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Leg Muscular and other limb problems

Hi all,

 

Unfortunately still there on the long and painful cml road.

Since my last post, I am still suffering from extreme pains in my legs, especially in the right one and in my right feet (arch).

My calves are constantly cramping at each effort, I am dealing with walking problems permanently.

I am completely fed up with this, my legs feel so sore that I want to stop sprycel.

Moreover I am suffering from body wide twitchings and I haven't seen such side effects on the notice, I would like to know if some of you suffer from this and would be gratefull to have some feedbacks.

I feel really stiff in both legs and despite stretching, walking, drinking tonic water, take tones of different medicines, my days are becoming more and more unbearable.

My onc doesn't understand, neither neuros or other specialists and I am lost.

 

Thanks in advance,

Frenchguy

Hi there.

I'm really sorry to hear you're not feeling so well at the moment. I can understand - I too get quite a lot of cramping pain in my lower legs, though it doesn't sound nearly as bad as you. A number of people here have had some success with magnesium creams or oils, but being honest that didn't help me. What has helped me is keeping plenty hydrated and stretching my calves at every opportunity. It helps manage things. I also spend quite a lot of time lying on my bed reading something, with my legs high up against the wall. I find that instantly helpful with achy legs.

I know those things won't fix the problems you're having, but maybe will help just a little?

In terms of the dasatinib / Sprycel and these symptoms - have you always had them whilst on this medication, or did it take a while to come on?

David.

Thanks David,

 

I have never been well since tki's therapy but I have never suffered from muscular problems in legs and muscle twitchings, it is the first time and I am suspecting other disease but neuros tell me I am "fine".

Maybe I am beginning a toxic reaction to sprycel, that is why I am wondering if 10 days of stopping could give an answer.

My onc and I were agree to reduce from half percent dosage for a week but there was no improvement, then stop 3 days and no improvement too. 

I have seen on sprycel notice that there is no mark in plasma of tki until 10 days... The thing is that I am looking for an answer that absolutely no doctor can give.

I was extremely focused on my pcr and results before, but now I even don't care about cml, only in my quality of life which is totally poor. 

I had very bad leg pain on imatinib, and we stopped it because of that. The doctor said it would take about 3 or 4 days to notice a difference, and that's exactly how long it took to disappear.

David.

Hi

 

I have been on both glivec and dasatanib - it was between 2005/7. I was taken off them due to intolerance. One of my many symptoms was pain in the feet. It was terrible, worst in the morning, in the soles of my feet. I literally could not walk in the morning, then it got better and then it got to the stage where I couldn't walk during the day. It was most peculiar. I don't remember seeing a neurologist for that. I also had terrible pins and needles everywhere and I did see the neuro for that. 

It was entirely due to the medication. I had a little 'holiday' and the pain went away very quickly. I can't remember how quickly though.

I went on to have a reduced intensity SCT as my sister was a match.

 

Let me know if I can help more. The pills did work really well for me; just too many side effects.

 

regards

Susan

Thanks very much for your reply, today we had a talk with my onc and I will have a break of dasatinib for 10 days. I am at a point that I don't really bother what will be the result on my pcr...

Are these problems due to side effects, really hope so now otherwise hope it is not another problem...?

How long did it take to see an improvement for you Susan?

 

Hi Francis

We have spoken over email about both our journeys. Your similar in age to me, similar time into diagnosis and have a had a similar journey to me. Did you have any of these issues prior to CML/therapy? Your issues seem to be lower limb based, my issues are neck, back all over and hips based.

Susan, could you give us a bit more detail on your reduced intensity SCT, how long it took to go through the process and where you are today, with regard to health, pain, and CML? I am personally discussing this and like you have sibling match in my brother.

Take care
John

Hi John,

 

Yes, in fact we have the "same" history, unfortunately.

Actually, and since more than 3 months I am in agony with extreme pains in legs, stiffness, tingling, numbness, in my legs and I must admit that my back pain are still there but really lower than in my legs.

I have seen more than 10 different doctors who don't understand my problems. It is my day first off tki today and I will wait for 9 more days to see but I am pretty sure something else more serious is beginning. What? I think it can be a neuromuscular problems called als, of course hope it is not but that is the worst option and all leads to this disease.

I have told my neuro of this possibility and the simple fact to say the word has upseted him. Doctors don't like that we express our fears in France, don't know if it is the same in other countries.

