Well, this is my first time posting. My name is Kelsey and my mom (Kim) was diagnosed this past Tuesday, April 30th, 2013. This has been the absolute hardest week of my entire life. My mother is only 48, she's so young and leads a relatively normal/healthy lifestyle. She started having terrible back pain in December. I mean, it was bad. She could barely get up out of bed and I had to help her get dressed a few times. You should know, my mom is a very strong-willed woman, she does everything by herself, is self-made, and works constantly (SHE LOVES IT). So, as you can imagine, seeing her in this much pain and seeing her struggle was something I was completely unfamiliar with. It broke my heart. She saw a series of doctors over the past few months, all of which did pretty much nothing for her. Our primary care physician is a JOKE. I mean, she has a huge knot on her back and I remember looking at it sometimes being like "uh mom, is that normal?". His response was, "if it doesn't hurt, don't worry about it". Oh gee, thanks dude. Not sure if this knot on her back has anything to do with what's going on but as a doctor I would think if a patient has a concern, you would take the time to ease their minds. Just my personal opinion though.So she then sought out the help of our family OBGYN, just to make sure. This lady is fantastic. She actually is the doctor that will be delivering my first baby next month (my mom's first grandchild). She found high levels of calcium in her blood and suggested she see an endocrinologist to have her parathyroid tested.Unfortunately, the next available appt for new patients was over 2 months out. In the time she was waiting, she was sent by our PCP to a spine specialist. Oh, what a waste of time that was. The lady told my mom her spine was completely normal. Mind you, my mom has been told her entire life that she has slight scoliosis in her spine. But NOPE, apparently it magically disappeared!! So the specialist just offered up that she go to physical therapy to relieve the pain. She did physical therapy for about a month and a half and actually started feeling so much better. I was so relieved. My mom finally seemed to be back to normal. So finally, she goes to the endocrinologist. Her parathyroid was tested and came back completely normal. (With all of these completely normal tests saying how healthy she is... I never saw what was coming next). The endocrinologist suggested she do a 24 hour urine analysis, juuust to make sure everything was normal. Bam, that's when time stopped. She got the call on Tuesday that an abnormal protein had shown up in her urine and that most likely, cancer was the culprit. By some graces of God, the endocrinologist happens to be married to an oncologist. She actually found it by consulting him at the dinner table that night. That's how she caught it. So, we saw the oncologist this past Friday and it was hard, really hard. I can only imagine how she is coping, she's holding it together so well. I expect absolutely nothing less of her though. She goes for bone marrow biopsy this Thursday. Of course, I will be there every step of the way for her. I'm sorry, I realize this is very long. I don't expect most to read through all of it, but it feels really good to share and get this out. I've read through tons of your stories before getting the courage to post and I have to say, this site definitely helps to ease some fears seeing just how strong you all are.
awesome first post!
I am so sorry she had to go through all that. The bone marrow biopsy isn't all that bad, it scares you more than anything. I was pretty nervous, but I've been through many worse procedures. Her life will change, that's for sure, but I just found that I had to enjoy what I could do. I go to hematologist oncologist who specializes in Multiple Myeloma and she's fantastic and it's managed quite well. The first six months I had a ton of painful things going on, but it's under control now and it all seems like a bad dream.
She's lucky to have you and your support. Believe me, she'll need it. Soon she'll learn to live with it, at first the diagnosis is a shock, then you do what you have to do...
Here's my blog http://forum.lifewithmultiplemyeloma.org/profiles/blog/list?user=1add... I hope it helps... Jackie
My heart goes out to you and your mom, but as alpacalady has already said, yes you learn to live with it and it becomes part of your life. However several things you need to know, for me the bone marrow biopsy is by far the most painful test ever devised by man, the inventor must be evil. It is different for each person, I have had 3, two hurt like crazy and one wasn't to bad. I would highly recommend starting a blog or page hear and recording your(moms) thoughts and conditions and how things are going. This is a long term fight and it really helps when you hear things that rattles your tree to be able to look back and see just how far you have come, I know I have needed mine recently.
God Bless
Rodney
Thank you both for your replies. I have read through both of your blogs actually and I can’t tell you how much help they have been. Honestly, reading personal experiences is where I’ve already gathered so much knowledge from. But more importantly, I have gained a sense of hope. This is all still very new to me. I was so beyond angry when I found out, I think I may be in the denial stage now. I’m not sure. I know she has it but I keep thinking, it’s not that bad, she’s going to be ok, nothing will change for her. While I know that’s not true, things will change, who’s to say they will change for the worst? I’m having a hard time finding a balance between positive thoughts and accepting this new twist that life has thrown our way.
