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My father diagnosed with CML

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Hello all the wonderful people of the world. Today my father was diagnosed with CML. I don't have much knowledge of the disease. I come from a society where people are scared to death when they hear the word cancer. Seeing my hero, my father suffering from cancer came as a huge shock to me. The doctor gave some tablets named Veenat 400mg to be taken before food in morning. So I need some help from any of you reading this. Is this disease curable? Will the medicine help in the curing process? Last few days have been horrible for me so please someone help me out.

Regards
Koncho

Hello Koncho

I checked with a little searching and found that Veenat is a generic version of imatinib mesylate. That is the most usual front line treatment for CML. Imatinib is a wonder drug that inhibits that messaging protein that causes white blood cell production to go into overdrive. You will hear from some patients here who have been taking imatinib for nearly twenty years.

Hi Koncho. I know this diagnosis for your father is very scary, but most patients respond well to imatinib or one of the other drugs which are available, and have good life expectancy. There are some side effects to the drugs, which vary from person to person, but many people are able to live busy lives. In my case I did not have a day off work for CML since my diagnosis 12 years ago.

There is a lot of information on this site. Under the "About CML" tab at the top of the page you will find a section for newly diagnosed patients, which will help with many questions. Under the "Patient Info" tab there is a section on templates, which includes lists of questions to ask your doctor. Many people find that getting and understanding the information helps them deal with the mental side of the CML. That needs to be done in stages over time as there is so much information to take in, and I am sure you will help your father do that. Another reason for getting the test results as they come in, and writing them down, is that you can ask questions on here with the results, and people will understand what is happening and be able to share similar experiences.

One thing I would suggest that you check is that I was always told to take imatinib after food, not before. Please check the leaflet that will have come with the pills. It may be that Veenat has a different coating which changes that, but I think it is worth checking, as nausea (feeling sick) is a known side effect or imatinib for some people.  

Thank you Nimbus. It's good to hear the positive sides from you.

Hello Alastair. Thanks for replying and it is so great to know that you are coping up so well with the disease. I just have few questions for you, please if possible answer them for me :

1. Is the disease fully cured or are you still taking the tablets?

2. How long are the side effects supposed to last?

3. My father started taking the tablets today. I have the report of complete blood count test which includes the count of haemoglobin, RBC, WBC, platelets and etc. We were advised to take the tablets for one week and then do a blood test again. So after one week when we do the test, does the report of the blood count will be improved? I mean how am I supposed to know that the treatment is working?

Hi Koncho.

1 I stopped taking the tablets 8 months ago, but in the current state no-one will say I am fully cured. I have a blood test every 2 months. Even those who have been off the tablets for 2-3 years still have blood tests every 3 or 4 months. The term used for those who are OK for a sustained period without taking the pills is treatment free remission (TFR).

2 Everyone is different on side effects. Some people have very little; some people have side effects so tough that they have to change medicine. For me, I had bone pain for the first 2-3 months, but all the 10 years I was on 400mg, I had flatulence, occasional nausea, occasional fatigue, and cramp after I exercised. These were much reduced when I went down to 200mg dose for a year before I stopped the pills last October.

3 The best advice for your father is to make sure he takes his pills every day. THIS IS REALLY IMPORTANT. 1 week is quite quick to see a change in blood results, but there should be significant change inside a month. If WBC is very high some doctors prescribe other drugs to help reduce that.

It would help the forum help you if you can share some of his results, particularly WBC. Also if you have results for a FISH test or a BCR/ABL test (it might be called a PCR test) let us know that. These are the important results against which progress is measured. FISH is the most useful test early on to understand the extent of the disease. When FISH results get very low, BCR/ABL is a more complex test which can measure lower amounts of abnormal cells, which is typically more useful 6 or so months into treatment.

A couple of other questions. How old is your dad, where is he being treated and was it picked by chance or was he ill when diagnosed? All these will give people on here the best chance of helping you through this.

I will add one more comment - largely to save SCUBA from having to type it. It is very unlikely that CML will be the cause of your father's death; if he had to get a cancer, this is a better one to get than many. 

 

 

Thanks for the good vibes Alastair. It really helped me.

My father is 53 years old and currently he is being treated in New Delhi (India) by Dr shishir Seth who specializes in hematology. We came to know about his disease about 2 weeks ago when our family doctor told us about the decrease in haemoglobin and asked us to move to New Delhi to further checkups.

.My father started his tablets from today and there are almost no side effects. I'll upload the updated blood report after 1 week.

Sorry it just seems that I cannot upload the media.

Hi - site admin here. Uploading pictures directly to the site isn't possible at the moment. 

We're working on it. Shouldn't be too long until it's possible. 

If you upload to Imgur.com or similar, you can link to that in a post here though. 

