My Multiple Myeloma (MM) Story
I was always fairly active and was an on again, off again jogger. At 50 years old in October 2005, I was well on my way of getting back into shape. I was back in my Size 4 jeans and was jogging and working out with weights regularly at Sprint’s (my employer) gym on campus.
The morning of October 4, 2005, I jogged 3 miles in 33 minutes on the treadmill, plus worked out with weights. In retrospect, I did notice that I felt a little different that morning, weaker maybe, but still able to give a good workout. At 1:30am Wednesday morning, 10/5/05, I woke up with a terrible headache, very nauseous, and vomiting. I experienced a thirty minute episode of severe chills. I remember putting on fuzzy pajamas, a long gown, a robe, socks, and an extra blanket on the bed and I still could not get warm enough. Thank goodness the chills subsided. I called in sick Wednesday morning (10/5/05) telling my manager that I had a migraine.
I remained in bed and very sick the entire day, that night, and Thursday. Again, I called in sick Thursday. I was in the middle of an important project, but I was too sick to get too upset about it, though I recall helping my boss over the phone find my file on my computer. Little did I know this would be the last effort I’d ever do in regards to my job responsibilities at Sprint. I managed to get a glass of 7-up over ice and sipped on it throughout the day so that I wouldn’t dehydrate. My oldest sister, Doris, who lives in Colorado, called me that afternoon and she somehow noticed I sounded different. She warned me that my illness didn’t sound like my typical migraine. She encouraged me to contact my other sister and head to the hospital.
I contacted my Primary Care Physician’s (PCP) office and asked for a refill of my migraine pills. The doctor returned my call later Thursday afternoon. He asked whether I had a temperature. I hadn’t taken it yet. He said for me to come to his office the next day at 1:30pm unless I had a temperature. In that case, he instructed me to head to the hospital emergency room. Sure enough, I not only had about a 103 temperature, but I experienced another thirty minute episode of those strange chills. I called Joy, my sister who lives next to me, and asked her to bring me to the hospital. I must have been out-of-my-mind sick because I didn’t even get dressed. I went in my pajamas and robe!! I must not have been thinking.
They checked for viral meningitis. Yuck. They do this by inserting a needle in your back! Negative. Once they got my temperature down, they sent me home, only after they’d taken four vials of blood, two from each arm.
At 7:30AM the next morning the hospital called me and asked me to return to the hospital and check in for observation. They said my blood was full of bacteria in all four vials. That was Friday, October 7, 2005. I was there a week, discharged on the following Friday, October 14, 2005. During that week I had a multitude of tests. Due to the bacteria in my blood, an infectious disease doctor was one of the doctors put on my care team, I guess you’d call them. They were all trying to figure out what was wrong with me. It was a mystery for most of the week. I sensed some sort of power struggle or competition between the doctors and the infectious disease doctor.
Besides the bacteria in my blood and a temperature, I had several other symptoms. My right arm became immobile. My shoulder and elbow hurt very much and I could not move my arm at all. I held it near my body in that fetal-like position. Boy was it sore! My major organs were not working properly. My gall bladder was functioning at only 7% and they removed it on 10/12/07. My liver was swollen with fluid around it. My heart was functioning at 60%. They also noticed that my blood contained several abnormal white cells. This seems so obvious to me now, but before this time I had no idea that cancer cells are abnormal plasma or white cells. Dr. G. (infectious disease doctor) suspected Myeloma from the beginning. I think the other doctors wanted to prove him wrong. It was almost funny to watch the doctors work against each other. The main doctor on my case asked whether I had an alcohol problem. They had some other doctor checking my right arm out. They basically had me summarized as having arthritis in my right arm and I guess alcoholism for my liver. I don’t know how they were explaining my gall bladder and the white abnormal cells. Once they went through the required protocol I guess, Dr. G. ordered a bone marrow biopsy which he was able to schedule on Friday, 10/14/l05, just before I was discharged. We set up a follow-up appointment with him for 10/21/05, the following Friday. That was when he told me the results of the biopsy resulted in positive for Multiple Myeloma (MM) IGG (the most common strain). In the hospital, both Dr. G. and Dr. M. (the hematologist/oncologist) both explained they suspected Myeloma and that it was treatable but not curable. I still had no clue what I was up against.
