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Lost my MMR and feeling a bit anxious!

Hello

I have had CML for nearly four years now and have been on Glivec the whole time. Over the last 8months or so my PCR have been creeping up and up and I have now lost my MMR response, it was at about 0.01% about 8 months ago and now it is at 0.2% The hospital have told me that they are a bit concerned and are seeing me again but not for about six weeks. I have to go and have a bone marrow biopsy and I think that they will prob look to change my meds, they are going to monitor me for now. I know that they are doing all of the right things, but I am finding it hard not to get really anxious and stressed. I don't really post on here much, and I don't know if I am worrying too much as I know that the second generation drugs work well, but I am worried as I have lost my response after only four years. I just wondered what experiance you guys on the forum have had with this, family and friends are great but I wanted to make contact with some CMLers on this, I don't really know anyone else with it so hence the post.

Thanks

Kate

Hi Kate,
I do know how you feel but try not to worry. You still have a very good response & Im sure that if you need change to one of the new TKI,s you will get back to where you were & maybe get more o,s. Nilotinib is very good & has excellent results. This may be a blip so try not to worry, you are still in chronic. Your hospital seem to be on the ball, where are you treated?
The new TKI,S are the back up which we need for times like this & each & every one of us can respond in different ways to the drugs. Some people are still on the same drug 10 years on & some of us have had to change therapy & thats ok too.
Its good you have supportive family & friends, but do keep in touch here too! There is so much advice to be had & that leads to reassurance as well. There are many of us who have had the same worries as you & its good to know you arent alone.
Please keep in touch & let us know how you get on & the results of your bmb.
Wishing you all the best.
Ali

Hi Ali

Thanks for your reply. I live in Bristol and I am being treated at Frenchay hospital. I am tying not to worry but I find it hard! I suppose when you have something like CML the anxiety goes hand in hand with the diagnosis!!I have six weeks till I go back to the hospital so during that time I am going to try and not think too much!! I am hoping its a blip but my last four PCR's have gone up so it is showing a bit of a trend. Anyway, I am planning to come up to the London meeting so will hopefully meet a few others there.

Kate

Hello Kate,

I had CML since August 2004 and I am treated by Gleevec (400mg) since June 2005. I was PCRU for 2 years (2009-2011) and I lost my MMR response. I am nervous.

You have to read this article "These considerations guide our approach to the patient who has achieved CCyR but not MMR, or the patient who has lost MMR but remains in CCyR. In these instances, we do not recommend any change in therapy. We do review with the patient adherence to therapy as this is a common cause of fluctuations in PCR levels, and we may monitor more frequently (eg, every 3 months). But unless the patient loses CCyR, we do not change therapy."
Extract of http://bloodjournal.hematologylibrary.org/content/120/7/1390.full#ref-60 .

I hope that we will return to MMR, and even CMR with Gleevec. If you want to stop the TKI one day, we have to stay on a CMR for at least two years. In my case, I will wait. If I a stay on this "plateau" for years, I will change the therapy for Sprycel or another TKI.

Sincerely, Gilles

Hi kate,
Your not on your own i assure you! I have been sick with worry for a month now (4 weeks on wed since last pcr test)was doing so well on glivec attained ccr after 6 months and mmr after 12 months things were coming down nicely until feb this year pcr reslult of 0.008 best one that i had anyway in may it had gone up too 0.04 so 1 log increase anxiously waiting for the result never been so stressed out in my life! so just want to reassure you that your not alone! I have been on glivec 2 years august just gone, Isnt all this worry awful!, how fast did your results increase Kate? Hannah xx

Hi Hannah.

I my lost response over about a 8/9 month period, it just kept creeping up! I get poked and proding a lot as I am on the SPIRT trial so get my bloods done more than most. Just had a read of the report Gilles posted which was helpful (thanks Gilles). The worry is not nice, and thanks for your reply. Where are you based in the UK?

Kate

I live near Manchester in the north west Bolton to be exact ,think i read u were from bristol??? im monitored 3 monthly, some days its all I think about, the amount of reading i do on it is silly haha, but suppose it can get too u! dont think it helps that u have to wait so long for the pcr tests!!! x

Hello Kate, so sorry to hear your pcr is creeping up.

Two things come to mind, adherence and interactions, but im guessing the doctors have already asked you about this?

Are you taking any vitamin/mineral/herbal supplements that you didnt take before the numbers started to creep up? (If you are taking a lot of anything mentioned on this site it might be an idea to stop: http://www.nationalcmlsociety.org/living-cml/drug-food-interactions )
They list quite a few more foods and herbal supplements than most other sites.
Even garlic is listed there, but i still eat it :)
What kind of foods are you taking your Glivec with?

Also, since you have been such a good responder to Glivec in the past, i would think that Tasigna or Sprycel will do the trick for you if it comes to that.

I hope your pcr gets better soon.

Teddy

Yeah, I am from Bristol, us CMLers are far and wide!! Living with CML is fairly life changing and taking the Glivec is a daily reminder! Its sort of the elephant in the room some days, but you have to learn to give the elephant a bun and make it smaller and sort of make friends with it if that makes sense! But its hard, it was not what I expected to be doing in my 30's! I was diagnosed at 32.

Are you planning on going to the meeting at the Hammersith Hospital later this month?

Kate. x

Hello Kate,

My wife and I I live in Bristol, just around the corner from Frenchay but go to BHOC. I have mixed feelings about the treatment from there - how's Frenchay generally? on the plus side if this is not just a blip there are two other TKIs you can look to - Nilotinib and Dasatinib. The former is NICE approved and available from the NHS. the latter is not NICE approved but it may be possible to get through the cancer drugs fund - which incidentally was 35% underspent last year!

anyways, you have options and if you need some reassurance there is no reason why you can't set up a visit to Hammersmith for second opinions. I was 32 at dx, now 34 - should you wish to meet up for CML chat/drink any time let me know.

chris

Hi Chris

Frenchay seems ok, my comsaultant is nice and talks to you like you are a human being! You must live fairly close to me, I am not too far from Frenchay, I live near Fishponds fairly close to Eastville park. Thanks for the offer of a chat/drink, its very kind of you, and the offer goes both ways. How is the best way to get in touch with you?

Kate

Hi Teddy

I don't really take any vitamins or anything like that, I just try and eat properly! I eat loads of garlic, it seems a bit crzay that it can affect things. I normally eat a big meal with my Glivec with a good amount of carbs as it does seem to make me feel quite sick when I take it, even after nearly four years it can still make me throw up! Fingers crossed PCR will go back down again! I did respond to the Glivec fairly well so I can only hope I will to the other drugs. I just have a six week wait till I go back to the hospital to find out what the next PCR result is, so I just need to try and chill out a bit and not worry too much!!

Thanks for the reply.

kate

Hi,

I live in Emersons Green, so super near. I'll drop Sandy a line asking for your email address. I know she's away on a well deserved break so it may be a couple of weeks. if for some reason that doesn't work drop a note on the forum as i check it at least weekly.

Chris

Ah Emersons Green! They knocked down my Senior School to build part of that! I will look out for your mail.

Take care

Kate