David. 

Hi Koncho,

The side effects may take a few days to get going - I hope they won't be too bad. As they come up let us know and people can suggest things which have helped. I was nearly 50 years old when diagnosed so in the same part of life as your Dad.

If your Dad is having blood tests next week, it would be worth asking of they can check his vitamin D level. As the body releases it when exposed to sunlight it it less likely to be a problem in India than in UK. There is evidence that ensuring Vit D levels are in the normal range can help drugs like imatinib work.

Koncho,

Over 95% of patients diagnosed with CML live normal life spans. Functional cure is possible in that treatment can be stopped when key milestones are reached, but testing will likely be lifelong.

Veenat is best taken "while" he is eating so that the drug is mixed within the food. This will minimize nausea and probably eliminate it. Best to take Veenat at the same time every day so it is a routine. If a dose is missed for any reason - don't double up - just return to taking the drug as per normal.

The early months are the toughest and will determine if Veenat is working. Regular blood tests will be taken and results tracked. Over time, your fathers CML markers should be going down. His immediate goal is to get to FISH = zero. That result alone will mean he has likely beaten CML. It will take about a year to 18 months. Some patients have dramatic reductions in only a few months. We'll hope this is true for your father.

Also - be alert so that if Veenat is not working quickly enough, there are other drugs that will. Best to switch early rather than staying with the same poor performing initial drug.

Your father is going to be fine.

A few health notes:

1. Take magnesium (400 mg) per day to avoid muscle cramping that Veenat can cause.

2. Verify vitamin D status and be sure it is over 50 ng/ml (but less than 100 ng/ml).

3. Consider Curcumin.

Thanks scuba and alastair. I'll surely follow up the advices. My doctor advised to take veenat tablets before breakfast and also suggested to drink lots of water after taking the tablets. I'll also upload the blood report in the coming Tuesday. I'll need all of your advices then.

Thanks

These drugs are the equivalent of the discovery of penicillin, and very effective, 

however, many times they screw up with your blood count, especially platelets and Hemoglobins, causing to stop the drug intake, it happens to me already three times, find out what is your father BCR Abl % is 

and monitor any improvement with the drug, mine started at Upper 60% and now is at 11%, however it was 9% in May, 8% June and now 11%..! So sometimes doesn’t work as it should, but the goal is to go to zero as quick as 6 month, multivitamin didn’t work for me as well, but many who takes Curcumin swear by its property, including Scuba. So maybe body responds differently.

i wish you and your father well, keep us posted.

Thanks for the good wishes Gian.

Today I got the bone marrow biopsy report of my father. Our doctor was not available today, so I am sharing the link of my father's biopsy report. Anyone with slight bit of knowledge about the report, please be kind enough to let me know if there is something which I should know.

https://drive.google.com/file/d/1oQaRoSnux1MgP6E-Rv__h9e1qiwvIYLX/view?u...

Thanks.

Thanks for the good wishes Gian.

Today I got the bone marrow biopsy report of my father. Our doctor was not available today, so I am sharing the link of my father's biopsy report. Anyone with slight bit of knowledge about the report, please be kind enough to let me know if there is something which I should know.

https://drive.google.com/file/d/1oQaRoSnux1MgP6E-Rv__h9e1qiwvIYLX/view?u...

Thanks.

It's been a week since my father started veenat 400mg. The side-effects are not very severe which includes tendency to vomit, occasionally nausea and back pain. Today as referred by the doctor we did a cbc (complete blood count) test. The WBC count went down from 70k to 30k. The platelets count went a little up towards the normal count. However the RBC and haemoglobin went down further slightly. This causes tiredness and slight bit of dizziness in my father. The doctor advised to continue 1 more week on veenat 400 and then do a blood count test next monday. Just wanted to know from you guys if there is a chance of rise in haemoglobin and RBC or we will have to opt for a blood transfusion.

My doctor says that is the drug that cause the hgb to go down and that causes fatigue etc, she insists that food won’t do much, but i try eating enriched Iron food as often as i can, and exercise is also a big help...i didn’t know, you can get fresh blood to help coping with low HGB, if thats the case, how long can you stay after the transfusion with good value?

 

If he takes Veenat with food (bread / oatmeal), he will likely not have any nausea.

I took Gleevec back in the day in the middle of a meal, not at the beginning or end.

My doctor said if the haemoglobin falls further next week then we'll need to do a blood transfusion in order to increase the level of haemoglobin in blood. However I don't know how long the hgb in my father's blood will remain under good value as we never opted to blood transfusion earlier.

My doctor said if the haemoglobin falls further next week then we'll need to do a blood transfusion in order to increase the level of haemoglobin in blood. However I don't know how long the hgb in my father's blood will remain under good value as we never opted to blood transfusion earlier.