Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
I also have the NPM1 and will be asking my consultant he same question so I will let you know. The marker was still there after the 1st round of chemo. I had the 2nd round of chemo and two days ago I had bone marrow taken to see if the marker has gone after the 2nd round. Should get the results in about 3 weeks.
In the meantime Im going back in next Tuesday for my 3rd round. They will want to go for a transplant if the marker is still there, but I am going to ask if it goes on the 3rd round would I still need the transplant or can I just go for 4th chemo instead.
I am going to ask what the risk factor of it returning in either case and in an event of relapse would the transplant still be an option and likely to work. Im a bit concerned that if it came back quickly then it may be harder to go into remission for the transplant. Also the risks of having the transplant in the 1st place.
Its a lot to weigh up!
Have you had any more news or progress?
My partner was diagnosed in Nov 2016 age 42 with NPM1 AML he received 2 courses of cytarabine and daunorubicin and 2 courses of high dose cytarabine. He achieved remission after the 1st course and his odds of remission at that point were 70%. He was low risk for relapse but it wasn’t until he had all 4 courses that he was tested by a highly sensitive technique for residual markers and was told there was only a 10% chance that the test would be positive if so he would need a stem cell transplant (STC) turns out it was negative so a STC was deemed unnecessary given his low relapse chances. He did relapse however 11 months later and has had 2 more courses of the original chemo but in a trial formulation known as CPX and was told there would be a 60% chance of remission this time. He is waiting to have the bone marrow taken which will determine if he is yet again in remission. And then he will definitely have a SCT doctors say he will have a 50% chance of achieving a long term remission after that. If we had known that this would happen we would have just had the SCT to begin with but he was given the best odds possible so it was worth the risk. If your doctors have any doubt they will recommend the SCT which is the best chance of a cure. It will depend on your response to chemo, your genetic testing (my partner has the mutation of duplication on chromosome 21) and your residual disease testing. It’s a long testing road which I am sorry you are both stuck on but there are lots of people on here doing well following SCT so hope he does too. Good luck!
Thank you so much for the reply! Was he offered a trial initially? I've had the same chemo but one dose of mylotarg. Its definately a rollercoaster. Im worried about having a transplant because I've been told its dangerous and I'm scared it wont work. But the same goes for the relapse risk if they just wait and see if I just have chemo.
If the marker is still there I have no choice but to go for the SCT. I have an immune deficiency so im a bit concerned that my risk of relapse even if im told is only 20 percent will put me in a higher chance of relapse, as I beleive my immune deficiency played a part in me getting aml. I'm really hoping your partner goes into remission again. I'm sure he will.
I will know in about 3 weeks whether I will need the SCT. Its all such a waiting game!
Hi Debbie thanks for replying, our circumstances sound very similar, I finished my second lot of flag ida 4 weeks ago and I only have my first neutrophil reading of 0.1 today my counts seem to be taking forever to recover this time, thankfully i am getting home leave through the day, it looks like I will be discharged on Friday assuming neuts are past 0.3, so your ahead of me, have you had any results from your bone marrow yet mine usually take about a week, I received a letter for a consultation about a stem cell transplant next Friday which really shook me up as I really only want to think about it once I need to, I hope you get the same results I'm hoping for I'm so determined to try the 3rd course as a final hope before transplant as i know of people who are doing great without the marker and no transplant, obviously will be up to the doctor and will be based on the next results, so frustrating waiting for everything I find this the hardest part so far the constant mental battle and let downs, and not to mention being away from my children, good luck with your results keep us updated with your progress xxx
Hi thanks for responding I hope your partner has achieved remission again, this disease is so unpredictable and I guess you just have to trust in the doctors, there are a lot of people on here doing fantastic after transplant and I'm hoping that as I came through the treatment pretty much unscathed if transplant is my next option i will be strong enough to get through that and I'm sure your partner will be too, he is the same age as me, i hsve a friend who has just celebrated 10 years in remission post transplant, do keep us updated and let us know how he is getting on, support is fantastic on here and it's so nice to be able to speak with people in the same circumstances as me
Take care guys
Hope you get out Friday! Im dreading going back in for round 3. I actually find it harder each time. Its supposed to be 5 days only and if I don't get an infection I'll be let out straight after! 1st time I was in for over a month as had an infection and a virus. 2nd time came straight home and ive had nothing! Been home for 3 weeks and fine so thats probably why I don't want to go back. Plus my daughter has only just turned 6 so the worry of my prognosis has hit me again today! I'm usually quite positive but after spending all of xmas with her it makes it harder I think when you go back in.
