You are here

Treatment or not?

Hi all.

Happy new year, hope this one is a healthy one for all members.

I just want to share my experience and ask for other CML'ers opinions and advice please.

I was diagnosed in June 2013.

Since then I have had ongoing issues with joint pain, muscle knots and other side effects to initially Imatinib, before being switched to Nilotinib. My PCR at last count was 0.00 so because of the issues, this time mainly neck, shoulder and back pain radiaiting to the left arm with weakness, my Consultant gave me a treatment break. He is convinced my treatment is the cause, I have now been off Nilotinib since end of November, at first things eased somewhat but now its all back again.

I have recently had an MRI in December and told I have very mild disc bulging in lower cervical spine... Previous spinal MRI's as recently as April 2013 were normal. My Consultants in Haematology and Rheumatology are convinced that this issue is not the cause of my pain. I am now due to re start treatment with either a switch or reduced dose... However I am still of the opinion that my real issue is a muscularskeletal one, with the CML treatment only heightening the pain.

I am only 35, in agony daily and am starting to feel depressed that I am doing well with the CML but am living daily in pain from soreness to agony. My son is 14 month old and I'm struggling with work to support my family. I also got told I have Arthritis in my right patellafemoral joint last year. I just feel like I'm deterioting quickly.

Whenever I tell the docs my worries I get told everything is fine for someone my age. I can't understand this as before diagnosis I was super fit. I am now on Pregabalin x 2 daily, Lodine daily, and Codeine throughout the day... This is before I get put back on treatment! I didn't take a pill 2 year ago.

Is my treatment and the CML itself masking everything else? Everything seems to be laid at the door of the treatment whenever I mention any issues to different docs.

I wonder if anyone else has had this kind of issue?

Surely my treatment can't be the cause if I've been off treatment for nearly 2 month?

Can the treatment stay with you that long?

If I have even a mild disc bulge and am experiencing issues like the neck, arm and back pain am I wrong for believing the real issue is this? (It's all like a trapped nerve and been going on gradually since May 2014. Two Consultants have said my pain can't be from the area flagged on the MRI and to be happy everything is fine)

Has anyone else experienced pain like this on a treatment holiday?

Sorry for all the questions but I will be back in Clinic this Thursday and I am trying to prepare for what will be suggested treatment wise. I also don't want an underlying issue to escalate while everyone believes its my treatment.

Thanks to you all, and again apologies for so many questions, just the pain and loneliness is starting to make me feel really depressed.

Thanks.
John

By the sounds of it seems that you have been on for TKI a while. I am very sorry to hear that you are struggling with the pains and aches.I have been on Nilotinib for nearly three months. It's not a nice experience at all but I think you need to give Nilotonib a chance to do its job. I am on Nilotinib and funny enough I experience the side effects one at a time. Don't know if it is psychological but so far I have experienced, headache, constipation, funny feeling in my legs and so far they are gone. Now its aches and pains in my tummy so I'm just taking each day as it comes and not giving these side effects a lot of thought. I have also noticed that I need to watch my diet reducing caffeine drinks, being around people so that I do not over think about CML and wrapping up warm in the cold really helps me. Also I have a hot water bottle and some heat pads that I use for muscular aches and pains. My tummy is much much better at this time. I still feel nauseous but I drink lemon tea which help me a lot.I hope this helps you.

Onfire

John, I am sorry you are still suffering so badly especially as you have tried stopping the drug for 2 months and you still have the same level of pain!

...'I am now on Pregabalin x 2 daily, Lodine daily, and Codeine throughout the day.'...

If you look at the following
http://www.drugs.com/cdi/pregabalin.html
you will see that pregabalin has a warning of interaction with codeine
'...Pregabalin is an anticonvulsant and neuropathic pain agent. Exactly how pregabalin works is not known. It is thought to bind to certain areas in the brain that help reduce seizures, nerve pain, and anxiety....'

Lodine is in a group of drugs called nonsteroidal anti-inflammatory drugs (NSAIDs). -works by reducing hormones that cause inflammation and pain in the body -used to relieve the inflammation, swelling, stiffness, and joint pain of osteoarthritis (the most common form of arthritis) and rheumatoid arthritis. http://www.drugs.com/lodine.html -
It also interacts with both dasatinib and ponatinib (not sure of nilotinib as it is not listed) but best to be aware of this just in case you change from nilotinib to one of these.

