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Re: My story

by Ron Harvot on Fri Jun 24, 2016 5:09 pm

Face flushing is one of the symptoms of dex. I get that along with hiccups, moodiness, insomnia, slight swelling in my feet, increase in blood pressure and heart rate. Also am "up" like on high amounts of caffeine for about 24 hours, then come "down" the second day. When I am up, I ex­peri­ence the insomnia and moodiness the most. These symptoms normally go away in 48-54 hours.

I have been on Velcade for years now (7) and have not experienced any real side effects that I can point to except for a red rash about the size of a half-dollar around the injection site. They give me a shot in the belly just above my belt line. I rotate the injection site from one side to the other, so the rash can go away. It takes a week to 10 days to fade. I never had the neuropathy that some patients get even when I was taking the Velcade intravenously. It appears to effect about 40% of patients, so I guess I was fortunate in that regard.

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: My story

by Little Monkey on Fri Jun 24, 2016 6:35 pm

Hi Ron,

Ya, my dad's hematologist has removed Velcade this week, and if it continues to happen, she will remove cyclophosphamide next, etc., until she finds the culprit.

Her long-term plans at relapse include some of the very new meds that have just come out.

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: My story

by Little Monkey on Mon Oct 03, 2016 4:19 pm

Well, we went back to the neurosurgeon about the pain and numbness in my dad's right leg. The neurosurgeon said, unfortunately, he observed nothing in dad's recent back MRI that would explain the pain from a neurosurgical standpoint.

For the pain, my dad is on Lyrica, Cymbalta, hydromorphone and he just started fentanyl patches, with little relief. It was the neurosurgeon's opinion that opioids are not really the best to deal with the type of pain that myeloma can cause.

My dad had this pain before the surgery to remove the plasmacytoma pushing against the spinal cord. Now I am wondering if there might be some unknown co-morbidity. Having myeloma does not preclude other illnesses.

The MRI did report a 1.2 millimeter lesion, which is not new news. It was in the past MRI as well.

Should my dad ask his haematologist for a referral back to his former radiation oncologist to investigate whether radiation might provide some relief to the increasing pain and numbness to his leg (from the buttocks to his toe)?

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: My story

by Little Monkey on Fri Jul 07, 2017 7:51 am

So my dad had his quarterly appointment with his haematologist. His free light chain assay came back normal, nothing remarkable from the blood tests (calcium, etc.). However, the haematologist said the nodule in his lung has grown a small amount according to the last CAT scan, but the doctor didn't want my dad to panic.

My dad will see his pulmonologist next week at the same hospital.

My concern is that we are seeing the start of a pulmonary plasmacytoma. :?:

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: My story

by Little Monkey on Wed Aug 23, 2017 6:50 pm

During the PET scan my dad had the other day to determine the extent of his adenocarcinoma (lung cancer), they found more myeloma lesions on his spine.

The good news is that his lung cancer is stage one. They are deciding whether to go by laparo­scopic surgery or CyberKnife to remove the lung cancer.

Bad news is obviously the activity on his spine. I recently read a new study out of China where Velcade followed by Revlimid maintenance therapy is effective in treating both types of cancer post removal of the adenocarcinoma.

https://www.ncbi.nlm.nih.gov/pubmed/28072730

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: My story

by Little Monkey on Sun Oct 15, 2017 10:02 am

My dad has decided against laparoscopic surgery at this time (still has memories of his 5.5 hour surgery to remove his plasmacytoma) to remove the lung cancer. Instead, he will undergo radiation treatment via volumetric modulated arc radiotherapy (VMAT).

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

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