I'm tired....

[UKfulloflife]

So... started Ibrutinib at the beginning January as a 2nd line treatment. Note - this is a 'rant or rather - feeling sorry for myself post'!! Had a horrendous throat infection almost immediately which turned out not to be related to the pills, but took a few weeks to get over. Then the tiredness set in. A day trip to the city left me feeling exhausted to the point of taking to my bed for virtually the rest of the week. NOW however.... the sores in my mouth and - worse still - on my tongue. The pain is indescribable. The pain relief I have been given doesn't touch it. I'm having difficulty eating and am losing weight as a result. To top it all - I've had a persistent cough for the last few weeks, and have now lost my voice completely. The GP I saw today (not my normal totally wonderful GP, who is on holiday this week) told me to try not to cough and or to attempt to talk and reckoned it could take 3 - 4 weeks for my voice to come back. As I said - I'm tired. ..... of the problems, the lack of help (in my heart I know that there's not much they can do, but still.....) and generally feeling rotten. I don't want to stop the Ibrutinib as I know it's my best option. But how long before these side effects start to resolve? And realistically, do they? Okay, whinge over - sure I'll feel better in the morning!

[Cllcanada Top Poster CURE Hero]

Have you discussed this situation with your CLL specialist? If not you should... nobody should be in pain, and you need a correct diagnosis as to what the sores are and what can be done about them.

GPs know nothing about Imbruvica (ibrutinib) or its ramifications, you need to consult your treating doctor...

Mouth sores are not unknown on Imbruvica (ibrutinib) and can be managed... a cough without mucus is also a concern

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~chris

[Spacee]

I agree with Chris. I know you are so tired. But try to find a wheelchair at the clinic to use, if you need too. The CLL specialist is the one to see.

Hugs,

Linda

[JMSBD2]

I agree with cllcanada and Spacee. Get the right help you need from the specialist who knows. I sincerely hope you start feeling better soon!

I'm starting ibrutinib myself on 4/4.

Bri

[UKfulloflife]

Thank you everyone, for your concern. I saw a CLL Registrar and my Specialist Nurse last week, specifically about the sores on my tongue. The ones in my mouth aren't causing as much discomfort, it's the ones all around the sides and tip of my tongue that are very red and extremely painful. I was given soluble pain killers and a mouthwash, but unfortunately these are not really giving anything much in the way of relief. I've now had a chest X Ray as well, because of the cough, but don't know the results yet. Just feeling sorry for myself really, and probably could do with a kick up the backside - after all, there are plenty worse off than me!!

[MsLockYourPosts Passed Volunteer]

Another vote for seeing your CLL doctor. Also a laryngologist (ENT who specializes in the larynx - voice box). Unless the sores are affecting your voice, you may need to be on an antibiotic for an infection of the larynx. As a singer and former teacher (kind of need a voice for both) I have learned that if I shut my mouth for three days and there is no improvement I am probably dealing with an infection that will require an antibiotic. If there is an infection it can take 3 -6 weeks to have a fully healthy voice, but you should be experiencing improvement. Meanwhile, don't try to force a whisper. It just puts more strain on the vocal cords and can cause permanent damage. Mouth words, carry a note pad, have someone else return phone calls for you. In the past I had friends call my parents to tell them that I could listen, but not talk, and to call to make doctors' appointments for me, because I couldn't make enough noise, even if I forced things, to be heard. I hope you feel better soon!!!

[mgh348]

I have used triamcinolone acetamide dental paste when I burned the roof of my mouth and it was amazing. It adheres to the area and brings fast relief and healing. See if you can get a Rx for it.

[walkingspirit33]

It is quite alright to feel sorry for your self from time to time,wouldn't be normal if you did not...Not sure if you have friends and family support..it helps a lot to have it. I have over time found I had to change what I eat to help with some mouth problems, also I have a couple of antibiotics that I take on a regular basis try to switch and not stay on constantly though.With the way CLL affects the body as well as the ibrutinib your body will have to learn new ways to respond and this may take some time.

And when you are feeling down talk to some one..it well help.Have a better and grander day.

[Cindi73]

Sorry to hear your in so much pain. My uncle developed mouth sores after chemo. He has non Hoskins lymphoma. He used colgate's peroxal. It's a mouth wash with peroxide in it. It helped him. But you should check with your doctor. I hope you feel better soon. Cindi

[jaysearch]

Hi - You are about where I was nearly a year ago. Ibrutinib was my 2nd round also. The sores are horrible/painful etc. The Doctor Rules. Make sure you are using a Dr who has the knowledge of CLL, and it's intricacies. If there is nothing special (doctor wise) here's what helped me - try using a mouthwash/gargle of Baking Soda (after meals +) and follow the instructions. Always brush your teeth (if you can at all) using a baby's soft tooth brush. You will find help here. The tiredness does start to reduce as time goes on, and it will recur every once in a while, as your body gets used to the Ibrutinib. This takes time, and will knock you down. Just get up knowing that most of the side effects do pass. You MUST rest whenever your body tells you to. It needs to gain the strength that only rest can provide. Listen to your body (and your Drs). Ask all the questions you can, of any reliable source, but remember only your body can tell you how it feels. This site has helped so many, just by being supportive, and informative.

[UKfulloflife]

Thank you everyone. Feeling a bit more positive today. My husband spoke to the specialist team at the hospital yesterday (I still have no voice), and I now have stronger painkillers to take alongside those already prescribed, + a special oral rinse that coats the tongue to reduce the inflammation and ease the pain. Hopefully things will start to improve now!