Wont get genetic results back for a couple of weeks. I may ask a bit more in the meantime as NPM1 is a bit vague and all Ive been told so far. There are different types attached to it too, so I'm none the wiser really.
Do you mean you know people who got rid of the genetic mutation through chemo only and are doing ok? I've read that having SCT with intermediate risk prognosis means less chance of relapse. Suppose the risks of going through it are a big factor though
Chances are I won't be given a choice, but if I am I will be asking a lot of questions.
Will keep you posted. This 3rd round this week will be a double strength dose of cyterabine, so i just hope the 5 days go quick and I can get home without suffering too many problems.
Hi folks, even although I have a rare NHL I have been following your thread with interest.
I know that some of you have joined the SCT forum (link) but just wanted to highlight it again as we have lots of folks with AML who have been where you all are today and have went on to follow the magical mystery tour that is SCT and are now in long term remission.
We are always arround to answer questions.
Mike - living my new life and trying to make a difference
'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis
SCT NHL T Cell Community Champion
Thank you for your post. How long ago did you have your SCT and how are you now? I think we have all been scared about the pre transplant chemo and the risks of it all. So far I'm unsure if I will need a SCT its still 50/50 at the mo.
Hi Debbie, it is a rather long story so if make a cup of tea you could hit my forum name Thehighlander and have a look ;)
But in simple terms I had my main 4/5 months Chemo for my NHL in early 2014. It did not get me in remission so I had to go ahead with an Allo SCT with cells from my brother. An Allo SCT is always seen as the harder of the SCT routes - that was in June 2014. For a number reasons it did not work.
So I was given some R&R and went back for my second Allo SCT in October 2015.......... this was a long and hard journey but eventually the 'new me' kicked in and as of September 2016 I am in remission for the first time in over 18 years.
Had the second Allo SCT not worked I would not be sitting up in the Highlands sending you this post :)
Always around for questions.
Good afternoon all.
I think the one thing we all share is the continual struggle with the uncertainties that we face day by day in our struggle with the AML demon.
As patients we expect clear answers and guidance from the medics, but often the situation isn't black and white, it's just a muddied grey!!
In all my dealings with my Consultant, I found the percentage figures that she continually fired at me, the hardest to make decisions on. At the end of the day you don't get 30 or 40 or 70% AML, It's binary, you've either got it or you havent, it either returns or it doesn't. You survive or you don't.
I've been in remission since my first chemo in November 2016, but had three further rounds of chemo to well and truely nuke the fecker. I was discharged from hospital at the end of April 2017. I take life day by day, and try and enjoy everything, even if it's just housework. After being stuck in isolation for so long, anything else can be classed as fun!!
Love and hugs to you all.
As I've mentioned I'm going in for my third round next week. I was in remission after first round and was sent home early. The same was true after second round. I've been out for close to a month and living life normally as i think it's a case of you controlling the disease rather than the other way around.
It's only the Hickmans that is preventing me swimming. So as soon as that's gone I'm off to India, Thailand and a few places in Europe that beckon.
Life is too short and with AML who knows the future. So fuck the technicalities and just keep moving. Preferably forward.
What a tough journey! What a fantastic result in the end. I guess we have to just keep going and hope for the best.
Will have a look at you journey soon in your blog.
I went full complete remission on the 1st round. But then got told about this marker having to go so not yet out of the woods. I do beleive I will be soon, but its the will it won't it come back that I will need to really work on mentally as my daughter is only 6 and I have an overwhelming fear of not sticking around until she's grown up.
You don't want to be wishing the time away though either, so its the balance of enjoying the now while your trying to get to the next year or milestone.
I was told I had AML on the morning of my 46th birthday. Lovely birthday surprise that was!!
Now, before that getting older and the thought of turning 50 would definately not be something I would be exited about, or getting older in general. Now I'm thinking, god if I make it to my 50th birthday I will be 4 years passed diagnosis and it will be my best birthday ever!
Hey Debbie, we had a mind set of looking for the best all the time.
Some of our journey slogans were “Giving up is not an option” and "My illness DID NOT define us - our STRENGTH and COURAGE did”
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