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Any opinions greatly appreciated.

Hi.

Looking for other peoples' opinions/experiences if possible.

I have been on Dasatinib now for approx 7 weeks, and either I'm having a hard time with it, or unlucky with injuries. I'm not sure which.

After a week on Dasatinib, I woke up, felt stiff, stretched side to side, then experienced intense hip pain (similar to the pain I experienced on Imatinib) and bad lower back pain which has not resolved. Three days ago, I turned to look out from a car window, felt a slight stretch in my neck, then carried on as normal. The next day, slowly started to develop neck pain like cramps. Now I have pain in my neck, shoulder, arm, lower back and hip. Either I am super unlucky with injuries as I seem to have had joint pain over the past 2 year in various areas, this TKI is not agreeing with me, or something else is a miss? Does this sound similar to anyone or does anyone have any thoughts or can offer any help?

I have been suffering with pain since starting TKI therapy 2 year ago at 33 - super fit, no previous health issues.

Now 2 years on, I have hit a wall. I have been on 400mg Imatinib, 150mg daily Nilotinib and now 20mg Dasatinib. I am really struggling with basic stuff, bending down, looking down, and sitting comfortably.

Has anyone else experienced;

Stiffening up?

Injuring easily?

Spine pain?

Joints popping and cracking?

Small bleeds that go on for ages?

I had MRIs of my spine which were normal last year, except a very mild disc bulge of my lower cervical spine (but reassured this would not be symptomatic by various medical experts).

My GP told me he doesn't know what is going on and it is the end of the road. My consultant has told me to do what I want regarding treatment, skip days, take 4 day breaks, no advice on pain relief. GP prescribes all sorts of pills, consultant doesn't discuss when I talk about what I am given.

I've spoken to a few independent nurses as I don't have a specialist nurse myself and they think it's strange I am deciding on my treatment and odd that I haven't had a bone marrow aspiration, ever.

Does anyone else think it would be wise to get another MRI a year on to compare and check nothing is going on? My pcr has gone up and down recently because of treatment breaks, from 0.00% up to 7% and the last one a month ago, 1.6%. My wife has the opinion that because the treatment is working hard on the disease, deep down and that it's a new drug for my body to get used to, that these pains might settle once my pcr is in a better place and I'm a little more used to the Dasatinib. However I'm scared to move without hurting myself.

I'm desperate to get better and get help. Any thoughts of what anyone would do in my shoes or experiences that are similar (hopefully ones where the pain all went away, ha ha) would be really really really appreciated.

Thanks very much.

Hi

I'm so sorry to hear about your pain and wanted to reply as no one else has done so yet. I cannot speak from personal experience as I am one of the lucky ones with little problem with TKIs. However, two things came to mind while reading your post

1) I am extremely surprised that you have never had a bone marrow biopsy or aspirate as this forms an important part of diagnosis. Where are you being treated?

2) Have you found the Facebook group started by Nigel Deekes? (I'm sure there is a link on this site. I don't do FB but have found this site) Many people there are having similar problems to yours and are trying different things to alleviate the pain. Have you tried the magnesium spray that Sandy frequently recommends? If you go back to past posts on this site you should find the name of the company that sells the purest kind.

And finally, your wife may well be right. It sometimes helps ( but not with major pain) to see side effects as proof the stuff is doing its job and is easier to accept discomfort.

I do so hope it gets easier for you,
best wishes, in my thoughts,
Chrissie

Hi Chrissie.

Many thanks for taking time out to reply to my post, even though you are not in the same position. It helps just to hear opinions on treatment and the path other people have had.

In response to your points. I am being looked at Newcastle, which is a centre for excellence I believe. You are one of a number people who seem very surprised that I have only ever had PCR testing and never a biopsy. I have asked but have been reassured a PCR is sufficient? Hopefully I may get some more feedback before I attend clinic tomorrow, I will be however bringing this up again.

Your second point regarding Facebook. I have been pointed to it, and have met Nigel in person last year in Newcastle, however like you, I don't do Facebook. I may have to change my stance on this on the basis of being proactive. Maybe I will have more chance of seeing people of a similar age with CML. I am just quite a shy person.

I have been using Ancient Minerals magnesium spray now for approx 2 weeks, I haven't seen any drastic change but Sandy said it can take at least this time to start to lift levels. I will ask in clinic what my current levels are.

I do hope this is just the treatment working and is something that will rectify or improve to better place. Daily pain is quite wearing, well very wearing.

