My mother in Arizona was diagnosed with Multiple Myeloma about 5 weeks ago and began a treatment with Revlimd (Lenalidomide), radiation treatment for a tumor growing on her thoracic vertebrae and dexamethasone. She is 75 years old.
She has had many complications from the treatment, including dangerously low white blood cell count, severe anemia and most recently now has come down with pneumonia. Her hematologist has ceased the Revlimd drug after she had been on it for 18 days to see if her condition might improve.
Throughout this ordeal, she has needed 10 units of blood over the past 5 weeks (6 of those in the past 10 days), with an episode about 10 days ago where her blood level was very crticially low, 60% blood oxygen level and BP of 77/38. She was placed in ICU in critical condition when her kidneys stopped functioning. Fortunately with the blood and other life saving measures, she was able to be stabilized and regained kidney function.
It seems like the treatments have accelerated the decline of her overall condition and made the anemia and white blood cell count worse. She has been hospitalized the past 10 days and does not seem to be improving.
Has anyone else had such a bad reaction to the treatments and what was the alternative treatment if Revlimd (Lenalidomide) did not work?
I am sorry your mother is having such a rough time with the treatments, MPCal. My dad had pancreatic cancer, and elected to stop treatments after it was clear they they were just too destructive to his body. Keep talking to your mom's doctors as well about all available choices for your mom. I hope there is another treatment that will helpful but gentler.
So sorry to hear of your mother's difficult time. Yes, Rev along with other chemos can cause low blood counts including the myeloma itself. It's imperative that you have a myeloma oncologist not just a general oncologist work with this situation. I feel it's impossible for a general oncologist to be an expert in every type of cancer. A myeloma specialist would be able to more closely examine which direction to go. I would highly recommend doing this immediately, since the bigger the foothold myeloma takes the harder it is to control. Many things will have to be taken into consideration, including you mother's overall general health, when it comes to other options in controlling the myeloma.
You will find that many myeloma patients have gone through critical life/death situations in their myeloma fight. I personally was diagnosed with StageIII myeloma, with bone damage and kidney failure. My kidney's luckily, as your mothers, started working again, which is excellent news. My myeloma has relapsed 2 times, though I'm younger at age 60, I was once told the best months I would have would be the next 5 months, they did not expect me to live, that was 4 1/2 years ago, I too had several episodes of being on the brink of death, only to come back. So your mother severe situation is not uncommon, it is also, thankfully NOT uncommon for people to come back from this and recover and live a good life once again. Do not give up hope, get that specialist in or even get a second opinion.
I wish you and your mother the very best and will keep you both in my prayers.
I vividly recall my first inquiry about multiple myeloma. There is no cure and it is terminal! After a long and twisting road, and with the aide of Velcade and Revmulid me wife has survived over ten years of challenges and opportunities. Your mother’s strength and the Optimistic outlook that you present to her will play a major role in her recovery. There are no problems in life, just challenges and opportunities. In addition to the multiple myeloma, my wife is also recovering from breast cancer! Good luck and God bless both of you. Remember, we are all terminal!
I agree with every word Joyce S provided you with …great sound advise for sure. my husband is 66 and was diagnosed with MMthree years ago…he had chemo…stem cell transpqlnr and now finishing two years of revlimid.henalso has had low counts and at times had to come off the drugs for a week or so to allow his WBC and immune system numbers to increase?Will pray for your mom
PianoJoy said:
So sorry to hear of your mother’s difficult time. Yes, Rev along with other chemos can cause low blood counts including the myeloma itself. It’s imperative that you have a myeloma oncologist not just a general oncologist work with this situation. I feel it’s impossible for a general oncologist to be an expert in every type of cancer. A myeloma specialist would be able to more closely examine which direction to go. I would highly recommend doing this immediately, since the bigger the foothold myeloma takes the harder it is to control. Many things will have to be taken into consideration, including you mother’s overall general health, when it comes to other options in controlling the myeloma.
You will find that many myeloma patients have gone through critical life/death situations in their myeloma fight. I personally was diagnosed with StageIII myeloma, with bone damage and kidney failure. My kidney’s luckily, as your mothers, started working again, which is excellent news. My myeloma has relapsed 2 times, though I’m younger at age 60, I was once told the best months I would have would be the next 5 months, they did not expect me to live, that was 4 1/2 years ago, I too had several episodes of being on the brink of death, only to come back. So your mother severe situation is not uncommon, it is also, thankfully NOT uncommon for people to come back from this and recover and live a good life once again. Do not give up hope, get that specialist in or even get a second opinion.
I wish you and your mother the very best and will keep you both in my prayers.
So sorry to hear this a out your mother. I know how frustrating it can be. Velcade is another treatment, but that may be harder on her. My husband has been on both, sometimes together and sometimes separate. He has been hospitalized 8 times just in the last two years and in a nursing home three times all because of the tretments. He has had MM for almost 6 years now. He has been in remission 3 times. He has had kidney failure, pneumonia, blood clots,bowel obstructions and once his bowels stopped working from radiation, and he has pulled through them all and has some of the mentioned things more than once. They just keep taking him off treatment and as soon as his health improves, they start it back up again if his cancer numbers are up. One thing I can tell you is when the cancer numbers are high and he is not on treatment, the cancer takes him down fast.
I hope this helps and not hurts to hear this, don’t be afraid to ask the doctors questions. I do and I even tell them when I think they are wrong…I believe that the caregiver know that persons body better than the doctors. I have to remind them all the time the what’s, how’s, when’s!!
Best wishes to you and your mother !
Thank you for all of your comments and encouragement. Unfortunately my mom has been moved to hospice care with irreversible lung damage caused by pneumonia. This has been a tough journey but she is at peace with what’s next. The key is to diagnose this early and get the right treatment. Thank you all and god bless!
My mother is still in hospice and her blood level is holding at around 9.5 which isn't bad considering how quickly it was dropping when she was under chemo and radiation treatment. Her pneumonia seems to be worsening and she sleeps about 21-13 hours a day now. Doctors do not seem to have an opinion on how long she has to live but I wonder if the limited chemo and radiation treatment she underwent for a few weeks may have helped her somewhat since the cessation of those treatments has generally improved her blood health. The problem is that the other conditions, such as pneumonia may end of being the trigger which accelerates the end of life.
As a family we are torn between what would have happened if she was willing to fight harder through the treatments to give them a chance to have some good. Her inability to move in or out of bed has created many problems with her lungs and probably created the pneumonia condition. For now, we are keeping her in hospice and doing the best to treat her with some hope that perhaps she will improve on her own now that the cancer treatments have halted.