28 replies to this topic

[alexamay09]

Hi Everyone

I got my bcr-abl results this morning.  They are at 40% after three months on high dose nilotinib.  My doctor said that although they had fallen quite a bit, the aim was for 10% at this stage.  I've to get blood taken next week for bone marrow transplant matching. She is changing my meds to sprycel 140mg per day and I've to get another BMB in March.  She says if results aren't significantly better they will have to consider transplant. 

Has anyone had this experience and gone on to have a good 6 month result?  I am feeling a bit upset at it all and just looking for something to be hopeful and optimistic about. 

Thanks

Alex

[CallMeLucky]

Can you provide more background on your situation?  Are you in Advanced phase or anything like that?  When you say "high dose" nilotinib, I assume you mean 400Mg?  Why are you on high dose?  Also are those results from a FISH test or PCR?  It seems a bit soon to be talking about transplant considering you were only on treatment for 3 months, unless of course you are high risk for some reason. Can we assume your blood counts have normalized?

Unless you are in advanced phase, it would seem your doctor is being too aggressive and you may want to get a second opinion.  140mg of Sprycel is very powerful and it doesn't seem Tasigna has been given enough of a chance.

[Trey]

I assume you are discussing a PCR result, but you may mean FISH.  The percentages mean different things for each test. 

If PCR then it depends on the scale being used, and your starting point.  FISH is more straight-forward since it is a true percentage of leukemic cells found in the sample. 

The switch in drugs sounds like a reasonable approach, but you were responding to Tasigna, although it appears somewhat slowly.  But response is a good thing.  But again, PCR test raw percentages are not that useful unless you know the scale being used.  So ask your Onc: 1) was this FISH or PCR?  2) If PCR, what scale (International Scale or regular?)  What lab was used?  What was my PCR at diagnosis?

I would do a re-test about 4 weeks after starting Sprycel.

[alexamay09]

they dont seem to give this detailed information in the UK. the cyto genetics were done on the bone marrow. PCR wasnt mentioned. doc said that the percentage of bcr-abl genes was a good indicator of how much leukemia there is, and said that they would hope for 10% at 3 months instead of the 40% I have. its definitely not Fish so presume its PCR.  My starting point at diagnosis was 80% bcr-abl.  I don't know what scale was used. I was about 10 per cent blast cells on diagnosis so borderline chronic/accelerated. my bone marrow suggests I am in chronic phase now and I have had a haematological response. My consultant haematologist has discussed my case with a doctor specialisijg in CML. it was her advice that we prepare now just in case a BMT is necessary. if i get a significajt reduction in bcr-abl at next BMB in March, then I expect I will stay on sprycel. I have been on 400mg tasigna since September, to start 140mg sprycel as soon as tue pharmacy can get the meds for me.  I hope that is helpful information Trey  

[CDW]

Hello Alex(a),

I'm sorry to hear you're having these troubling times - it's bad enough to get the diagnosis, let alone the difficulty in finding a treatment option which suits. I find the UK does not offer the information on the test results unless you ask for it directly. I was initially treated in the US and am now in the UK and there was a distinct difference between the two. I expect you will have had FISH done on the bone marrow aspirate, correct? I also expect they will have taken blood for PCR testing. I am almost certain your PCR result will have been recorded against the International Scale (IS) - this is a good thing as it means results are typically more consistent between labs (at least to within a few %). These are questions you can have confirmed at your next appt.

You are fortunate that you have a doc who is willing to try Sprycel rather than just go straight for BMT. I'm not sure where you're being treated, but if for some reason Sprycel does not seem to work out for you I would look to see a specialist at Hammersmith as they are the UK's leading light in CML treatment. It is vital you read up as much as you can about treatment options within the NHS as i find you can't be a passenger on this journey - you have to be the driver and be able to ask the right questions of your Doc/onc. 

My only other advice is to eat a good balanced diet, get lots of rest, don't overdo alcohol and get lots of rest (again).

Best wishes

Chris 

[alexamay09]

chris, thankyou for this information. i am praying for a good result on Sprycel as i have no potential related donors and the success stats for full  bmt and ric transplant are gloomy. I am only in my mid 50's and desperately want to achieve remission.

alex

[TeddyB]

Hey alexamay.