I do not think you are going to get much further with this problem unless you try to find some kind of complimentary therapy that you are comfortable with. Certainly something like cranial osteopathy might help the back/muscle pain you have.
http://www.cranial.org.uk/page12.html

It could be- and this is just my guess- that you have been under such stress since diagnosis that your adrenal glands are struggling to keep you going. You could ask to try a course of steroid treatment-
Corticosteroids mimic the effects of hormones your body produces naturally in your adrenal glands, which sit on top of your kidneys.
If that helps you could then try to rebuild your exhausted adrenals with more natural supplementations
- see here for more info on this.
http://www.adrenalfatigue.org/could-I-be-experiencing-adrenal-fatigue

I hope some of this helps,

Sandy

I read your message days ago, and I've been thinking about it every day since - you might not believe that, but it's really true. I've been trying to formulate a good response in my head, but so far have failed and I thought that by now I really should say what vague thoughts I had. Sorry that it's not thought through as much as I'd like.

I started on imatinib in late 2012. I had a terrible time on it - vicious (grade 4 according to my doctor) pains through my bones and nerves, particularly in my legs. It felt like fire suddenly striking through, and I couldn't move when it happened. The low point was in an airport seeing family and I couldn't get to the gate - I had to get a wheel chair to take me there. That was pretty shit. I was on a load of codeine and wazzed out most of the day.

Why am I telling you this? Well, I guess it's because over time I've managed to get rid of most, but not all of these problems. And I hope you can too. I'm the same age as you, diagnosed 6 months ahead - I am definitely not as strong as I used to be. I feel my muscles and joints are much older than they were before. I'm in for an x-ray on my ankles soon because my GP is concerned I have early arthritis in them. They hurt, dull aches all the time and they get worse with walking. It's not like I'm unfit - I'm 175cm and 68kg.

BUT, for me the big turning point was switching form imatinib to dasatinib. It completely took away my bone and nerve pain. I still get cramps - can't hand-write more than 5 or 6 words without a cramp - but it's not a big deal. The big stuff is mainly gone. I still get pain here and there, the ankles are still troublesome but all-in-all it's OK.

I know this doesn't quite tally with your treatment holiday experience, but I really empathise with your suffering. For the more generalised body cramps I try to get a massage every now and then, and really find it helpful. I'm not one for homeopathic or 'alternative' remedies, but anything is worth a try and sometimes weird things work for people. I've found massage relaxing and helpful.

When I switched from imiatinib to dasatinib I had to take a break from all treatment and found big changes in my body. Some pains I had went quickly. Others stayed. You can't blame everyhing on the TKI.I wonder if you could suffer withdrawal symptoms from a TKI somehow? Is it worth considering changing TKI to something else? Have you spoken about that with your doctor?

The only thing I can advise you is to not settle. Like me, you're young(ish!). You deserve to feel well, and if what you're taking is making you feel unwell you, and your doctor have a duty to check it out and try to make it better. Try a different TKI, try every alternative, try everything you and your doctor can think of to make you feel as well as you can because at our age, with plenty of time ahead of us you shouldn't settle for feeling shit all the time. I've got my clinic in a couple of weeks and I am planning on bringing up my ankle pain - it's not major in the scheme of things and I could live with it, but I owe it to myself to at least try my best to deal with it.

Lastly, you asked if the treatment could "stay with you that long" - it's my understanding that the half-life of most TKIs means it would 'wash' out of you in about 10 days-ish. But of course if a TKI did damage to you somehow, that doesn't mean that any damage was reversed in that time, just that the TKI is out of your bloodstream by then.

Anyway, I hope you feel better soon. I have really been thinking about you over the last few days - your problems really struck a chord. If you ever want someone to talk to who's your age and knows some of what you're dealing with, just shout my way. I mean it.

David.

Hi all.

I just wanted to first of all thank you Onfire, Sandy and David for being so kind to offer your two cents and most of all being compassionate about my current predicament.

I will give you guys an update following clinic yesterday with my Consultant in Newcastle. First of all my PCR after approx 8 weeks treatment free was 0.05 up from 0.00 on starting a treatment holiday. We discussed my pain, how it is noticeably better regarding general pain in joints/muscles and the fatigue... However the pain in my neck, back and shoulder, sometime arm was no different. It was hoped by my Consultant and ourselves that by stopping treatment for so long all the pain would dissipate and I would be looking at another TKI. I can't help thinking like any prolonged medication taking it could have knock on effects or cause irreversible issues with your body, even a GP suggested this sometime back... I am however very grateful at the advance in CML treatment.

