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Recently diagnosed with CML

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Hi This is Leela from India.  I am 25 years.

 

One week before there was a pain in stomach and i lost nearly 3kgs in two weeks. So i went to gastroenterologist for checkup. He told me that spleen has enlarged and blood tests are needed.

When they performed bloodtests my wbc count are high nealy 2 lakhs and was suggested with chronic myelogy leukamia with chronic phase | katyotyping | follow up.

 

I was worried and cried at the hospital and lost conscious. My brother gave me confidence not to worry and took me to the oncologist. 

 

Doctor also given me lot of  support and given me veenat (400 mg) to take once a day every morning after breakfast. He told me to take the course for 1 year. 

They took again blood test for some acr bl test to perform.

 

The doctor has advised me to take the pill for one year and take blood test every two months.

I have seen lot of articles that there will be side effects on taking this pill.  

 

I have small doubts regarding CML:

1. Is one year is sufficient or we should take the rest of life.? 

2. What is the max lifespan of the person if we take treatment.?

3. Can you Suggest me any steps to follow while taking this course in order to minimise the side effects.?

 

 

 

Hi,

Welcome to the club nobody wanted to join.    I was diagnosed with CML 22 years ago. So Keep Calm and Carry On :)

Veenat is the generic version of imatanib (also called glyvec or gleevec).   There's quite a lot of posts about this game changer drug on this forum.   Suggest you do a search and have a good read.

To answer your questions: 

Is one year is sufficient or we should take the rest of life.?     It's likely to be longer than that and if you look at the Thread pinned at the top about the DESTINY trial then put simply, that's a trial to see what happens when people reduce the dose and then come off it.     I went on imatanib when it was in trial and was on for 15 years.  I'm in the DESTINY trial and have been drug free just over a year now.   So far, so good :)

 

What is the max lifespan of the person if we take treatment.?   The answer to that is we don't know but I'm still alive and I'm very very very well :)

Can you Suggest me any steps to follow while taking this course in order to minimise the side effects.?    Lots of posts about that and different people find that different things work for them but I'll tell you what worked for me.

I took it after a light snack and half an hour before I went to bed - that way you're asleep.  Also reduces possibility of indigestion

Drink plenty of fluids (helps flush the kidneys and reduce possibility of cramping)

Keep generally fit and active and particularly do things that stretch muscles also to help reduce cramps.   

I also drank tonic water and ate bananas (quinine and potassium) and made sure I had sufficient salt in my diet again to help reduce cramping

 

Most people find that side effects are worse in the early months and as your spleen reduces in size (which in itself makes you feel ill) AND your body adjusts it will ordinarily improve.

 

 

Welcome Leela,

1. Is one year is sufficient or we should take the rest of life.? 

Currently the situation is that the majority of patients (over 90%) diagnosed in chronic phase CML will respond very well to TKI therapy (one of which is imatinib/Glivec, or as in your case a generic of imatinib called Veenat). The majority will need to take this therapy for life although some patients who have a very stable molecular response over 2, 3 or 4 years years may be able to reduce the dose and/or stop taking therapy without loss of response. There are several clinical trials that are investigating this phenomenon.

2. What is the max lifespan of the person if we take treatment.?

You are very likely to be able to live out your normal life span as long as you continue your therapy on a daily basis.

3. Can you Suggest me any steps to follow while taking this course in order to minimise the side effects.?

Not everyone suffers side effects that are long lasting although the majority do suffer muscle aches or cramping in the first weeks or months of therapy. These will lessen certainly within the first 12 weeks.

If you have any side effects that you find difficult to manage then please let us know here and I am sure someone will be able to advise you. meanwhile try not to panic and - CML in chronic phase is a disease that for the majority is no longer life threatening due to the effect of TKI therapy.

Sandy

Hi Leela,

Sorry to hear that, i am also recently diagnosed with CML like a Month before and i can understand what you are go through.

I am not an Expert or experienced guy to advice on this. But Veenat is common between you and me.

I suggest you how to reduce the side effect of the Veenat 400 MG which i am doing the same and my side effect come down a little bit now 

1. Take the Veenat after the Food after 2 Hrs, i do it after dinner. My Dinner is usually on 9 PM and i take the Veenat by 10.30 or 11 PM and go to sleep. Initially i had sleepless night due to the Body pain (mostly leg and hand) but now it is comedown 

2. Don’t take any other additional medicine like Cold or cough medicine or Paracetamol or any other medicine without consulting your Dr.

3. My Dr suggested me to take brufen if the pain is too much and not bearable on the initial days, but please consult your DR before taking it and it should me more than 1 in 2 weeks  

4. Keep a routine Check on you WBC, Blast Cell, RBC and Platelets at least weekly once for initial 2 months and monthly once for Next 1 Yr and then as per your Dr requirements.

5. Drink lot of water, this will reduce your Muscle pain and eat well and on time as the Veenat will increase the hunger (I started 4 Meal a Day after the Veenat)

6. Walking at least 2-3 KM per day, as it helped me in reducing the Body pain. The day when I don’t walk I feel very tired and slowly the Leg pain starts and followed by hand pain mostly happens on weekend for me. I don’t know what the link between these is but it is helping me in the weekdays to do my regular office work

7. Don’t miss the Tablet even for a Single day and try to keep the same time as much as possible means if you take the tablet by 10.30 PM try to take the Tablet every day by 10.30 PM

8. Enjoy your life and do what you like to do – this will reduce the stress (for me J it does)

9. Avoid red meat, Alcohol and smoke – as much as possible. I reduced my Smoke after my CML and I am trying to quit and already become an occasional drinker after CML    

With Regards,

Shawn 

Hi leela narsimha,

i am from hyderabad(India). my wife also recenly(Jan- 20-2016) diagnised CML., her medication Levin 400mg (imatinib mesylate). If you  living in india this medicine cost  150 Rs(two dollers) each tablet. veenat cost arround 350 Rs(Five dollers) each tablet( indian rupee). she was taking  every day 9.30 P.M after dinner.starting three months she suffered some severe side effects. but now side effects come down mild.she was living normal life. dont"worry. her WHITE BLOOD COUNT  4500 COME DOWN WITH IN 15 DAYS FROM 295000. LAST FIVE MONTHS HER WHITE BLOOD CELL COUNT between 4000-5000. PLEASE CHECK UP COMPLETE BLOOD COUNT EVERY 15 DAYS.  APRIL 20 -2016 WE CONSULTED DOCTER.THIS MONTH 20-07-2016 DOCTER GIVEN APPINTMENT FOR Q-PCR TEST AND BCR-ABL TEST PERFORM.