As for the bone marrow biopsy, she HATED it. She said it was one of the most painful things she had ever been through. Mind you, the doc was having a hard time extracting any fluid and so it took longer than expected. We go back this Monday for her follow up and “official diagnosis”, if you will. I think I will keep this updated. It feels good to get some of these thoughts out of my head and to also know that there is support out there. I’m my moms biggest fan and always will be. I’ll be by her side no matter what and will be keeping you all in my thoughts as well. Thank you again and hope everyone is doing well!
Hi, food for thought here. The bone marrow biopsy , I had 1 with hodgekin's 17 years ago, hurt like crazy. Had 1 at the start of MM and it was not to bad, I really was surprised as I dreaded having it done, the memory was very vivid. Received treatment for 15 months and then had the stem cell transplant , they waited 30 days and did a bone marrow. Hurt worse than anything I have ever experienced, they were worried about a heart attack it was that severe, maybe the pain is a marker for the hardness of the bones. Providing your skeleton is strong; it hurts? maybe , I don't know the answer but I bet between the 4 of us we can figure it out .
Welp, it was a good thought Rodney and I was really hoping you were right. We had her official diagnosis appointment yesterday and unfortunately, that's not what the doc said :( He said the reason he wasn't able to extract any fluid from that spot was because the particular spot was (he suspects) about 90% full of myeloma cells. He also said that the soft spots in her bones that they found on the x-ray, he suspects are close to 100% myeloma cells. BLAH. That's not what I was expecting to hear at all. He thinks she's probably had it for at least 6 months, maybe a year, which is the most frustrating part. How did it go undetected for so long? You know, as a doctor I would think that if a patient is complaining of debilitating pain and all of her tests are coming back normal then that should really raise some questions and lead them to think ok, what is REALLY causing this pain? But hey, I'm not a doctor. No point in being bitter now though. While I'm by no means glad that these are the cards that have been dealt, I am thankful that we now know what's going on so she can get in there and start beating this monster. He put her at about a stage 2 and says he's going to start her out on RVD and do more aggressive doses than normal to try and knock it out and aim for a SCT sooner than later. I know most of you know a lot of more about treatments and this regimen so any insight would be greatly appreciated. Hope all are doing well.
rodney said:
Hi, food for thought here. The bone marrow biopsy , I had 1 with hodgekin's 17 years ago, hurt like crazy. Had 1 at the start of MM and it was not to bad, I really was surprised as I dreaded having it done, the memory was very vivid. Received treatment for 15 months and then had the stem cell transplant , they waited 30 days and did a bone marrow. Hurt worse than anything I have ever experienced, they were worried about a heart attack it was that severe, maybe the pain is a marker for the hardness of the bones. Providing your skeleton is strong; it hurts? maybe , I don't know the answer but I bet between the 4 of us we can figure it out .
Hi,sorry to hear of the results, I really wish it had been a better answer. This is a tough illness, although your mom may tolerate the treatment well. RVD, I have never heard it called that but it would be my guess that it is Revlimid, Velcade and Dexamethasone. They are a more common treatment regiment. I think one of the more common treatment regiments to start would be Valcade and Dex. , seems like they add revlimid later when needed. Sounds like the doctor is going for the big guns from the start, that's not a bad thing. You always must remember that doctors are human to, they have families, children and lives. MM can be a hard one to diagnose because of the various symptoms can be aligned with so many other problems. I was lucky, I knew my oncologist for many years, he diagnosed this after an annual visit that I almost canceled. My wife insisted that I go, she had noticed that I was tired more frequent than normal. She went along and told my doctor, I would have said that I felt good as I thought she was being over cautious. So here I am on RVD for quite some time. I also had a stem cell transplant. Concerning mom, it will most likely be a 28 day cycle. Revlimid 21 days on with a 7 day break; its a pill. Velcade 2 times a week in shot form and dex pills once a week to co-inside with the velcade . They should get a blood test weekly to check her counts as all these will mess with blood counts. There are many variations of this ; different days and dosage's , however the objective is always the same, lower numbers with few side effects. Make sure she is careful about bone breakage, very little lifting and No Falls. She will most likely also get zometa, it is a bone protector/builder. I get it once a month by IV. As you said the most important thing right now is to get the treatment started and not be upset with the doctors. She will most likely need some emotional and physical support from you, its hard to keep a good outlook when its just getting started. The drugs will most likely make her very tired and cause some neoropahty through time. I have maintained a very busy lifestyle, busy hands are happy hands. I think this plus an unconditional faith has kept me going, I know it has strengthened my convictions that life is a gift and we must cherish each day. You can never really appreciate a sunset until you know it could be your last, its then you know that for that moment in time, the sunset is yours. It changes your heart for the better. So take the lemons and make lemonade , enjoy your mom and all will be good.
God Bless
Rodney