My mom doesn’t want to take the chemotherapy. She did a onetime 4Day-24hr non stop drip of I think its cytopin and another medication and It put her in critical condition. It was terrible. She screamed in pain. She then tried a nupegen shot to help produce her own blood cells. now she has kyphosis and nerve damage in her neck muscles. Her kidneys are borderline OK. Her feet swell all the time. I can’t get her to drink water. Ive heard of some fruits that heal and cure the disease but I can’t even get her to drink water. I’m desperate. What do I tell her? How do I encourage her to try more meds for a longer life span. She says all the time when I mention meds that GOD IS IN CHARGE. And he is but I feel so helpless…
Welcome Lina! I am very sorry to hear about your Mom but, you have come to a wonderful place for support, encouragement and friendship. We are all like family here and all share the same thing, either personally dealing with myeloma or loving / caring for someone who has it.
On February 19, 2014, my dear boyfriend was diagnosed with multiple myeloma. Needless to say, it came as a complete shock to the both of us. He had been suffering from muscle cramps ( Charlie horses ) for several months. He mentioned it to his chiropractor who sent him for blood work & x-rays. Multiple Myeloma was revealed. Neither of us had ever heard of this and shock & fear set in. By the end of February, he began chemo. He was put on Revlimid, Velcade & Dexmethasone. Like you Lina, I felt completely helpless and like your Mom, I knew my only comfort was to pray and put everything in God's hands. He remained on the chemo approximately 4 months. His body tolerated the chemo very well. He continued to go into the office most days and when he wasn't feeling up to it, he was able to work from home. After he completed the chemo, I knew the next step would be a stem cell transplant. This terrified me. He struggled with making the "right" decision. Should he have the transplant? Should he not have it? We both did a lot of research and shared things we read with each other. I am a big fan of Robin Roberts (Good Morning America) and while she does not have myeloma, she went through a bone marrow transplant for MDS. She wrote a book, which my boyfriend bought me. When I read that book I knew my boyfriend had to read it. He did and I believe it helped him to make the decision he had been struggling with. On August 14, he had his transplant. Thanks be to God, he did very well. Minor complications. He returned to work full-time 6 weeks after the transplant. His kappa light chain numbers are still above the normal range and his Dr. has put him on a maintenance dose of Revlimid. I am happy to report he is doing very well.
My advice to you would be to seek a good myeloma specialist and have him / her explain everything to your Mom. Keep in mind your Mom is scared and most likely in shock & denial about the situation. Fear can be crippling, to the point it paralyzes you from being able to move forward. While it may seem she is being stubborn, fear is the culprit. Perhaps you might consider having her read Robin Roberts book. It may help her to realize she is not alone. Be patient and allow her to absorb what is happening to her. Never underestimate the power of prayer. Pray.
I believe one of the reason's my boyfriend has done so well is due to a total change in diet and taking supplements to help strengthen his body for chemo & transplant. Encourage your Mom to eat a healthy diet. This will help to strengthen her.
My thoughts and prayers are with you & your Mom. If there is anything at all I can do, please feel free to message me anytime. I am not an expert but, I understand what you are going through and can listen. That is why I joined this group and am so honored they saw fit to make me a moderator here. It is a truly rewarding experience.
God Bless you & your Mom,
JerseyGyrl