ClassyLady3 introduction

[ClassyLady3]

Just learned about this group. I have CLL/SLL for 7 years without treatment. I am new on Imbruvica, and have had some side effects. The drug is working, though. I appreciate all of the information you all share as we all learn how to live with CLL/SLL after diagnosis.

[annmcgowan]

Hi & welcome. You don’t say what your side effects are. I and many more on this site are on ibrutinib and may have some tips to share on how to manage side effects.

Ann

[ClassyLady3 in reply to annmcgowan]

Muscle cramps and spasms primarily

[ClassyLady3 in reply to ClassyLady3]

Do a lot of people get paraneoplastic syndrome along with the CLL/SLL?

[cllady01 Former Volunteer in reply to ClassyLady3]

Welcome ClassyLady, we are so happy to have you join. The shared experience and knowledge is so important to each of us.

As for your question, there are so many possibilities under the paraneoplastic syndrome label, that the answer to your question would have to be yes, but not all of the diseases, and not all of CLL patients.

Do you have a specific ailment that is more specifically named that you are experiencing? If you want to share that, there may be some who have experience to share.

For spasm/muscle cramping, staying well hydrated helps (but you do have instructions with Imbruvica to follow in that regard. Being sure to get enough potassium and magnesium in your diet is also important for stopping the spasm/cramping.

[annmcgowan in reply to ClassyLady3]

I can’t help you with those I didn’t have them but I am sure others will.

Good luck

Ann

[country76 in reply to ClassyLady3]

For muscle cramps and spasms I used mag/phos salts that melt under tongue, hydrating with water and warm compresses.

[Jacksc06]

Hi. Welcome to the family. I have been on Ibrutinib for just over a year, I did get some cramps but this has now subsided. I think most people get some form of side effects at first whilst the body gets used to the medication. I would suggest light stretching exercise to help, it seems to have worked for me.

[lankisterguy Volunteer]

Hi ClassyLady3,

-

Welcome to our group. I hope we can help you.

-

Here is a link to a recent discussion on Ibrutinib and cramps-

healthunlocked.com/cllsuppo...

-

And once you are on that page, look for a box labeled "Related Posts

*Muscle cramps on Imbruvica

*Muscle cramps on Imbruvica

*Ibrutinib and severe foot cramps

*Physical Activity, Cramping & Ibrutinib

*Muscle pain on Ibrutinib

That box will be upper right column on computer screens or scroll way below on tablets or other mobile devices. The list in the box is triggered by the title of the posting.

-

We have many past discussions that may be useful- try this link to a list of 75 past postings that mention cramps.

healthunlocked.com/cllsuppo...

-

Len

[Mystic75]

Welcome, Classy lady - looking forward to reading your posts.

Wishing you all the best on your treatment.

D.

[ClassyLady3 in reply to Mystic75]

I am so grateful to be welcomed into this family😊 I have had a solitary, lonely 7 year walk with CLL/SLL. Thank you to all of you for ‘being here’ to share as we all help one another once diagnosed.

[Mystic75 in reply to ClassyLady3]

One of the great aspects of this forum is that it is an outlet and resource where one can get support when needed. It fills a void that often cannot be filled with friends or family.

XO

D.

[Hidden]

Hi Classy lady, I've been taking Imbruvica for 13 months. At first the cramps were really bad, and came every night in bed, but they are now few and far between. I try to stay well hydrated and I'm sure that helps.

[CLLCalifornia-USA]

Hi Classy,

Welcome. I too have CLL/SLL and am on Ibrutinib. Having been treated previously with FR and BR, I’m thrilled at how well Ibrutinib works for me. I’ve been on Ibrutinib since 2017 and am able to resume life again. I sincerely hope it will do the same for you. Glad you found Healthunlocked. So many knowledgeable and kind people and quite often they will make you laugh. Kindness always, Sally

[ClassyLady3 in reply to CLLCalifornia-USA]

Thank you Sally. The SLL seems to give me the most trouble. I am looking forward to regaining some health and quality of life.

[sllincolorado in reply to ClassyLady3]

If the cramps and spasms don’t improve you may want to ask doc to switch you to acalbrutinib.

[ClassyLady3]

I will thank you