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Ginger

pcr
Submitted by ginger on Thu, 14/08/2014 - 04:03.
Dear Sandy,
Thank you for your information. It really helps me with clarity.
I was 100% at diagnosis; 20% IS a month later; .385% IS at 3 mos and .365%IS at 6 mos. I thought Sprycel worked faster than Glivec and was disappointed as was my onc.

I will be tested again in 2 mos and wonder why the numbers didn't drop. Wonder if my diet and stress are affecting the results. I know that I must get busy with something other than CML. I think I know now that I might not reach MMR for a long time. I heard that from Lucas.

My doctor never mentioned if I had a cytogenetic response. I hope I have.
I figured out on my own that I had a CHR by 3 mos.
Thank you for any assistance.

Ginger

Hi Ginger,
I have answered you on a new thread just to stop the other one getting overly long and confusing.

Your results are looking good to me:
100% at diagnosis
20% at 1m - that is not just a haematological response but also a major cytogenetic response with a reduction of 80% PH+ cells.
0.385% at 3m - a significant molecular response - well below the current ELNet recommendations of < 10% at 3 mths for optimal response.

0.365% at 6m- this is virtually the same result as 3 m one and there may be a reason for this apart from a response plateau .... i.e it may be that the sample tested was somehow not viable- see my post about this to Lucas and Louisa below.

There are quite a few reasons why any one sample can generate a 'blip' or a disappointing result. Ask your doctor if that sample contained an adequate amount of a control gene - either ABL1 or BCR - used by your particular lab. You would need at least 10,000 transcripts with a control gene if you were to generate a ratio % equal to MMR/MR3 i.e 0.1% BCR-ABL1. Or if the sample remained 'on the shelf' for more than 36 hrs or was contaminated in some way.

I do hope your next result shows continued downward % of BCR-ABL1 transcripts.... but so far you have responded well, and yes you have had a cytogenetic response from very early on and have now passed Complete CyR (at approx 1.5%) mark ... you have already gone further than CCyR and achieved a molecular response (MR) with 0.385% at 3m and 0.365% at 6 m.

Please keep us updated,

Sandy

ginger, your response isn't bad. if the pcr is right, you have had a CCYR - a great place to be. Even if it's a plateau, many time this is normal. it's hard to kill the high level leukemia cells and you're in the right direction. good luck and try not to stress so much. it's a cliche, but as john keating said (RIP robin williams): carpe diem :)

Dear Lucas,
Thanks so much. I am stressed!! I calmed myself down after I first talked to the doctor for 1 minute. But it took 3 weeks to get the test copy. So when I read it yesterday, I got worked up all over again and hit the sweets!
I have thought about Robin Williams, certainly don't have his talents but understand his depression.
Be well yourself. I will get myself to the exercise class.
Ginger

Dear Sandy,
Bless you. I wrote to you in the middle of the night. I did wonder why my doctor didn't ask for a retest and now I will know to ask him for one if the next test in mid October doesn't show progress. However, he told me not to worry which is impossible for me and to see him in 3 mos for my next test.

But I began thinking my numbers were on the rise and I'd be in big trouble by my next test.
I also began thinking the stress probably affects my stomach which affects the efficacy of the Sprycel. Alas, thanks to Lucas, I hit the gym yesterday!! I also started to meditate again.

I am taking your response with me to the doctor when I see him next.

You have made my day and I thank you so much. Cannot imagine how life would be without the support of the folks on this site.

Ginger

Hi, ginger!

stress is normal, but try not to live in full stress. it will worse your quality of life. I'm doing some yoga since may and it helps a lot with the stress. a friend of mine - he's a psychiatrist - told me that yoga has an anxiolytic effect. try to eat well too. it helps with GI problems.

Take care!

Hi Lucas,
Thanks. Am de-stressing consciously!
Also signed up for a chair yoga class - so far so good.
Eating with friends helps the stress level too.
My son was in Brazil a few years ago and said the people were phenomenal and I agree.
Also understand much more about the lab tests. I will definitely schedule my next test early in the week and hope for a faster turnaround.
Ginger

You're in a good place, ginger. you reached two goals of the treatment in 6 months (i'm fighting to reach the second!). now it's important to have a good quality of life and joy your day-by-day.

Brazil is a nice country. we have a lot of problems but we are much better than 25 years ago (when we didn't have a democracy). People are spontaneous and happy, but there's also a lot of violence and problems with drugs (specially crack).

p.s. you are winespritzer from the LL society forum, aren't you?

good luck!

Lucas,

You are both insightful and brilliant. And I am now exercising and trying to eat right.
I am Ginger because my onc and internist advised me to give up wine for ginger ale! My liver enzymes were moving up.
Aren't we lucky to have 2 forums to support us? I couldn't manage without them.
Decades ago, I almost went to Brazil to teach! I hope Brazil calms down.

