You are here

BCR-ABL 39% @ 2 months since diagnosis

Firstly, a big thank you for this supportive site.

I’ve mostly since diagnosis, just read the posts of others to understand more about CML & taken on board the tips & advice previously discussed.

I  felt up scared & worried for the first month. The second month I thought I was getting my head in a pretty good place, with improving general blood tests results. But now I’ve got a bit of a wobble up.

I just got the BCR-ABL results and whilst they are trending in the right direction I was 70% at 1 month in and now 39%.  I’ve been doing some scary internet searching and read a number of articles indicate that for a good long term survival… I need a quicker result ..

Can anyone help me interpret this..?

Can anyone suggest any therapies / vitamins / diet that could enhance future results.

I have a generally healthy diet & am  taking fish oil, vitamins D & C.

Thanks 

 

 

 

 

 

 

 

Hi Annie

The 2 month result does not say anything at all really. Some conclusions can be drawn from a statistical point of view from a 3 month result but even that is not definite. Trend is important, even if it is slower then expected in the guidelines. So try not to worry, although I am in a similar position as you being 7 months in.

The milestones often referred online and by doctors are valid for a large patient cohort and you can not take a single patient and always strictly put them in the guideline context. Many factors must be taken into account. At least that is what was explained to me.

As a reference, after 3 months on imatinib I was 16 %. Then a switch to nilotinib low dose due to cytopenias and I was 11 % at 4 months and then 18 % after 6 months (I had a drug holiday on month 5). The last test got me overly worried of course.

But my case also reflects the imperfection of PCR testing since my 6 month FISH result was 16,6 % (coming down from 60 % at 5 months). And FISH or cytogenetic evaluation by counting cell metaphases is more reliable in the early days. The pathologist counts the actual CML cells under the microscope and calculates a ratio from healthy cells.

To sum up in regards to PCR, focus on the trend rather on the pace and always remember that PCR testing can give quite inaccurate or nonsense results in the early days.

When it comes to supplements, vitamin D is crucial. I would consider having vitamin D levels tested. There are advocates on this forum who strongly suggest high vitamin D consumption and I also belong to that group. I also had this recommended by my haematologist.

Folic acid in necessary for bone marrow recovery and vitamin C boosts immunity (together with vitamin D). Both are needed

Vitamin K2 is needed to balance a bit the high intake of vitamin D. Excessive consumption of vitamin D can make your blood vessels less plastic and that would be bad for your cardiovascluar health. Together with vitamin K those risks are mitigated.

Search this forum with the keywords "vitamin D", "vitamin K2". You will find a lot of trustworthy data from long-time CML people.

Have you had a heamatological response? If yes, then this is a sign that the medication is working. Focus on adherence and nutritional support :)

Timo

Thanks so much for replying Timo

Regarding the haematological response. In reference to white cell count, platelets and so on - all have returned pretty much to normal. Thanks for the K2 tip also.

Annie 

You are trending in the right direction.  6 months is where you need to gauge next steps.  I was 23% at 3 months (missed target) and then 1.8% at 6 months.  I am currently MMR (4 years next month).  Wait and see your next result.  I believe it will go down.  

Do not worry.  I was much worse than you I started at 97% and only got below 80% thee months later then suddenly at 6 months shot down only to stick for a long time just outside MMR which I only achieved after 2 years and then fell out of MMR again 2 years later.  Was never able to to take full dose of Imatinib for other health reasons and could not take the other TKIs then available but got back in to MMR 9 months later. I'll never be a candidate for stopping TKIs but  here I am nearly 10 years later walking 5 miles a day, cycling, riding etc at 70+ years. It is not a competition.  Everyone has their own journey. 

When I was first diagnosed patient sites seemed full of people telling each other how quickly they had achieved MMR and mentioning the correlation between the speed at which MMR is achieved and future prognosis which was quite alarming for someone struggling like me so I stopped looking at any forums for a couple of years and listened to my Haematologist, Macmillan nurse and my mentor (at my hospital they put you in touch with a CML patient further on their journey as a mentor which is very helpful) - you could always ask?

I must say this forum seems a  much more supportive place these days but if you are multilingual you could also look at support sights in other countries  as some are more focused on practical tips for coping with the side effects of TKIs or encouraging us to think of taking a TKI as like insulin for a diabetic and focus on health and well being.

The most important person to listen to is yourself don't let the numbers panic you know how you  feel.  I have only one tip if  you need iron tablets but they don't make enough of a difference or are difficult to take, accept the offer of  a ferritin transfusion - made a new woman of me.  Best wishes and Good Luck

Don't worry!

I had poor 3 month results and my platlets went haywire for a while but went on to have an incredibly fast full remission (MMR). Too many personal factors will interfere with the early months.

Plan a holiday or a class or something you'd enjoy for a about 2 months from now and focus on that instead. Keep your eyes on the Life you're going to have once everything is back to normal bloodwise.

Don't worry!

I had poor 3 month results and my platlets went haywire for a while but went on to have an incredibly fast full remission (MMR). Too many personal factors will interfere with the early months.

Plan a holiday or a class or something you'd enjoy for a about 2 months from now and focus on that instead. Keep your eyes on the Life you're going to have once everything is back to normal bloodwise.

Thank you so much for your words … I’ve stayed away from the internet since I posted this & I do feel great (normal). I had another bcr test yesterday & this time I haven’t got a target figure in my head, just am hopeful of a trend down. Enjoyed reading how active you are - this is my long term life plan too. Hope life is continuing to treat you well :)

Thanks EvaH 

I’ve had a good month & I’m feeling quite positive once again.