Newbie Here

Hi all!

My 82 year old father was diagnosed with MM on November 15, 2013 after suffering a pathological fracture to the right shoulder. Scans showed multiple lyctic lesions in pelvis and spine, as well as a mass in the stomach. Shoulder was repaired with rod and screws. 2 weeks of radiation to the shoulder/arm followed. Hemoglobin was 6, he was given 4 units of blood, it was 9 at discharge. Nearly complete pain relief after surgery. EGD confirmed the mass, doctor suspects it is benign but because of its location (between the tissues), is unable to biopsy without surgery, says it isn't bothering him right now, best to leave it alone. We're told this is a slow cancer and even at his age, his prognosis is good with treatment (3-5 years). Revlimid was started.

Last week (day 5 of revlimid), he had a dizzy spell in the middle of the night on the way to the bathroom, and fell. He began complaining of back pain and we went to the ER. X-rays showed nothing broken, they said he was severely bruised. Other appointments and lab work that week resulted in an emergency admit via ER just this past Friday, with high creatnine (1.9) and calcium (13) levels. Revlimid is discontinued. Scans there reveal a compression fracture at T7. He's complaining of severe pain (and this is a man who hadn't been to the doctor in over 30 years and never spent a night in a hospital prior to this, extremely high pain tolerance, would never complain). Because of the kidney issues, pain medication options are limited which has resulted in mostly uncontrolled pain.

Today is day 4 of the current hospital stay. Nothing much has happened since he came in on a Friday night, of course. They've put a lot of fluid and medication into him to bring down the creatnine and calcium levels. Calcium has slowly dropped and sits at 9 currently. Creatnine continues to rise and is now at 4.2. Potassium and hemoglobin are also low. Renal failure. Kidney specialist to be consulted. Likely radiation to the compression fracture and maybe the cement procedure but none of that can go on until the acute kidney issue is addressed.

Meanwhile, he is not eating. He was underweight by about 40 pounds (from Halloween til now) before this admit. Even with the 2 boost shakes I can force down him per day, he is taking in maybe 700 calories per day. He says he has no appetite. His urine output is decreasing. And a fresh piece of hell started yesterday-he seems to be at the beginning stages of dementia, or something similar. He is hallucinating, he is talking so crazy it is difficult to follow, he is sarcastic and semi hostile....all of these things are so far out of character for him, it is very sad to watch. No medication that he is on would cause it. A CT of his head a week ago was normal, he is having an MRI of the head tomorrow. Docs say this is all MM related and it's only coincidental that it occurred after starting the revlimid. This was supposed to be the slow cancer, the one you wanted if you had to get one. My dad was a 60 year old in an 80 year old's body less than 2 months ago. He drove, he traveled, he spent time with my kids, he mowed his yard, etc....nobody believed him to be his age. He has aged 15 years in the last 6 weeks. He's frail, he's a high fall risk, he's ill, he's out of his mind.

It's difficult. I am the only one he has. I have a full time job and 2 young children, and live 2 hours away from him. I don't know what's going on or what's going to happen. I worry about the stomach mass that nobody else seems to worry about. I cannot figure out this dementia stuff. I think his kidneys are going down. I don't like that he is in pain that cannot be managed.

Any similar experiences here?

Hi, sounds like your dad is in for a fight and will certainly need your help, try to get him to drink a lot of water as it flushes the kidneys of damaging protein produced by the MM. If his calcium level is high it will cause confusion which will seem like dementia. I have been on revlimid for about 2.25 years, its a nasty drug but it does work. Do not trust the prognosis as this type of cancer is changing so fast that all the study results are not complete. MM has had more new drugs released in the last 2 years than most other types of cancer. They are having great success with treatments although most of them will impact your life style and could limit your mobility. For me the drug cocktail of velcade,dexamethasone and revlimid has been very successful.

Quit often MM is not found until there is a kidney issue, by then there is significant bone problems. MM is unique to each person with different results and conditions.

God Bless and be with you and Dad.