Ibrutinib and severe foot cramps

[cartwheels]

Hi started treatment on Wednesday and after day 3 woke with very painfull right foot could not even walk to the bathroom and bit better this morning but still painfull have read this is probably muscle cramps wanted to know could I take a magnesium citrate supplement to help whilst on ibrutinin and what strength cheers

[KAS8]

I was told to take paracetamol and codeine. I was also on allopurinol too to break down the uric acid. Mine went within 3 - 4 days. X

[KAS8]

Ps do

Callet the hospital before you take anything BTW!!

[cartwheels in reply to KAS8]

Will do thanks for replying uric acid that's gout and I have not touched a glass of port for weeks lol

[KAS8]

Don't you have them in your meds pack??? I was supplied them with the ibruitinib plus 2 other sort.

[cartwheels]

No I got no Meds pack typical NHS balls up lol. Was sent to the pharmacy they said have a coffee whilst they get it ready. Went back told me they had sent it to the cancer ward ad they wanted to speak to me. Got there they knew nothing told me to wait then ten minutes later a receptionist gave me the drugs and told me to go .

[lartington in reply to cartwheels]

I thought you might be interested to know that Ibrutinib in the UK costs £5150 per 1 month treatment , my husband has been on it three years, we are extremely grateful that he was selected for a trial, perhaps try and overlook the negatives and share with us the positives of this 'wonder' drug. The NHS work under a tremendous amount of pressure, pleasing everybody all the time must be mission impossible.

[cartwheels in reply to lartington]

I'm sorry it's a very good drug and I'm glad I'm on it. But high ĺlghting side effects is helpful for both patients and the drug companies. I'm not complaining but as I'm new to the drug it's good to hear from previous patients who have experienced the drug to see how they handled the side effects

[sparkler in reply to lartington]

Hi lartington

It's not always possible to 'overlook the negatives' when you're the person experiencing them, no matter how good, or expensive the drug treatment might be.

Everyone has the right to express all their feelings here and it's important for that to be respected.

The sharing of information, especially any side effects from treatments is very useful and nobody should be made to feel they can't talk about them or look for help in coping with them.

I hope your husband continues to do well on Ibru.

sparkler x

[lartington in reply to sparkler]

Hi Sparkler, you took me in quite the wrong direction, for which I apologise. I totally understand the purpose of this forum , I have been using it for many years on behalf of my husband who has too many problems to begin talking about just now. BUT, I do ruffle my feathers a little bit when we CAN get upset at the downfalls of members of the NHS who, after all, spend their every working day trying to get things right for patients. For example obtaining Ibrutinib is not a speedy process, and I have found one has to accept that situation for what it is. Careful checks are always made and that might be from department to department. I mention the enormous cost of this medication only to demonstrate how fortunate the few who have it are, nothing else. I do however feel that getting more help and information from the specialist nurses is always a very good starting point, also many people on Ibrutinib also take a lot of other medication for other issues and there can sometimes be a conflict resulting in symptoms which we all tend to blame on Ibrutinib. I have said enough. best wishes medically and I hope you will soon feel better.

[KAS8]

That is not good! I have allopurinol for uric acid 1 a day, acyclovir 2 a day, co-trimoxazole 2 every Monday, Wednesday and Friday and metoclopramide for nausea as and when. Do you just have Ibruitinib? I also have a dedicated emergency number to call with any problems. I know you are with another hospital but do you want their number??

[cartwheels]

Ibrutinib only and not gave me nothing

[Dddinah]

I've been on ibrutinib for about four weeks and I've had foot cramps. I asked my oncologist about potassium or magnesium supplements. She said I could take them if I wanted to.

[cartwheels in reply to Dddinah]

Thanks stated taking 360 mg magnesium citrate last night and cramps have eased slightly

[lartington in reply to Dddinah]

quinine tablets on prescription and one banana (potassium) per day, plus lots of fluid every single day..... give it a whirl!

[cartwheels in reply to lartington]

Well been drinking Indian tonic water and taking magnesium 360 mg and most of my cramps have gone

[lartington in reply to cartwheels]

that is good news, if it gets worse again you can always try the old banana trick and prescription quinine. Ibrutinib is certainly a wonder drug but it does have issues for some people. My husband has been on and off it 11 times due to surgical procedures and he always finds getting back onto it very hard. Flu like for a couple of weeks, but then hey presto and off ogain!! keep up the fluids!

