Chronic Myeloid Leukemia.

Hi D.A.N and welcome to this corner of the Community although I am sorry to see you joining the community and to hear about your diagnosis and concerns.

I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic Myeloid Leukaemia (CML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of T-Cell Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive type of T-Cell Non Hodgkin’s Lymphoma was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of navigating this journey rather well.

CML is on the rare side so let’s look for any group members to pick up on your post and get back to you.

Sorry to hear about the lack of continuity in your consultant’s support and the issues around your treatment….. yes, in theory you should have been assigned a CNS (Cancer Nurse Specialist) although I did not have a CNS for the first 14 years of my journey as the Hospital Trust had not funded many if the posts across various departments in the hospital.

I am assuming that you are in the UK……..

In these challenging times in the NHS lots of people do find themselves in the position of having to advocate for themselves to ensure they get the best care.

When my second type of NHL appeared in 2013 I initially had to get my size 11s into the doors of the Heamatology department to ensure I was getting the care and not being lost in the system…..

I arranged a ‘none negotiable’ face to face with my consultant and had a very frank and honest discussion…… not leave the room until he heard my issues and he did admit that they had dropped the ball initially on my case…… from that point on things were fine…… it was then I was introduced to my great CNS…. 

Get on the phone and start pestering them…… if you are still having challenges do contact the PALS (Patient Advice and Liaison Service) for any further help.

As always the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a person with CML in it so worth checking.

Always around to help more or just to chat. 

Hello D.A.N.

sorry to hear of your inability to get help with CML. Five plus years ago I was diagnosed with Myelofibrosis and have been taking Ruxolitinib for going on three years now. Yesterday my check up revealed that the cancer had progressed to CML. I await the results for definite confirmation but with the “blasts” at 10% it seems more likely. I was told that my medication would be changed. On reading that you take imatinib I will read up on this inhibitor to see side effects. I do hope you get the help you need going forward. 
Naugus.

Hey D.A.N,

I have had CML for a while now and I have always taken Imatinib.  I have had lots of side effects with Imatinib (rash, pale skin, extreme tiredness, hair loss, joint/bone pain, headaches, nausea, vomiting, muscle cramps, etc) and I also have other health issues. My hospital consultant has told me a few times that I had the worse side effects with Imatinib of any of his patients. With adjustments of Imatinib (having more or less of it) over time I haven't had a different medication from Imatinib. In the beginning I was also on other medication for CML along with Imatinib.  Obviously things may be different now if I was just starting my journey. 

I have also felt like a complex case and have found that when I see another doctor or consultant about my other health issues my CML can get the blame for things.

I have learnt that you need to be your own cheerleader. Whatever your issue(s) you are having you have to keep asking questions and if necessary even nagging people at the hospital. I used to feel like I wanted to bring things up or ask questions, but I always felt like I didn't want to bother people at the hospital, so I didn't. I am not like this now and if I have to keep getting in contact with the hospital I do.

I have and do feel lost sometimes and have not been given the correct amount of help from the hospital.  You do get so frustrated and fed up with everything. I get stressed out by it all even now. 

I have had a CNS (Clinical Nurse Specialist) involved on and off in my journey with CML. Although a CNS has not always been available, contactable or seen by me.

You really need to ask your hospital consultant for a contact number or the name of a person to contact if you have problems such as your medicine isn't being delivered when it should. 

I was always told about how important it is to keep taking Imatinib. I have been messed about so many times with getting hold of Imatinib. You definitely need to give more time to ask for a new prescription before you run out of medication and then if nothing turns up in say 2 weeks, you need to be able to go back to someone and ask what is happening/where is my medication. If you run out of Imatinib then you need to be more persistent in contacting someone at your hospital to get answers and your medication. 

I also get Imatinib delivered to my home (usually 6 months worth) and lately I have started asking for a new prescription up to 8 weeks before I run out. At least with the last 3 or 4 deliveries I have given plenty of notice that I need some more Imatinib and I have run out and been without more Imatinib for around 6-8 weeks. This then effects my blood tests results. 

It depends on where you are in your treatment and how you are responding,  but I was told that I could have a two week window and it should be OK to be without Imatinib for this amount of time, but it shouldn't be any longer without a lot more monitoring and it effecting me and my blood tests results.

It is really important that you have a contact number or email from your hospital. I was always given contact details for somebody at my hospital because if you have questions or are feeling unwell or are having bad side effects I was always told that it was very important to get in touch with the hospital.

If the hospital consultant doesn't phone you when you have an appointment do you have the contact details for the Haematology department/Out Patients department you could phone to find out what is happening.  I have found that if you phone your hospital's main switchboard phone number you can be asked to be put through to the Haematology department and then you can try speaking to someone there or ask them to put you through to someone you can speak to about this.

I totally agree with you that surely if you are not having the medication regularly then that is possibly why your blood results are so up and down. Obviously I don't know all your circumstances/health issues but it may also be possible that your body is not tolerating Imatinib or it is just not working for you, then in that case you may need to change medication.

Have you mentioned to the hospital consultant that if you don't regularly take Imatinib then could this be a factor effecting your blood results?