Stay well.

Ginger

Dear Sandy,
Just got my 9 mos results yesterday - they are 0.133 IS. I think good and maybe getting to MMR. I had my blood tested on a Tuesday so a report could come back within 3-4 days. Unsure if that helped.
I am relieved that the Sprycel is working. Doctor didn't do liver tests at 9 mos. because they were OK at 6 mos.
I am a tad out of breath on the tread mill but I know I am under-exercised...always conscious of Sprycel side effects.
Low/normal blood counts probably add to my afternoon fatigue - getting used to that.
I also gained 5 lbs., probably from lots of comfort food eating for 2 mos due to anxiety over the up-coming pcr test.

I appreciate all of your knowledge and that of everyone on this site. Thank you!!!
Ginger

Hi Ginger,
look like you're already there... 0.l % = MMR on IS - you're doing well. If you're feeling out of breath when you exercise then take look t your HGB level... normal should be round l4-l7 per ml- see FAQs page.

Recently I have been trying to get my blood/tissues etc more alkaline after recently reading about sodium bicarbonate and its ability to raise the PH level of the body to less acidic state i.e to somewhere around 7.4- as consequence of a higher PH (I check my saliva with Ph strips) I have suddenly found I have a lot more energy and enthusiasm for the daily grind. I just add pinch of pure sodium bicarb to an 8 o glass of water and drink that 3 times a day. Feeling better all round so maybe you could give it try and see if it helps oxygenate your red cells (apparently it does this).

Well done on the PCR
Sandy

well done, ginger!!!!

Thanks Lucas,
Hope you are well; am sticking to the exercise and maybe because I feel less stressed right now, I haven't felt the usual fatigue in a few days.
Ginger

Hi Sandy,
Thank you for the MMR info. I just assumed that .133% wasn't quite .1% but I'll take it!!!
I am just relieved the Sprycel worked.
A biochemist friend of mine recently advised me to do the same thing with sodium bicarbonate. I am now going to give it a try.
I absolutely appreciate your help. And that primer was so informative. Thank you.
Ginger

today got my 9 month PCR at 0.190 compared to six month pcr which was 0.781 .
thanks to god. even relaxed and able to concentrate on my work.

Regards
Akash

Congratulations Akash on your continued downward MR which is within ELN guidelines for optimal response.
Sandy

Dear Akash,

Thanks for sharing. I'm sure you're feeling some relief.
I know that I am.
I too am more relaxed and getting around again!!
Enjoy life!

Ginger

Hi

I thought it might be useful to share my Dasatinib results, as I had similar concerns to yours, and the reality was different to expectations.

Dx 65%
3m 4%
6m 0.9%
9m 0.50%
12m no result
15m 0.17%
18m 0.20%
21m 0.159%
24m 0.035%
27m 0.029%
30m 0.014%

I didn't hit MMR at 12m and plateaued above MMR for nearly a year, however suddenly at the two year point, whatever resistance there was suddenly disappeared and the downward trend restarted.

It was somewhat stressful seeing several tests with no real progress. At the two year point they did a battery of tests but couldn't find anything unusual so we just continued. My consultant at Kings mentioned that they are seeing some Dasatinib 'slowness' to respond, and this kind of plateau isn't unique. I haven't read that anywhere else, I don't know on what basis he said it.

For myself I took a somewhat pragmatic view: I felt fine, things weren't getting outside CCyR and to be honest there are few better options than the drug I'm on, so I just got on with things and assumed it would sort itself out, which it has. If it hadn't sorted itself out, I'd just have to deal with it when loss of CCyR became an issue anyway and worrying didn't help, probably hindered.

My biggest stress was a few weeks ago when a letter came with the 30m results, but someone who typed it up put 0.07 instead of 0.014 - it meant I thought I'd more than doubled in 3m rather than actually halving. I only found out when I finally called Kings to check what the control gene count was, and it was realised I'd been notified of an incorrect pcr result!

I hope this is useful.

Rod

Hi Rod,
Thank you so much. I know I have few options and do consider Sprycel as my life saver! I thought at first that if I ate properly, exercised, meditated and of course took my meds, I'd be the Sprycel poster lady! That I'd even get off the drug! And my doctor encouraged me by leading me to believe I'd be MMR by 3 mos.

Well, it didn't happen. I got a big dose of reality!

So I am trying my utmost to be realistic about what could happen. Sprycel side effects are always in the back of my mind but I am trying to be more active. I used to work 24/7 and now I am retired. Yikes.