[Cllcanada Top Poster CURE Hero in reply to lartington]

I would be cautious recommending quinine, it can effect platelet function...generally it is not recommended in CLL , but your mileage may very...

Always discuss this with your CLL soecialists, aren't generally up to speed on these matters.

Some patients on Imbruvica (ibrutinib) are prone to bleeding due to collegen disfunction due to the drug, and quinine isn't a very good idea... even in tonic water.

This has been discussed over the years, a search will bring up many threads on this topic...

healthunlocked.com/cllsuppo....

~chris

[cartwheels in reply to Cllcanada]

Thanks very much for the advice all taken on board

[cartwheels in reply to Cllcanada]

One other thing most of the cramps have gone but got painfull I can live with that just hurts when bending etc is there anything you know of that might help. Other then that ibrutinin is working well already my nodes are shrinking

Thanks

[SunnyCA]

Yes severe cramps part of deal with Ibrutinib. I'm also on allupurinol but still had a lot of cramping and joint pain. Mine did get better after about 6 months (on my 9th month now) but they do occasionally return but not as bad. I did supplement with potassium, magnesium, calcium and D. Also, I got a parafin wax bath and would dip my feet and sit with the wax on my feet for a few minutes - also buy the plastic liners to put over your feet like at the spa. This made a big difference. Also, I roll both feet on a lacrosse rubber ball to break up the tissue - and a theraband to exercise and strengthen the foot because I felt the cramping was making my feet tight. Tight feet impact everything so be sure to stretch them. Hang in there it gets better!

[kimiD]

Cartwheels, I have been on ibrutinib for 7 months and still experience foot cramping occasionally. I was also prescribed acyclovir and allopurinol (which was stopped after WBC began to come down and I was no longer at risk of tumorlysis).

Hydration is the key for me, at least 80-90 oz of water every day. I did start taking turmeric nut haven't noticed any difference yet.

The cramping can be extremely uncomfortable, so I hope you are able to find some relief.

Kim

[cartwheels in reply to kimiD]

Thanks so much for your reply Kim. I'm glad to report the cramps which were so bad a few days ago have eased of and I'm starting to feel human again so much so I'm thinking of returning to work tomorrow. Started taking magnesium 360 mg tablets and drinking Indian tonic water don't know if it is that or that my body has got used to ibrutinin but ether way I'm so much better still the odd painfull joint but hey I can live with that

[Cllcanada Top Poster CURE Hero]

Increase you hydration levels..very important to stay very well hydrated... litres of water a day...

My brief experience with ibrutinib wasn't great... any heart issues see your CLL specialist immediately, monitor your stools for bleeding...

~chris

[romarin]

I have recorded my own progress with Ibrutinib here. Eventually I had to stop due to increasingly severe pain. You might want to look at my posts.

[profrich in reply to romarin]

What did you do for treatment after you stopped. I think I may have to stop also.

Thanks,

Rich

[lartington]

Well, I don't know how to answer that..... except to say I am so very sorry for you. Life can be a bummer sometimes can't it?? I do hope you are more comfortable with the care you are receiving now?? The trouble with cll is that it is so complicated isn't it??

My husband is 78, he has had cll about 22 years, it is in the last 11 years it has presented problems. We decided in 2006 to make a special effort and seek a consultant who specialised in cll at a teaching hospital. At the time my husband was in a wheelchair and could barely walk due to acute breathlesness. Our new 'guru' had several tests carried out and quickly informed us that my husband had a very rare lung disease pulmonary hypertension, within days he was admitted to the Freeman hospital in Newcastle for further tests and then surgery at Papworth to remove pulmonary clots from both lungs. This procedure meant he had to take warfarin ...... his cll was progressing and for 3.5 years we travelled a round trip of 154 miles every 28 days for an ivig infusion. He has p17 deletion which meant no chemo was possible. so the only option was a high dose of prednisilone, which stablised his cll but presented four fractured vertebrae, which has really completely changed his lifestyle.