My main issues are : extreme stiffness, cramps, muscle twitchings (litlle spasms) everywhere, walking is aching so much, my day to day life is compromised and I could use a wheeling chair at this time.

So I am trying to stop dasatinib to see if there is not a toxic reaction, and "hope" it is the case...

 

 

Hi Francis.

Sorry to hear your still having the same troubles.

I hope being off Dasatinib helps you some. Please keeps us updated.

I understand how you could be worried about your current situation, especially when you continue to suffer problems.

I too have the twitches around muscles on top of the other issues. The twitches are not troublesome compared to the pain/weakness/stiffness. The twitches are just bizarre as they fire all over, arms, then jump to flanks, then my back... Like I say they don't bother me, just weird you have these too. They happen up to 10 times per day.

I had a nerve conduction study last year which came back clear, so haven't really pursued this further to date.

I think it can be hard to pin down specifics as a lot of symptoms can mimic patterns of alsorts of illnesses/or imbalances.

I hope things improve. Please let us know how you get on. Have your team discussed other treatment options/transplant moving forward?

John

Hi

Sorry to have taken a few days to reply.

My transplant was in 2007 so details are a bit hazy now but I do have a blog. 

The links to the blogs seem to have disappeared but here's the address https://www.caringbridge.org/visit/susanleigh

I had about 5 days of chemo and then the cells. It all went very well and I was only in hospital for 17 days in total - which is very short. I had no immediate side effects after, mouth problems are very common and I was fine. The PCR was negative. 

I was never 100% donor cells and I had DLI approx 7 months out.  My problems started 10 days after the DLI when I developed an acute onset inflammatory arthritis. My haematologist maintains there is/was no link but my rheumatologist thinks there may be. No one else has ever had that sort of reaction - reactions to DLI usually take months to manifest.

I was given high dose of steroids which negated the effect of the DLI. As far as we know, I remain with mixed chimerism. After a couple of years my CML went from negative to low positive, possibly due to one of the arthritis drugs (acts on the T cells) and there it has stayed. I am monitored regularly and may well need more DLI but they are being very cautious with me.

The arthritis remains an issue. I've had every drug in the book without much luck. I'm in the middle of a flare up at present. The arthritis is being called rheumatoid so that I can get access to the drugs but no one really knows what it is and why it appeared. I've lived with variable pain for 8 years. Maybe I would have got this anyway??

I'm happy to answer any more specific questions if you want.

Good luck with your decision. There's no easy answer to side effects, mine definitely went away fairly quickly when I stopped the pills. 

Susan

Hi Susan.

I am sorry to hear about your arthritis issues and ongoing pain. 8 years is a long time to have little relief from various medications.

Thanks very much for kindly directing me to your blog, which I will read on my journey to London at the weekend to see a consultant.

It is never good to be "not normal" when it comes to diagnosis from the medical world as it places a heap a lot of uncertainty on top of uncertainty! I had inflammation of joints approx 2 month into Imatinib, hot, swollen, itchy and unable to bear weight in knees. I was taken to A&E where the staff were fantastic and could see visibly something was wrong but my then consultant thought it was not significant when contacted. Imatinib was very potent for me, thankfully most people tolerate it well. It was only when I was transferred to another clinic did I get switched.

It is frustrating when you can have two different opinions from your Rheumatologist and Heamatoligist, it would seem very coincidental that you had an inflammatory reaction so soon to your dli and transplant, but I am no medical expert.

Take care of yourself and please keep us informed of how you get on. You have had a very tough time with transplant and then the rheumatological issues.

John

Hi John

 

Thanks for your reply.

 

Are you having a second opinion? Where? Good luck with the decision. It's not an easy one.

One of the other unexplained side effects I had with the drugs were these sort of hot flashes all over my body. Very peculiar. I also had stomach 'issues'.

Please let me know how you get on and if there are any more questions I'll be delighted to hel

Susan

Hi Susan

Sorry for the late response, it has been a manic few days as I have travelled from Newcastle to Hammersmith for their take on things and follow up. It really took it out of me, and shows how much things have changed from making the same journey in November.

I am have been poor both on and off treatment with glimpses of some OK days, but on the whole progressively worsening to the point I am now struggling to do the most basic of stuff for weakness, stiffness and pain. Bizarre.

