11 or 12 until july 2019 I went to the doctor for normal blood work it come out wbc 32 and he did more blood work come out I have CML. I was surprised at the result.I told the doctor maybe because I have infected toe.he said this not infection and I have to start med Imatinib Mesylate Tablets I get it just 4 days ego and I started at 8 pm every night today my 5th day I was doing well but yesterday I get really in stress situation and I drove back home and I felt really tired and weak I cant do anything my knees suddenly felt very weak until today and today I felt very cold during the night , I dont feel I can go to work Im still very weak and cold I dont know if this from stress or the med Imatinib,by the way I stopped the xanax a month ego because they have very bad side effect.I dont have family or friends around me I live in Buffalo ny and all my family live in Germany.Thank you very much for this support groups.I wish all CML patients speedy recovery.

Dear Sue,

Imatinib can be hard at start and can give you such side effects like weakness, but I need to emphasise that stress is a serious issue when dealing with diagnose.

My wife after diagnosis had problem not only with sleeping but also permanently stomach pain. We did not even notice that she was not eating almost anything for week or so. We finished in the ER. It took time to deal with the new situation and with the help of psychiatrist and some drugs she started to feel better and better. 

This forum helped a lot as well.

Take care of you, find a good doc and ask question if needed. 

Hi Sue

We seem to of been diagnosed at the same time with similar WBC etc. Looking back and for various reasons it’s almost 2 years since my WBC started to elevate and indeed I started the same meds 5 days ago 

I’m not sure about you but I was advised to take 400mg a day but to build up to this in increments of 100mg over 4 days. 

After lots of reading I stated to get stressed on what side effects and when would they appear. In reality like you I found myself getting tired in the afternoon especially and heavy weak joints and limbs. 

Its so important to stay calm and focused and look at the positive bright future you will have with the breakthrough in what TKIs bring. This site and the people are amazing with great experiences and posts  

Try and relax and adjust your day / activity where possible and let’s keep connected so we can share notes and experiences 

Mark

England UK 

 

Thank you Mark for reply.

Im taking 400 mg a day ,I was thinking to go see  herbalist but when my insurance company approved my medigation I started right away. I have appointment with my Oncologist in August 12.

Its hard to relax but I`m traying have a goodnight @ speedy recovery.

Dear Gof

Sorry to hear about your wife issues I hope she will feel better soon.After I diagnosed with CML I felt my stomach heavy and swollen and abdominal pain

I did colonoscopy and endoscopy the result show my colon very clean but my stomach has too much acid and swollen .I`m taking Omprazole 40 mg a day.and the nurse told me  I have to see the doctor soon to discuss the result. I wish the name not CML just blood disease .Good luck for your wife and have a good one.

Thank you 

Sue

Hi Sue .. how are things going?

Im 8 days in and suffering from bone and joint pain with a little Diarrhoea and sickness and get tired easily 

Its hard to get motivated but I’m intent on not vegetating and so get up for work early and take my time. I find that when I’m moving or doing things it becomes a little easier 

back to see the specialist in 15 days and ploughing through. 

Hope you are coping well ? 

Mark 

Sue,

 

Hello, I was DX in June last year.  I was in the process of actually moving back to Houston when this happened with a random blood work.  I had just retired to spend time with my father (late 80's) and I thought my sister and I who was complete opposite of myself and never close had actually bonded.  I thought I finally had a sister I never had before but after getting here everything went to heck.  People do not change and with dementia taking over my father and my sister and i pretty much over, family wise in the same situation as yourself...alone.  My friends are back up north and I decided to seek employment in Dallas.   I do have a friend here that I use to babysit and we do motorbikes and car shows together.  I can highly recommend going on the American Cancer Society and getting yourself a cancer mentor.  That is the one thing I did right...besides finding and joining this site!  You get to pick the type of cancer and gender you mentor will be and I got a WONDER woman who was DX about 19 years ago and the day she was released from the hospital is the day gleevec was released for sale and she has been on it since.  Friends or family can support you, love you...but they do not know what you truly are going through.  Someone that has walked in your shoes does.  Also check into Social outdoor groups when you strength gets up.  Hiking, biking and going to activities also helps.  Not all the events requires you feeling 100%.  

 

Stephanie