Ive seen a few others who also have responded slow the first months, but then their responses have been better. Read more about it here: http://community.lls.org/thread/15468

Going from 80% to 40% in 3months, it seems the drugs are having an effect on the CML, just taking a bit longer than what your onc aims for.

Hopefully, 140mg sprycel will satisfy both you and your onc

Please report back when you have your next results.

Teddy

[alexamay09]

thankyou so much Teddy. i have been really tearful since yesterday, feeling like i have little hope. so frightening! i must note down the right questions to ask my doc. This is a complex illness. I went yesterday expecting good news because of haematological response and improvement in bone marrow. I did ask what was the advantage of bmb over blood and she said the bmb gives more detail including other mutations. i dont think they do FISH routinely. is this something i should ask for?   next bmb due 7 March - i will only have had around 7 weeks on sprycel by then. when i do get further results i would like advice here to help me make informed decision, e.g. when is the right time to consider transplant.  from what i've read here the dose i will be getting is pretty high. i think she is being very careful to try and get the best response. she said we could reduce the dose if necessary.

I am so scared as the vast majority seem to do so well though i think i was quite ill at diagnosis.  i also feel very alone in my situation. Thank God for this forum.

Alex

[TeddyB]

I do cytogenetic tests from the bone marrow (at dx, then at 3, 6 and 12 months) and pcr on blood (every 3 months), but it seems some of the people here also do FISH testing from blood, something we dont do in Norway, i guess the BMB`s make up for that.

I also have the "regular" CBC and liver tests.

Yes its higher than the "standard" starting dose of 100mg, and i think 140mg is usualy taken as 70mg 2 times pr day, allthough i am not 100% sure of this. Since tasigna worked there is a good chance the sprycel will work as well, and hopefully even better than the tasigna. Just remember, people have had worse responses than you, and are doing fine today on tki`s, so try to stay positive even though i know its hard The 10% PCR goal by 3 months is a fairly new treatment goal, and i would think that if you had gotten these results a few years ago, the onc would probably just have you stay on Tasigna to see what happened.

If after 7 weeks, the sprycel for some reason doesnt do its job, you could try to apply for a clinical trial with Ponatinib which has shown promise in hard to treat cases, im not sure they have any in the uk, but i would at least ask about it. In your case i would listen to Chris and go to see a specialist.

Good luck.

Teddy

[Susan61]

Hi :  I hope you do well on the Sprycel.  So many have not been able to do the Gleevec which I have been on for 12 years, and some did not respond to the Tasigna but did very well on the Sprycel.

      I would not jump to a BMT until you have exhausted everything else available.  There were no TKI drugs available when I was diagnosed in 1998, and they were pushing me for the BMT.  I saw numerous doctors, and even went through the whole testing to get ready for the BMT.  Something told me to wait, and then Gleevec was in trial.  I told the doctors that I wanted to try a TKI before going through a BMT, plus I had no match.  I was on the Unrelated Donor List, therefore, I was in no hurry.

    There is so much known now that was not known back then, so just try to be patient as hard as it may seem till they come up with a different choice for you.

   I know the anxiety you are feeling, but the Sprycel could be the answer.  Stay hopeful and Optimistic.

Susan

[alexamay09]

Thanks Susan, I dont know what I would have done without the support from this forum. I think BMT should be a last resort too and not something to rush into. It would be different if it was a guaranteed cure but its not and couod even end up shortening my life rather than the opposite. The prospect terrifies me, so while I will go to have blood taken tomorrow I want to see where I am in another few months on TKI.

Alex

[0vercast]

Unless your oncologist suspects that you may be at risk of entering accelerated phase CML, I would recommend that you stay the course for a few more months at the very least, especially if the side-effects that you experience are reasonable with your current TKI.  I had very poor results at first on Gleevec, during most of what we'll call the first trimester, but they quickly improved during the second trimester.  After 3 months, I almost switched drugs, felling that Gleevec had failed me.  Things are going well now and I'm glad I stuck with it.

I'll list my FISH results as an example of my response:

At diagnosis - 98%

After 3 months - 84%

After 4 months - 51%

After 5 months - 11 or 16% (I forgot)

After 8.5 months - 4%

[Susan61]

Please keep us updated, and we are always here to help you get through whatever is troubling you.  Everyone is different in how their body handles drugs of any kind.  What works for one, may  not work for another.  You still have options, and this is not something you have to decide right now.