London are speaking to my team up here before making plans for the next stages.

Thanks again, I promise I will have a look at your blog soon. Thanks again for your thoughts and information.

Take care and I will keep an eye out to see how you get on.

Kind regards,
John

Rooting for you, John. I so hope they get to the bottom of all this pain. Not much I can add but I'm sure there are many people out there reading of your experience and thinking of you,

Best

Chrissie

Hi all,

I come back on the thread, to give you some news which are exactly the same as before. John, I am really "interested" to know that you suffer from twitches too. I am actually twitching all over some days more than others, however recently I twitch in one special area : in the neck 24/7.

I have checked for my previous blood tests and I have found that my cpk were at 45 U/L last year and now they are at 92 U/L, more than twice than before even if it is in the norm.

So I am really asking myself about a muscular issue because my legs, my right arch feet are in excruciating pain at the point that doing basics things like walking become a struggle. I had 3 emg and all came back normal even if some rich tracks have been noticed.

It is never possible to ask what does it mean to neuros but I am afraid of something else, like als or long term TKI using. I have stopped dasatinib 3 days, and as I have not seen any improvement I retook it.

My next objective is to wait for my june pcr, then I will ask to stop 2 weeks because I hadn't the faith to stop more than 3 days, especially as I didn't see any improvement.   

I would be very grateful of over muscular, twitching, leg problems testimonies which last for months.

John, when you say you twitch 10 times a days, how long does it far, how many twitch, sorry for the silly question but these symptoms are so annoyings, especially with legs cramps and the arch of my feet horribly painfull, tingling and numbness.

Cheers all,

Francis

Hi Francis

Sorry for the late response, I haven't been great.

In response to your question, the twitches are intermittent, appear in different areas and are not troublesome. I have had them across face, neck, arms, back, flanks, and thighs, basically anywhere there's a muscle.

I wish you luck finding out what is causing your problem. Regarding being off treatment for 3 days, I have been off for 3 month at a time and my PCR has went up to 5% and after being back on treatment (Bosutinb 100mg) for 2 month it was still 5%. If I'm totally honest I don't really care about the numbers and have no anxiety on that front, I've responded before and will probably respond again, based on the evidence in the past. For me it is losing the ability to function that worries me, as I am now struggling to get up and down the stairs for trembling, weakness and pain.

I am now off work again and walking my legs feel like lead, perhaps steroids, I don't know. It has been mentioned that I could be displaying a seronegative arthritis, I am currently trying to get information on this.

I am waiting to hear back from my Consultant on the next stages, but that is being held up by another consultant not responding to my primary consultant or myself to date, despite being told it would happen last week. It's frustrating not underatanding what is happenig, so I understand your concerns.

Did your consultant recommend being free from Dasatinib for more than 3 days? If so, why did you restart, I have heard others on here say they noticed a difference over different periods of time.

Take care.
John

PS Thanks Chrissie for your kind words as always. Hope you are well.

Thanks John,

Unfortunately, our cases seem to be so similar... With the frustration come the fear of being mis-diagnosed from long term tki using or something else.

Walking is my main issue actually, I still suffer from the back and neck at the level of before but it is nothing compared to the pain in both legs, calves and in my right feet.

I will have my onc tomorrow by phone, I will do my 3 months pcr, wait for the results and if it has not shown a big rise, then I will definitely consider being off tki during 2 weeks, even if I take a risk, my day to day life isn't acceptable, it is miserable.

For those who have stopped tki, do you think that being off tki during more than 2 weeks could show an improvement, I know it is a hard question but at this time I am in a survival mind and not in a livable mind, there is a huge difference and my objective is to live with less pain. I have seen that being off tki during 3/4 would have shown an improvement so I am confused.

Medicines like morphine (quite low dose), ibuprofene, cymbalta, neurontin, lyrica, laroxyl have been tested without any success on a quite long basis (about two months on each medication) so I am feeling really lost.

My state of mind is to go out of this circle, I am determinated to fight and not be despressed or something like that, it is my main difficulty with doctors who want to put the psychosomatic before the somatic, exactly the same state of mind when I was complaining of my pains before my diagnosis.

I know they can't do everything but I know they can do the necessary to find something and there is such a gap between their thinkings and my sufferings that I do personnaly think that I am going in front of a big problem in a few months. 

Thanks for any reply,

Francis