Has anyone seen my post?

[-Sparky-]

I have posted that I have two side effects (diarrhea and sores on my tongue) and I wonder if these could be from the chemo I had or from CLL. I have heard nothing and suspect that my post may never have gotten onto the site. Please let me know if my post was seen. thank you.

[Newdawn Administrator]

No this is your first actual post Sparky although you’ve made replies (last one 17 days ago). Obviously something went wrong when you attempted to post.

This post describes the issues and hopefully people will respond.

Regards,

Newdawn

[AdrianUK]

Diahorea and sores on the tongue can be caused by infections and indirectly chemo can make our immune system worse. But I note you are on immunoglobulin. Sounds like you should speak to your doctors about your symptoms and see if there’s some things they can do to help. A lot depends on the types of sores on your tongue as to what might help. I would encourage you to talk to both your blood doctor and your primary care / GP doctors about this. And ask for them to help you. Hopefully they can find a way to resolve this. As I say they may need to look at your mouth to figure out what to give you.

[GMa27]

You didn't mention what kind of chemo you were on.

I had FCR and didn't have either of those side effects.

Discuss with your hematologist.

Everyone reacts differently.

💕

[cllady01 Former Volunteer]

Sparky, did you have the tongue sores while you were in treatment with Bendamustine+Rituxan?

I ask because mouth sores/ulcers are a common side effect of Bendamustine, but I don't know if it is a long-term, long lasting effect. I certainly may be, since the meds. can keep working for awhile in our systems--though, how long has it been since your treatment stopped?

Have you been told of anything to help with the healing of the sores?

If you haven't checked with a dentist, that might be a good place to inquire for an inspection and suggestions for helping with the healing.

Also, diet may be involved with both the tongue sores and the diarrhea.

Best wishes in getting this sorted and finding a comfortable space.

[-Sparky-]

thanks have completed bendamustine and rutuxin Jan 2019 developed these sores May 2020 pcp gave me a10-day antibiotic with no success saw an oral surgeon he had no idea except to find a Dr. of Oral Medicine in the Boston area which is an hour and a half away and I've rarely gone into Boston. I live in NH and wish that someone locally could help. I get a monthly IG infusion. Thankful that someone gave me the name of a Dr. at Tuft's and I will give him a call. It's a shame that this is still such an unknown malady to so many of the local doctors.

[AnneHill]

I get a sore tongue. Just like I had burnt it on a hot drink and the inside of my cheek gets sore. Luckily it doesnt last more than a day and is bearable. Other people have had problems with their mouths whilst taking ibrutinib. They gave suggestions to help this. You may be able to find these on this site.

The diarhea is a nuisance. Not every day but I get pains in my stomach and urgency. Then I feel like I still need to go. It takes over my day because at some stage I have to make another dash. I have started using loperamide ( Imodium) It helps but its more like irritable bowel. It is listed as a side effect of Ibrutinib.

I have joint and muscle pain. Surprisingly the consultant is going to see me on Tuesday.

This site is the best place to get info on side effects because people on here have experienced them. Most doctors know little about ibrutinib and you need a haematologist who does. I hope the treatment is working for you. Anne uk