Susan

[alexamay09]

Thanks Overcast - they thought I actually was 'accelerated' at the start but am in chronic now and have had some response.  However the switch to sprycel is going to take place. Your message has really helped me. I do think they panic too quickly.  My haematologist is not a CML specialist though apparently she has spoken to a specialist about my case.  If my results are better next time around then I will ask them to give me more time on TKI's.  I believe that given my suspected 'accelerated' starting point, I have actually done quite well, but my doctor made me more scared than optimistic!

ps does anyone know how I can save this thread for future reference?  I don't want to lose the good advice I've had when the thread 'disappears'.

thanks

alex

[TeddyB]

There should be a save webpage option in your web browser, under options or file, depending on which web browser you are using.

You can always do ctrl+a to select all, and just copy/paste the text to wordpad/notepad or a word document.

You can find this page again, by looking at your profile, and selecting "Content", the threads you have started will be listed there.

If you stil need help just send me a private message and i will guide you through it

[CallMeLucky]

I think your Dr is scaring the crap out of you without good reason.  The drugs are working - just not fast enough to be considered optimal.  Do you know that there were many people on Gleevec that did not respond optimally but lived without disease progression?  Your doctor is right to want the best response in the optimal time but scarring you into thinking you need a BMT is ridiculous given the fact you have only been treated for a short time.  If you stayed on Tasigna you would likely get to the response you need.  Switching to Sprycel is fine but watch with the high dose, it seems your Dr wants to obliterate cancer - that is well and good except when they forget there is a real person carrying that cancer around.  We have 5 CML drugs to treat us, plus another drug omacetaxine, not to mention various other agents in trial.  If your doctor is really concerned, they should do a mutation test so you know if there is a mutation what you are dealing with and what the best drug option is going to be.

Keep moving forward, do not let your doctor scare you, if you had no response to Tasigna at all, that would be something to sit back and say "hmm, this doesn't look so good".  Your leukemia burden dropped a good amount, switch drugs for the better response but don't sit there thinking you are going to die.  More than likely you will do fine.

[CDW]

Alex,

I agree with Lucky that your Doc is scaring the crap out of you. My experience in the USA was BMT was almost a taboo word and should now only be considered as a last resort. Contrast that with the UK experience where my new doc's opening questions involved whether i have siblings or not so he could gauge my suitability for SCT/BMT. Some docs in the UK seem a bit too frivolous with the suggestion of BMT when there is a range of treatment options available. As mentioned before, i'm not sure which part of the country you are in but seriously consider a second opinion from Glasgow, Liverpool, Southampton, Hammersmith or Exeter. Also - try http://www.cmlsupport.org.uk/forum/1 I love this LLS forum as it's really quite chatty but the UK cml forum is useful to see what trials and treatment routes are open to UK patients. Sandy is also a mine of UK specific knowledge for CML.

Best wishes

Chris

[alexamay09]

thanks again guys, you have been enormously helpful and kind.

alex

xx

[Susan61]

Hi Alex:  Listen to all the other responses, and do not let this doctor scare you.  Sometimes we need to move on to another doctor.  You said this doctor is not a CML Speciaist, and you do not even know who he is consultng with.

I always tell everyone to get 2 or 3 opinions, and get someone who treats numerous patients with CML on a yearly basis. I have never seen a specialist, but my Oncologist treated many many patients with CML.  He retired, and now  am seeing another doctor who treats a lot of CML patients. That is all you need, so that you know they are up to date on all the treatments etc.  I have had to leave a few doctors in my course of treatment, because I did not like the way I felt under their care, and I had one who was a total idiot.

      Its true that you might just be moving along slower than others, but I agree there is no reason to jump to a BMT.

      Go see someone else to see what they think.  This is your body and life.  You have every right to do what you want to do.

Susan

[alexamay09]

thanks Susan.I read about the poorer prognosis for those missing the 3 month goal of 10 per cent, and it goes from 97 to 87 per cent 4 year survival. I can't see that a BMT would necessarily give me significantly more and do not like the idea of potential horrors like GVHD and attendant chronic illness post BMT. My doc has other CML patients but I think most cases are more straightforward than mine!

your advice, like the others here, is great. I think that we, in the UK, are conditioned to accept everything our doctor tells us.

Alex

xx