I am making a conscious effort at being CALM - not in my nature at all.
I looked at your numbers and am so glad you sent them. So, your pcr history has calmed me down.
Best,
Ginger

... "I thought at first that if I ate properly, exercised, meditated and of course took my meds..."

ok - I do take my meds with a 99% adherence, but ...ummmm.... honestly I don't do the rest!

I'm just getting around to getting fit again (went to the gym for the first time in a year last week!) but I haven't done serious exercise for years and although I remain slim it's because I am fairly brutal in restricting my diet to offset the lack of exercise, except the odd pizza, eating out...I could continue.... I also drink moderately, immoderately on occasion :-).

In other words, I act relatively normally and it seems to make little or no difference to the effectiveness or otherwise of the drugs. When I plateaued after a year I tried the healthy bit but it made no difference. By the time the pcr started dropping again, I was well back to 'normal'.

I understand worry - you're not alone there and we all do it: it would not be human to do anything else, however there is a barrier to get over in realising that worry is both pointless and counterproductive: even if you wanted to, you can't do much else to make a difference and some ridiculously high proportion of all those with Chronic phase CML who are adherent to their TKIs go to some degree of remission and live normal lives. In the highly unlikely event that the TKIs are not keeping you in CCyR, there is plenty of time to worry then.

If you can compartmentalise the worry and remember how lucky we all are to have dodged the Leukaemia bullet at least for now and the foreseeable future, you may find you can use the 'worry time' to get on with enjoying the life we've had handed back to us!

Personally, I'd head to the nearest bar with a bunch of friends and have a celebratory drink!

Rod

Hi Rod,

Thank you for your pcr results. I kind of know I might not hit the magic MMR at 12 months and am not even sure what it'll depend on. I just know I have no control over it, save take the pills daily. Your .014 is ideal. It's really kept me going and gives me great hope. I am doing my best not to let the CML rule my life. . . ha ha ha!

Yes, have resumed "bad" stuff every now and then. I even had my 1st drink in 9 months to celebrate a long awaited closing. I'm not thinking non-stop about pleural effusion or edema anymore either.

And perhaps I will make it to the Cotswolds in the near future. Yes, we're lucky for our drugs. I might even invest in Bristol Meyers Squibb.

Best,
Ginger

Hi Sandy,
Happy to get on today. My pcr was 0.385 at 3m; 0.365 at 6m; 0.13 at 9m and now 0.11 at 12 mos. My oncologist was looking for zeroes as was I. However he said I am doing well and reached a major molecular response. Is that true? He also said it was a blip when the numbers barely moved from 6m to 9m. To me, it looks like they barely moved again. I am glad they did go down though. I've been sick for weeks and been in the hospital and thought the stress would affect the sprycel's work.

But I took your reply from a few months ago, to heart and calmed down.

Thank you,
Ginger

Hi Ginger,
Your doctor is right - you are doing well and have reached MMR, and you are right too when you say your PCR results look like they have barely moved again....
your 9 and 12m results at 0.13% and 0.11% respectively, are not really that different but Bcr/Abl percentage is obviously stable and MMR (0.1%) at 12m is well within the current ELNet goals for molecular response.
Everyone is different and many of us take longer to reach those goals than others. I think I have said before, I have a friend who took 11 years to get to MMR with 3 changes of treatment. She spent most of those years just above CCyR but kept going on TKI therapy and finally (2 years ago now) reached MMR.

If your quality of life is good (side effects mild to moderate and easily managed) you will no doubt continue to respond well to dasatinib. If you want to see more zeros, you might want to talk to your doctor about a change to another TKI to see if more zeros can be generated that way. Otherwise you should be happy with your stable PCR results and may well see further drops in Bcr/Abl over time.

Try to build up your strength again- spring will soon be with us!- and move forward in confidence that you have responsive disease and dasatinib will continue doing its work- in spite of the stress ;o)

Sandy

Dear Sandy,

You are a blessing. Thank you so much for your kindness and wisdom.
Before the blood test, my doctor tried to be optimistic by telling me that at 12 mos, we should see zeroes. But I told him I'd be happy if the pcr didn't go back up and just kept moving down. So I was realistic!

I learned all that from you and this site! I'll stick to 100mg's of Sprycel unless something goes drastically wrong.

And I am working on being fit again.

Thanks a zillion.
Ginger

hi sandy & ginger,

i received my 12 month pcr 0.30. which was 0.24. at 9 month . confused to what to do.
not able to understand why is it stable or increasing.

0.24 to 0.3 is a very small increase. Even then, it depends hugely on the number of control genes and the quality of the blood sample. It's totally within margins for error.

I've had a few plateaus - and been worried like you - but then the next one dropped down.

I think that until you have something like three rises in a row there should be no real cause for concern. Much easier said than done, I know.

David.