Please note that this is only what I have been told or what has happened to me and every person is different and is affected differently by CML.

I am from the UK and am assuming that you are.........

I am sorry that you are having these problems and I hope that this may have helped in some way. I hope that do get some help from the hospital to sort things out for you. 

I also just wanted to add a few more charities to the ones that Thehighlander mentioned that you could contact for help and information:

Blood Cancer UK

Leukaemia UK

Leukaemia Cancer Society 

Cure Leukaemia 

Hi Thehighlander. I'm new to this forum, so I apologise if my articulation and message/reply style isn't the norm. I don't want to over step or ask/say anything that isn't appropriate for this space, so I will try my best.

I hope things are manageable/better/as good as possible for you. Am I ok to ask you how you are doing now? Can I also ask how your CNS has supported you since you pushed so hard to ensure you got the much needed help from the CNS?

You would he correct in assuming that I am in the UK, and getting "treatment" through the NHS. 

Thankyou! I WILL definitely take your advice. My energy levels are limited, but I will contact them very soon. Sometimes it feels like I'm just repeating myself and experiencing "groundhog day". Like, when you already find life difficult, but you try to sort things out, but just doesn't go anywhere. Constantly having to do admin for yourself, not only in the "cancer" area of life but in other aspects too, and it all gets too much leading to burn out. This makes following up with my CML seem like a huge chore. 

Anyway, (too much information ) I will give it another go. I think I might just visit the macmillan part of the hospital when I next visit, and also might visit PALS.

Thankyou so much for you advice and telling me a little about your own journey.

So sorry to hear this. Hope that your results come back with 0%CML. Please update me. Hope you are ok. Good luck Naugus!!!

Hi. I get it. It's so frustrating when you feel like you aren't getting the correct treatment. How are you doing now?

I have the exact same symptoms as you! It's weird because my oncologist mentioned that he never saw a patient that complained of severe bone pain (which I found extremely odd, in his 20 years professional experience), but then a few appointments later he said that it's common for severe bone pain?? Didn't really add up. 

I will definitely get hold of them. It's just tiring with everything else I'm going through (CML isn't my only illness). I will try the best I can to contact them soon. 

Thankyou so much for your advice. It's so much appreciated. I hope you are doing ok.

I also forgot to mention that I totally understand that I might need to be changed to a different TKI because the current medication (imatinib) failure COULD absolutely be the only reason that it's not working. The problem is that I have other issues that cause inflammation in my body. My oncologist should be investigating this as a potential cause of imatinib "failure" or lack of optimal level, because inflammation can cause the body to prioritise fighting against inflammation vs TKI absorption. The problem with this, is that no matter what TKI I am on, if inflammation is the cause of TKI being ineffective, then this could cause risk of blast phase crisis. I feel like the tests should be carried out to see if inflammation is the cause for the imatinib not being at optimal level, before he puts me on any other TKI. Imatinib seems the safest medication for me right now. Also, being able to take it safely and continuously, without gaps, should be the priority before changing medication, aswell. Some other TKI's have known side effects such as lung/liver risks, which is more dangerous for me personally. 

I do fully understand that my current medication might not be a match for me, but I need to be sure that the cause isn't inflammation related, because this could be detrimental to my health if I switch. Hope this helps.

Hi again D.A.N  and thank you for your reply.

There is no correct way to use the community….. you answer as you feel comfortable.

Unfortunately being your own advocate when dealing with not only the NHS but with their organisations has become the norm now…… 

Once we were introduced to my CNS a lot of the load was lifted…… my wife called her our mother hen as she took us under wing and guided us through some very challenging years….(See my story)

Between Sep 2013 and Oct 2015 I had over 750hrs chemo, 45 radiotherapy zaps and 2 Allogenic Stem Cell Transplants….. so our CNS guided us through the bumpy road.

We live up in the Highlands, in Inverness….. some of my treatments were done locally so our CNS was there for us….. we even had her private number.

But both my Stem Cell Transplants (my first one failed) were done down in Glasgow and this brought a different level of complication as we had to live down in Glasgow for 4 weeks for my first transplant then 7 weeks for my second but the hospital I was at (The Beatson) was great….. my wife even had a room across from the ward for most of the time and we put in a hotel for the first 3 weeks of my second transplant.

We did come to appreciate the hidden cost of having cancer as did about 25 round trips - 6000+ miles up and down to Glasgow….. there was some funding but not enough.

Recovery took a good 2 years so we were seeing our CNS a lot….. and thus was when she introduced us to our local Maggie's Centre…… these folks were amazing.

I was eventually asked to be part of a project my CNS was pioneering that eventually resulted in setting up posts across the Highland's that had dedicated patient support workers, working alongside CNSs from different departments helping to improve patient communication and support.

When battling through the storm you keep your head down and push through.

Hey D A.N,

I am doing mostly OK, thanks for asking.  The main thing for me at the moment is being messed about with getting my medication delivered. 

I agree that it is so frustrating and confusing to be told one thing at one time and then another thing another time. I have had that and still occasionally do now. It isn't really helpful when you are going through a lot.

I totally understand about how bad the fatigue can be.  It can wipe you out.

Take care of yourself.