denosumab

[RosettaClapp]

Any one had experience of denosumab after 1st line CLL treatment? My gp is suggesting these jabs but he's new and as I've read that it can cause immunocompromised I'm wondering if it's such a good idea.. Help

[SofiaDeo]

As far as I know, all the MABs used for any condition can affect the hematopoetic system.

According to the physician CE information, there is risk of respiratory infection, which we CLL'ers are particulary susceptible to.

ncbi.nlm.nih.gov/books/NBK5...

You haven't mentioned why your doc is prescribing this in your unlocked post. Depending on why you need it, and how severe the condition you need it for, needs to be weighed against any drug side effect potential. IMO you need to bring your hem-onc into this discussion, since infection risk seems to me to be the thing that could be a "worst case" side effect. Anemia, low platelets, wacky electrolytes, loss of appetite, diarrhea, and the others can generally be monitored for and adjusted with meds more easily. Assessing your infection, knowing that CLL people often need extended courses of therapy, and for how long, is something a hem-onc is best prepared to answer.

"Infection Risk" IMO is something that is specific to you, and how your body has reacted in past/how the measurements of your immunity have been going. Unless your GP has been getting copies of the hem-onc monitoring and patient assessment, and is experienced in how immune compromised patients generally react, they may not have the best information. This is why I say, bring your hem-onc into this. Especially if your GP is new, and has only previous records. They haven't a great deal of experience with how your immunity has been faring, while your hem-onc has.

[RosettaClapp in reply to SofiaDeo]

Thank you for that I'll ring consultant on Monday.. How do I lock the post?

[mrsjsmith]

As Sofia says why is your GP wanting to prescribe it. On checking in the U.K. the common use is for osteoporosis and I wouldn’t expect a GP to prescribe but a Rheumatologist.

Colette

[RosettaClapp in reply to mrsjsmith]

He is proposing it as a follow on from 11 yrs of alendronic acid

[mrsjsmith in reply to RosettaClapp]

When did you last have a Dexa scan ? I would still expect a change of this nature in medication to come from a rheumatologist. I am fairly recently diagnosed and when I discussed this medication I was told I wasn’t severe enough to warrant it.

Colette

[RosettaClapp in reply to mrsjsmith]

I had a dexa last summer when I broke 2x ribs falling.. I have always fallen often (through out my life) but now my reactions are slower I am breaking bones.. The last. Was wrist. 7 weeks ago.. Dexa showed within normal range but I have been taking Alendronic acid weekly for 11 years after a previous dexa showed osteopena.

[mrsjsmith in reply to RosettaClapp]

That is a worrying number of falls. Ask if there is a balance clinic near you, or a physiotherapist that specialises in balance, and have you had your hearing tested recently. I was lucky to be referred to a very good balance clinic and it’s been a huge help.

Colette