During this time in the hospital, I had a phone interview with a Nextel manager. Prior to becoming ill I’d had an interview with a Director, his boss. This was just after the Sprint-Nextel merger. When I was discharged on 10/14/05, I was too ill yet and my right arm was so immobile that I stayed with my son, Adam, and his wife, Stefanie, for two weeks. The first week at his house I was informed that I received a promotion and Mike was my new boss. Unfortunately, I was never able to perform my new job, as I never returned to work as I thought I would.
By November 9, 2005 I started on treatment, which was Thalidomide and Dexamethasone (steroid). The Thal/Dex regimen did its job and it began to attack the cancer cells, but oh did the Thalidomide wear me out! I eventually had to cut down on the dosage because I could not handle it. Within the first month, I was able to move my arm out from my body, as the treatment killed off the plasmacytoma’s (tumors) in my right shoulder. Arthritis or a pulled muscle.ya right. Those other doctors were just plain silly.
In December 2005, just a few months after I was first diagnosed and just one month after I began treatment, my back was hurting like I’ve never experienced pain before. I could hardly move, let alone walk. One day I wasn’t sure I was going to be able to get out of bed. In short, X-rays did not show any problem with my back, but an MRI showed a lesion (tumor) in my Thoracic 8 vertebrate. I had 10 radiation treatments on my T8 and then had Kyphoplasty done due to the compression the tumor caused.
I had a stem cell transplant (SCT) April 4, 2006, but unfortunately it did not produce a remission as SCT’s generally do. It seems every other person I meet who has MM and a SCT get a remission! I’ve met only one lady whose SCT did just as mine: no remission. But, with MM, even a remission is short-lived. This beast MM always returns; the SCT just extends your time a few more years.
By August 2006 I was put on a newly approved drug, Revlimid, along with the dreaded Dexamethasone, and of course a few other medications for prevention or supplementation. I’ve been responding well to this regimen, though from 5/31/07 to 9/12/07 my IGG serum levels did increase by 300. I’ve never had my IGG serum increase like that, only after my SCT when I was not taking anything. I understand my MM is aggressive, so that is probably why my IGG level increased so much and so quickly. When I was first diagnosed, my IGG was 4,670. Just before my SCT in February 2006 it was 1200. In July 2006 it was back up to 3,055. In May 2007 it was 800, and in September 2007 it was 1100.
The type of steroids one takes for cancer break down large muscle mass, just the opposite of the type of steroids many athletes take. But these steroids also kill cancer cells and have some other benefits. My legs have become so weak since taking them for about two years now. Unfortunately, they have caused myopathy severely in my left leg. I can hardly use it most of the time. On 10/11/07 the doctors took me off of steroids due to the myopathy. I’m thrilled, though feeling lots more aches! These steroids also cause eye pressure which can cause glaucoma and blindness. My eye pressure is so high that my optometrist has put me on daily eye drops and 3-month check-ups. Perhaps I can get off of them now that I’m off of steroids.
In summary, that is my MM story from October 2005 to current day, October 2007.
cakassel55
July 26th, 2008 at 5:18 am
Hi
I have just come upon your blog and I have found it very
interesting. My mother has mm, she is 79 and is taking
kimo tablets and a drip to protect her bones. She cannot understand why she is so bad on her legs as the doctors are very happy with her progress. She has
because of her immobility and pain, decided to stop taking her medication. She had been on steroids but not anymore so we (doctors as well) dont know why she is in so much pain. The doctors are trying to come up with some other sort of treatment. No one mentioned cell transplant although maybe her age is a consideration. I would love to know your thoughts on this. By the way I am from Ireland. Terry
August 30th, 2008 at 8:09 pm
Hi,
Sorry to hear about both of your family MM. My son 44 found out in Dec 5, 2007. I was interested in your story especially since I am having some same symptoms as your like the right arm and shoulder pain and other symptoms you described. All blood work looks pretty normal. How did they decide to check you for MM now saying I have it but seems weird about the arm and shoulder pain, x-rays showed same as yours, did they run a MRI?
Just wondering, sure I am fine. Thanks
Sandi Hardin
September 11th, 2008 at 9:37 pm
Hello! I just found your blog and I am glad! I expereinced almost what you describe but didn’t go to the doctor- — -went on a fast and have been treating myself with herbal remedies! I was thinking I must be going crazy—- I just turned 48 it shouldn’t be this way! I got to where I gained some 10 or 15 pounds back and I even had a few weeks where my bones do not hurt but now it is all coming back! I am currently working in Korea and scared I too may have MM!! I have gone to a Traditional Chinese hospital here and they did blood test— my RBC are all stacked on each other in a smear test! He says I need total rest a away from stress. Ya right— I am on a big project as the engineer manager! Anyway the Traditional hospital did acupuncture which is what I was using in Germany for Pain so I will go back and have them check my blood again and get some more acupuncture!
