[MrPotatohead]

Not feeling better despite treatment response

by MrPotatohead on Wed Nov 25, 2015 1:44 pm

Hi Everyone

In spite of having a dramatic response to my treatment (carfilzomib, cyclophosphamide, and dexamethasone for the myeloma, along with zometa and IVIG infusions) I do not feel any better. If anything, my bone pain has gotten worse and I have fresh rib fractures. This in spite of the fact that my K-FLC as measured by the free light chain serum assay has gone fom 308 at my initial diagnosis back in March, to 5 currently.

I asked my oncologist if is possible that I might have another clone that is not being affected by the treatment, and he said it was possible, but extremely unlikely.

I am wondering if others have had this experience, or might have some information by way of explanation.

Numerous posters have reported a decrease in bone pain, even in the initial stages of treatment. I am well along that journey, but have had no such relief.

Any input would be greatly appreciated.

[Tom74]

Re: Not feeling better despite treatment response

by Tom74 on Wed Nov 25, 2015 3:28 pm

My oncologist say my cancer markers are ahead of schedule, but the side effects of the Revlimid, dex, and Velcade make me very sick. I also have pain in the lower back, no energy, stomach problems, and mouth sores.

I am staying positive, just hope the side effects gets better.

Tom

[MrPotatohead]

Re: Not feeling better despite treatment response

by MrPotatohead on Wed Nov 25, 2015 8:32 pm

Hi Tom74

I have all the same issues you mention, except for the mouth sores. The thing is, in my case, I had the fatigue and back pain before I started treatment, and was expecting them to improve as the treatments brought the myeloma down. It hasn't happened.

I would think that at least the pain would improve.

In any case, I hope you feel better fast, and thanks for posting.

[lwem]

Re: Not feeling better despite treatment response

by lwem on Wed Nov 25, 2015 9:11 pm

My husband responded well to RVD induction, but also hasn't been feeling great notwithstanding that he has had a break for nearly two months due to the side effects of treatment - - peripheral neuropathy and some GI issues. Similarly, his back pain is still significant. We understand that the back pain is extremely slow to resolve, and this is to be expected.

I hope you start feeling well soon - it can be very discouraging.

[MrPotatohead]

Re: Not feeling better despite treatment response

by MrPotatohead on Wed Nov 25, 2015 11:13 pm

Thank you, Iwem.

I see from your husband's experience that others have the same issues. Thanks for sharing and I hope your husband starts feeling better ASAP.

[Bar-none]

Re: Not feeling better despite treatment response

by Bar-none on Thu Nov 26, 2015 5:56 pm

Hi Mr PH,

Have you had any radiotherapy to the painful or fractured areas? If not, would be worth inquiring about, since my pain was reduced significantly after radiation to the lesions.

Best! BN

[MrPotatohead]

Re: Not feeling better despite treatment response

by MrPotatohead on Thu Nov 26, 2015 6:55 pm

Thanks very much for the suggestion, Bar-none.

I am going to see a radiologist who does kyphoplasty, which is another option I am exploring (I had two spinal fractures fixed that way and it did reduce my pain at the time). I will ask him about your idea.

I am glad it worked for you!