We decided to move nearer to the 'guru' hospital and sold up and moved some 55 miles to be nearer. since doing that he has moved his treatment even nearer to our home and the start of Ibutrinib. Unfortunately that also meant no more warfarin, so a different anticoagulant was given which after 1 year presented further embolisims and furred pulmonary arteries, more treatment at Freeman hospital and now on a different injected anticoagulant. He also developed haemophylus influenza which is treated by nebulised twice daily antibiotics, this is ongoing.

During the last 11 years he has had surgery 11 times for various problems, skin cancers, hernias, perianal complex fistulas (4 times in 12 months) , not forgetting pneumonia, and sepsis five times. I have given you this picture simply to demonstrate the hospital experiences he has endured, many different hospitals, we have spent hundreds of hours in waiting rooms and hospitals.I won't pretend they have all been perfect, but I do say hand on heart, my husband has never had the problem you have experienced, we remain confident in the care team and grateful to everybody who has helped him.We made an excellent decision to move to a village where people have made us feel very welcome.

I, like many spouses of cllers have become a carer for a long time full-time. I have a notebook with dates, phone numbers, dates of scans, etc., etc., I always carry an up to date resume of medical history, current medication, dosage etc., just in case. my Yorkshire pedigree emerges if I am not happy with anything, like being placed in a ward next to somebody with a hacking cough, enough........

- - - - - - -

I hesitate to ask if you ever considered taking further steps regarding your negligent nurse?

If you felt so inclined you could transfer your cll care to a different hospital, we did not find this a difficult thing to do, however, you might have to be prepared to do a lot of travelling.

I do hope you find some sollace from your dilema.

very best wishes to you Sparkler

[lartington]

Hello, well, what a long and protracted business this has been for you. How dreadful, but thankfully you have some good support and backing from colleagues. I think you are an unspoken hero and amazing that you are continuing your fight to benefit other people.

Is your GURO by any chance Prof Peter Hillmen at St.James in Leeds? he is a big name in drug trials on new treatments.

I know what you mean about trust...... having been let down by docs we ALWAYS ask one of our fav men for a recommendation in whichever field we are looking.

Life can be a struggle for some people, some people sail through life believing everything they are told/not told , we have learned to question everything.....

keep up the struggle, don't let the demons get you down!!

would you let us know how you get on at your forthcoming meeting with MHRA?

best wishes.

[sparkler in reply to lartington]

Thanks, though I'm no hero; just hate injustice and doctors lacking in knowledge, who demean their patients, then leave them in pain.

I suddenly noticed that this post wasn't hidden and so quickly deleted my previous comments (I could've edited but it would have been a complete rewrite and I've no energy for that) but you've read them and as I was replying to you, hope you can remember them and understand my reasons.

No my Spec isn't Prof Hillman, though I won't disclose for obvious reasons, as he's brilliant, along with all but one in the dept.

I'll let you know if there's anything to report, probably in a private message.

In the meantime, thanks for taking the time to respond; much appreciated.

You and your husband take good care. Be well

sparkler x

[lartington in reply to sparkler]

I don't know how to reply privately..... you might tell me........

you might be interested to look uo Prof Peter Hillmen he works out of St.James Leeds, he is often shown in short videos at cll conferences around the world.

Sparkler is such a cheery upbeat name!!

I look forward to hearing your update on next week's meting.

[sparkler in reply to lartington]

Hi lartington

I'm happy to explain about private messaging, though a bit later, as I just got in after being out all afternoon and am bushed!

I know of Prof Hillmen thanks; I went to quite a few CLL Science days in London with the CLLSA (they're for the Health Professionals, rather than for patients and I sometimes struggled to follow) and so have heard many of the eminent UK CLL specialists and researchers present recent papers there, plus some from overseas....mine was amongst them too I used to meet up with Tricia Gardom there and I do miss her - still can hardly believe she's gone.

I'll be back in touch and I am really sorry for deleting those comments but I didn't want them showing up on google etc.,

I try to remain upbeat but don't always live up to my name; only human! Lol

Be well

sparkler x

[romarin]

2 1/2 years later due soon for more treatment. But I lasted that long! Not sure what options available as yet other than FCR. I will post properly when I know more. Good wishes to you.