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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Neuropathy from Velcade: can it occur late in treatment?

by Jmiller on Tue Mar 24, 2015 2:34 pm

My husband had 6 months of Velcade, Revlimid and dexa­meth­a­sone therapy. His last dose was in February.

Off and on throughout, he has complained of mild leg pain at night. Unfortunately, if things are not hurting him at the time of his appointments, he does not let the doctor know.

Lately, the leg pain has become increasingly problematic. I am concerned that this could be neuropathy.

Is it common for neuropathy to show up later on in treatment?

This Thursday he has a follow up skeletal survey and CT of the chest, abdomen, and pelvis plus his oncology blood workup. He then sees his oncologist next Thursday, and I plan on going with him so I can let the doctor know.

Jmiller
Name: Harleygirl
Who do you know with myeloma?: My husband
When were you/they diagnosed?: January 2014
Age at diagnosis: 57

Re: Neuropathy from Velcade: can it occur late in treatment?

by Mister Dana on Tue Mar 24, 2015 9:18 pm

The answer is yes. I took Velcade, Cytoxan and dex for five months before I experienced any peripheral neuropathy (PN), which for me was mild in the hands and went away after I stopped the chemo and went on to a stem cell transplant (SCT).

Mister Dana
Name: Mister Dana
Who do you know with myeloma?: Me
When were you/they diagnosed?: December 2013
Age at diagnosis: 66

Re: Neuropathy from Velcade: can it occur late in treatment?

by mikeb on Wed Mar 25, 2015 11:22 am

Hi Jmiller,

Another thing to consider is that the leg pain might be caused by a blood clot since blood clots are sometimes a side effect of Revlimid. Check for more swelling in one leg than in the other.

Blood clots are serious, so if you see any sign of a blood clot, your husband should see a doctor quickly.

Best wishes to you and your husband.
Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Neuropathy from Velcade: can it occur late in treatment?

by JimsKayak on Thu Mar 26, 2015 2:15 pm

I went through seven 21-day cycles of RVD, which ended in December. During the cycles, I only experienced mild tingling and occasional cramping in my hands. A month after the cycles were over, the neuropathy really set into my legs. I'm taking gabapentin, and I think its finally beginning to work, after doubling the original dose.

JimsKayak

Re: Neuropathy from Velcade: can it occur late in treatment?

by Aina on Thu Mar 26, 2015 7:28 pm

Yes I think it can. Had four cycles of Velcade before it got bad. Felt my feet cold from second cycle onwards and had to wear socks in warm weather as well. Stopped Velcade over 2 years ago and returning very slowly to normal.

Aina

Re: Neuropathy from Velcade: can it occur late in treatment?

by Dano on Thu Mar 26, 2015 7:45 pm

I was on RVD therapy for 7 cycles, and I did not develop neuropathy until the 7th cycle. My myeloma responded well to RVD, however my neuropathy is severe and Velcade is no longer an option for me.

Dano
Who do you know with myeloma?: Me
When were you/they diagnosed?: Jan 2014
Age at diagnosis: 65

Re: Neuropathy from Velcade: can it occur late in treatment?

by Dr. Jonathan Kaufman on Thu Mar 26, 2015 10:20 pm

Jmiller,

The others who posted on this forum have made several very good points. Firstly, there are other causes of leg pain that can be serious. So you definitely need to bring this issue up to your hus­band's oncologist at the next appointment.

Painful neuropathy can occur after treatment is complete. It's not uncommon for my patients to have 4 cycles of a Velcade-based treatment without any neuropathy and then weeks (maybe even months) later start to feel the symptoms of neuropathy. And, as was already stated, most patients' neuropathy gets better over time, and some resolves altogether. Unfortunately, it can take a long time.

I wish you and your husband my best,

Jlk

Dr. Jonathan Kaufman
Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor

Re: Neuropathy from Velcade: can it occur late in treatment?

by Cheryl G on Fri Mar 27, 2015 3:23 pm

Thank you for your posting, Dr. Kaufman. I didn't realize that neuropathy from Velcade can start to occur even after treatment with the drug has stopped.

Cheryl G

Re: Neuropathy from Velcade: can it occur late in treatment?

by Jmiller on Mon Mar 30, 2015 4:26 pm

Thank you all for your re­sponses. My husband has no signs of blood clots. He is still having leg pain and we will address it with his doctor. His skeletal survey showed no new lesions. His CT results do not show online. His lab work was on the low normal, except his IgM was 25. He has had a great deal of pain in his lower back but, as noted, nothing showed, and he becomes fatigued very easily. He is under a great deal of stress at work, so maybe that is part of his dis­comfort, which does not help. We will take this all up with Dr. Taber Thursday.

Jmiller
Name: Harleygirl
Who do you know with myeloma?: My husband
When were you/they diagnosed?: January 2014
Age at diagnosis: 57

Re: Neuropathy from Velcade: can it occur late in treatment?

by Jmiller on Wed Apr 01, 2015 12:01 pm

This is my husbands lab results

IGG 862 mg/dL 694.0 - 1619.0 N
IGM 25 mg/dL 40.0 - 230.0 L
KAP FLC 8.6 mg/L 0.0 - 22.2 N
LAM FLC 16.2 mg/L 0.0 - 34.4 N
K/L RATIO 0.531 0.41 - 1.43 N
B2-MICROGLOBIN 1800 ug/L 0.0 - 2700.0 N
IGA 118 mg/dL 70.0 - 400.0 N

U PROTEIN ELEC INTERPRETATION See Result Note: - N

Protein Beta 1 0.37 g/dL 0.35 - 0.66 N

Protein Elect Interpretation See Result Note: - N

Albumin, Electrophoresis 4.14 g/dL 3.5 - 5.2 N

Immunofixation, Urine See Result Note: - N

Protein Alpha 1 0.25 g/dL 0.22 - 0.42 N
Protein Alpha2 Globulin 0.92 g/dL 0.49 - 1.03 N
Protein Gamma Globulin 0.72 g/dL 0.69 - 1.41 N
PRO 2BETA 0.29 g/dL 0.18 - 0.5 N

U PROTEIN, TOTAL (RAW-mg/dL <4 mg/dL - N

IMMUNOFIXATION See Result Note: - N

TOTAL PROTEIN ELECTROPHORESIS 6.7 g/dL 6.2 - 8.1 N

Jmiller
Name: Harleygirl
Who do you know with myeloma?: My husband
When were you/they diagnosed?: January 2014
Age at diagnosis: 57

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