What else should I request to look at in my blood to know what is going on!! I am sure I can find it all if I look but I think I really am scared and just had to write in after seeing you have gone through what I went through! I also was taking homeopathic drops for what they said in Germany — maybe I had a parasite due the sudden and drastic weight lose and I couldn’t eat anything without hurting more or maybe I was just hurting ! Anyway it turns out I found an english translation on the drops treatment and this was used for all forms of cancer!! so maybe that helped me get some weeks of pain free time! I sure would iike to have it again and to think clear again!
Ok please write if you get time and tell me what I should check on my trip to the hospital! I need to have some translations ready in Korean!!
September 11th, 2008 at 10:10 pm
This is for Denise,
What you’re describing sounds like rouleaux formations, where the red blood cells clump together to form what look like stacks of cells. I’ve had that a few times. My doctor wasn’t very concerned about that in itself.
It’s hard to say what tests you should have, but to totally rule out myeloma, you should have a bunch of different blood tests and possibly even a bone marrow biopsy. Take a look at this page to get an idea of what’s done: http://myeloma.org/main.jsp?type=index&id=48
September 14th, 2008 at 4:18 pm
Hi, Beth, as part of a college course, we had to find a blog website on something we were interested in. I was interested in multiple myeloma as my mother had it (she died in 1990). At that time, there was very little information about it and not much to treat it.
Like you, her and I were very acitve. Walked 3 miles a day. Her symptoms started with back problems that kept her from walking. Xrays did not pinpoint the problem. Only when she had an MRI did it lean in the direction of a diagnosis.
I will probably be writing to you again soon with more questions.
Take care.
September 14th, 2008 at 4:19 pm
sorry Cindy, in an earlier e-mail called you Beth. Guess I was thinking about my friend Beth at the time.
September 18th, 2008 at 3:07 pm
Cindy,
I am 49, live in Italy and was diagnosed with MM stadium III a, BJ end of May. My bones were seriously affected, I had back pain for several months and waited too long to see a doctor, never thought about this kind of problem. They did in July Kyroplastic on 5 vertebrea, now I can move much better. I am also on THalidomid (200mg) and Dex since June 6th. Am waiting for my first SCT probably in November. Blood results are quite good yet. I also try to move and be active, despite the side effects of Thalidomide (tired, tired, tired) and the steroid affects the muscles. But even it it is tyring, when I am active I feel better.
Try avoiding to eat carbohydrats when you take Dex.
I don’t eat any sugar or sweet stuff at all, no fat, little meat most proteins, fruits, vegetable, fish etc.
It seems to help, some days were it not for the side effects I could think, hmm what was there wrong with me? I have two small kids 3 and 5 and need keep up normal life, this might help, I know it will be worse, but I want to keep up, I only wished the doctors were as determinated as I am,
I will follow your story,
don’t give up and stay strong, there are lots of other options now and in the future
sergio
October 29th, 2008 at 9:59 pm
I also have MM. I spent 6+ months being misdiagnosed and patronized by a doctor who thought I was a “drug seeker.” It wasn’t until I suffered an excruciating compression fracture (and she told me to go home and take Aleve!) that I finally gave up and changed doctors. The new doc had the correct diagnosis in less than a week. (Details at my blog if you’re interested.)
I think the moral of my story is: FIND A DOCTOR WHO BELIEVES YOU. So often, if you complain of fatigue, they automatically conclude “depression.”
Best wishes to all my fellow MM warriors.
November 20th, 2008 at 12:23 pm
. Hi Cindy,
I read your story and I’m very sorry. Just this past year my uncle was also diagnosed with MM. It is a very scary thing. I am contacting you because I am a senior in high school, and I’m doing my senior project on MM. I’m fallowing him through his process of having MM. I would appreciate it if you could contact me back by e-mail. I just need some advice for my family and what to expect.
Sincerely Nevada
December 16th, 2008 at 6:43 pm
Cindy,
Thank you for sharing your journey with us. Prior to March 2008 I hade never heard of MM. My cousin, 33, was diagnosed with it after a sore would not heal. She has decided to go the natural route & thank goodness has found some success. It is good to hear of others whose struggle continues.