You take care Chrissie and thanks again for taking time out your day to reply.

John

Hi John,

re: pcr vs bmb. I think the current thinking is that it is not worth doing a bmb unless there is a good reason. PCR from peripheral blood has proven to be a less invasive way of understanding or 'seeing' what is going on in the marrow.

You may find you get a response from the facebook groups on finding someone who is suffering the same level of pain as you- it may be worth a try but it really depends on what kind of interaction you are comfortable with.
I have done a little bit of research on TKIs and common side effects and it seems that you are not alone- severe joint pain is a reported side effect for around 20%..... this was with dasatinib, but I am sure it is the same with others. You need to convince someone that you need some kind of resolution. I still think that magnesium levels are very low in most of us who do not supplement with this mineral. You could also try zinc (30mg a day) and high dose B Complex (50mg x2) as well as selenium at 200mg per day. You might also try researching on adrenal exhaustion which can cause havoc in all sorts of ways... see link here from another post.....

http://blog.adrenalfatigue.org/

Dr. Wilsons products are available in the UK through Nutri-Link Ltd.
http://www.nutri-linkltd.co.uk/

Heat packs on your joints and muscles can also help as well as acupuncture etc etc... but I am sure you're aware of all that too but do look into adrenals and the effects that stress has on them.

I hope you can find a way to deal with this... is there a chance that you could try bosutinib?

Best as always,
Sandy

Hi Sandy,

Thanks, as always, for getting back to me. I'm really at my wit's end with the pain, as you can probably tell. I'm scared to move for fear of making the pain worse or injuring myself. The pain feels more severe in specific areas such as my neck, shoulders and back, but I now also have a generalised pain which can be best described as how you feel with flu, magnified by ten. It seems odd to me that only 20mg of Dasatinib daily could have this effect on me.

I'll look into these links and follow your guidance on supplements. Regarding Bosutinib, I was told this could be an option, but I'd probably have to give Dasatinib a go for six months at least as my consultant didn't want me to rattle through TKIs. My biggest concern is that this is not the treatment, but it's not getting looked at because it's being branded as side effects, as debilitating as they are. I'm off now to spray on my magnesium. I already take cod liver oil, b12 and glucosamine.

Take care and I hope you and your husband are well, John.

Oh that old chestnut! Absolutely ditto with your symptoms as many of us are and in exactly the same places. Sandy's advice is good and I followed all of her advice, but still consumed a great deal of 30mg Co-Codamol..quite unpleasant and didn't do a lot for the pain either. An escalation in side effects led my GP to refer me to Macmillan, which I felt awful about, feeling that these people have far more important stuff to do than sort out my side effects. However, I agreed to see her and it was the best thing I could have done. She came to see me and we had a good chat. She then tentatively broached the subject of the Well Being services on offer at my local Hospice...more panic going on inside me! So, I went there for a day a week for five weeks and we covered diet, complementary therapies, adjustment to our new situations etc. I was then offered a five week course of Reflexology, all completely free. All of this led me to being far more focussed and relaxed. In my new found relaxed state I then opened up to the therapist about the degree of pain and she persuaded me to see the Hospice Doctor. I had two wonderful appointments; it was just so good talking to someone who understood how completely debilitating the degree of pain had become. She persuaded me to try Morphine which I did with much trepidation. However, surprise, surprise, a slow release twice daily tablet which is proving to be really effective and guess what, I don't even notice that I've had it, nothing like life on Co-codamol.
I've written as much as I have, because I truly feel that for people who are really struggling with the side effects of their therapy, that these people from Macmillan, right through the Hospice set-up have got my life back on track for me.
If you want and feel able to go this route, ask your GP for a Macmillan referral and take it from there. Best thing I ever did.
By the way, I am on 100mg Dasatnib.
Vickie

Interesting!

First of all many thanks for taking the time to get in touch.

I say interesting because whenever I raise these issues in clinic I am met with raised eyebrows and have even been told they see nobody like me!... Which in turn grows more anxiety.

I am embarresed to say that recently I approached a blood cancer charity locally to see if they encountered someone like me. They then referred me to a nurse who has then referred me to Macmillan, I felt exactly the same. I am in the early days of that now.

When you say Ditto, did you have similar pain areas and severity presenting?

Any info would be massively appreciated.

Please also if you want to PM me, I am sure Sandy will pass my details.

Thanks again.
John