It is now the belief of my Consultant that although the Nilotinib and firstly Imatinib does contribute to generalised symptoms it would appear something else maybe going on. I am now being referred to a Neurologist which I am quite anxious about, first a Heamatologist, then Rheumatologist and now a Neurologist. My Heamatologist agrees it is not normal to have daily pain at 35. My rheumatologist is of the opinion my very mild disc bulge is not the cause of my localised pain in my upper left torso. My MRI is completely normal for my age the rheumatologist believes and when asked am I showing signs of degeneration at a pace quicker than the rest of the population I was told absolutely not. So I am now still off treatment, another PCR was taken and I am back in 4 weeks for a chat and possible plan.

Thanks for the links Sandy, I will try anything I financially can and will not cause me any more trouble. The adrenal gland theory really caught my wife's attention, she really thinks me stressing about mobility, being a healthy Dad, then work, then keeping us in a house... You see the pattern. Maybe everything has happened very quickly, CML diagnosis, its treatment, Pattelafemoral Arthritis leading to work insecurity, Now my Neck issue. I will investigate adrenal glands in more detail.

David, I am so grateful for your response, I will pm you in more detail.

Again On fire, thanks for your thoughts.

I will see what happens in the coming months and hopefully things may start to settle and the Neurological meeting and possible tests are all normal and positive!

Take care guys.

John

hi, John,
I haven't been on the forum for a little while. At least not like what it used to be when
I was first dx 4 months ago, like you I am also considered as young (37). I just want to say that I totally agree with you that I think TKI (currently on Imatinib) does cause problems with joint although we can't live without it.
I am feeling cracking sound in the joint when moving around which never happened before TKI treatment (it started one months after treatment begins). And I feel a bit hard to bend down to get things on the floor. With what you experienced and others story, there are quite a few of us having similar problems. I am also a bit worried if the condition eventually gets worse and become irreversible. I wonder if it is caused by uric acid building up in the joints although allopurinal is taken daily. Have you checked uric acid level lately? High uric acid level certainly causes gout and arthritis. The symptons are like what you described. Maybe a vege/fruit rich diet can help rather than the protein rich one. I am also anxiously waiting for results of the European trial of stopping TKI hoping that one day I can stop taking the drug. Anyway I hope my thoughts can help a little somehow.
cheers,
William

Hi William.

Thanks for posting your issues. Hope everything is going well with your treatment, joint issues aside.

I haven't, as far as I am aware, had a uric acid reading, although this maybe done automatically when I get my bloods screened in clinic... I will raise this in 3 weeks when I am back in clinic.

What your describing has been identical to myself. I started to feel aching and swelling in my knee joint approximately one month on Imatinib.

I would really like to hear other fellow CML'ers who are considered young, or even old, who were fit on diagnosis, but rapidly felt issues with joints.

I just feel when I speak to some Consultants/Doctors its all just 'we all get old'... There's natural wear and tear with age/activity and non normal changes in my eyes. I just wish I was taking seriously as this is my life, my families life and how they exist, financially and emotionally.

I must clarify that I am greatly appreciative of the a drug option, the work that has gone into the development and all those early trialists who were the guinea pigs for where we are today.

My point is, if there is an issue of potential irreversible effects that are either indirectly or directly linked then surely we need to be aware and most importantly listened to and monitored... Listened to probably the most important. Everything seems to be about PCR numbers at times and that seems to be the measure of our wellbeing. I really don't know where I am headed physically, which really concerns me as my son is only 14 months.

Thanks again to all the people who have replied, and thanks to all of you who have taken the time to read my post.

John

Hi John,

I don't know where you live but, if you can find someone like this locally, I would strongly recommend a look.
https://www.facebook.com/livelifethrive

I haven't experienced anything like you but I reluctantly went to this guy and, with some very simple and painless treatment, he straightened my back out. There was no manipulation, just very gentle touching of various parts of the spine. While I was waiting in reception, a lady came out of the treatment room looking very shocked. She said that she was without pain for the first time in 20 years.

If you are interested, I am sure that Thrive could recommend someone in your area.

I have no connection with Thrive except for being a very satisfied patient.