Thank all of you for posting…amb
March 28th, 2009 at 2:13 pm
Hi. I am writing about MM because my wife died of it 10 yrs ago, and I had a high grade PIN of the prostate ( a serious precancerous cell condition that results in prostate cancer 70% of the time within 2 yrs). I discovered it Jan 3, 2003. I cured the condition and after 4 biopsies I have NO traces of PIN ! This is after the Urologist said there is no cure………aahuhh.
I want to tell my surviror story to give people hope ( I first told my story on Margaret and Beth’s blog. I have read MUCH and discovered some helpful things in addition to my first writing with this thing called cancer since writing about it over a year ago..
I have tremendous discipline number one. I ate ALL organic food, juiced daily ( organic green vegetables like cauliflower, brocchli, red cabbage, celery, apple; to add taste). I stopped eating red meat; ate organic turkey and chicken and fish. Took lots of organic ground flaxseed. Drank pomegranite juice and Aloe Vera juice. After several years took tumeric/curcumin…….good things started happening ; lost 30 pounds, blood pressure went to 102/60, tryglicerides 85-90, CRP (C reactive protein count .02, etc). A C reactive protein count below 1 is a good sign…….it means “low ” inflammation which means no cancer. After this I started reading more and more and came upon the Budwig Diet ( a woman who is a 7 time Nobel Prize candidate). She was able to successfully cure 1st, second, and third, and 4th stage cancers 90 % of the time…..an absolutely brilliant woman. I then started taking the Bud wig Diet and still do. Next I learned about the McCabe oxygen therapies and stated doing this as well. His book and information within spoke to some of the same concepts as Budwig.
Here is my point. Both McCabe and Budwig agree most people have a severe deficeit in the balance of Omega-3 and Omega -6 fats. Why is this important? We eat processed fats (cookies, potato chips, crackers, cake, etc.) If fact our cells are a virtual garbage can collection of toxins that disrupt the functioning of cells in our body. due to “processed fats”. The processed fats cause an electron that surrounds the cells to deteriorate and will not premit oxygen to enter the cell due to our poor eating habits. Eventually cells become dysfunctional on a large scale and with the conditions that emerge, permit viruses, fungi, parasites, you name it, to increase causing all kinds of diseases like multiple scherlosis, asthma, parkingston disease, diabetes, cancer etc.
The only way to get rid of this garbage is for the oxygen to return to the cells and restore the electron surounding the cell thereby oxidating/killing the cancer , fungi, parassites etc. in the cells. I started thinking that I may have inadvertantly caused this to happen when I rid myself of high grade PIN. I got on an ALL ORGANIC diet whereby no processed fats exist!!The doctor said there is no cure ( doctors are the last to know about nutrition). Budwig says a mix of organic flaxseed oil ( high in Omega-3) with low fat organic cottage cheeese will enable the cell to repair itself thereby enabling oxygen to return to the cell ( cancers worst enemy). The same with Ed McCabe’s thoughts, by using hydrogen peroxide ( 3% diluted) with drops/or spray mixed in distilled or purified water , oxygen is rushed to the cell and repairs the cells , which in turn destroy disease including cancer. This insight should be helpful to many of you. I found four testimonials whereby MM was eradicated using the Budwig Diet. There was also numerous other cancers that were cured ( pancreas, liver, lung, brain tumors, prostate, many in 3rd and 4th stage after taking chemo and radiation that recovered). I was so impacted by the reading I believed it was important enough to inform other readers about this. If you have questions or want to contact me about more information please fell free to do so at earlkielley@aol.com. I would also be happy to email the MM testimonials who overcame MM. I know the fear that grips people with the devasting news about MM or any other cancer and truly want to provide information about success so people can perhaps apply some of these concepts and win!!Sincerely, Earl Kielley
March 30th, 2009 at 11:48 am
Hey Cindy,
I was 50 like you when diagnosed w/ MM. Mine was smoldering MM in 2006. I was diagnosed with MM the summer of 2008. I was reading your blog. I am on Rev/Dex. I have the same thing going on in my left leg that you had. I am going to the DR today make sure it isn’t a blood clot. Neuropathy is not very common w/ MM. However, I’m finding that not to be the case.
Hope everything is fine for you.