Erie, PA; firstname.lastname@example.org
1950 / Class of 2003 / Type: Kappa light chain / Kidney failure, transplant / Died 11-28-07
In March of 2003, I had regular blood work and was found to have type 2 diabetes. All the rest of my labs were within normal ranges. I decided to try to lose weight to control my blood pressure and diabetes. I was able to lose 30 lbs over 6 months by watching the amount of carbs I ate. I went off all medications. I started to have stomach pains, and went to see my family doctor. He put me on some acid reducing meds for 3 weeks, and when they weren't effective sent me to a gastric specialist who ordered a colonoscopy and blood work. This was in early December. By that time I was experiencing a lot of fatigue and pain.
The day of my colonoscopy, they told me that I was severely anemic, hematocrit of 22, and creatinine of 7.2. I was in total renal failure. My family doctor sent me to a nephrologist the next day. The kidney doctor ordered a lot of specialized tests to try and diagnose or rule out diseases. Nothing stood out. Except for the labs listed above, all the tests were in the normal range. The kidney doc said that whatever was wrong was very weird. Boy, was he right. The week before Christmas I was in so much pain in my right shoulder, left hip and right thigh that my doctor admitted me to the hospital and placed a temporary catheter in my groin and did 5 days of hemodialysis. This removed the poisons from the blood and relieved the pain. I also had a kidney biopsy. The results stunned everyone: it was positive for MM. The local oncologist saw me in the hospital and said that he felt that the biopsy was not correct because I did not fit the profile and my labs didn't reflect MM. He did a bone marrow biopsy which did confirm the MM.
I went to the Cleveland Clinic and saw Dr. Hussein who heads up their MM research center. He directs my treatment but it is administered here in Erie at our local cancer center. I am now on my 3rd dose of Cytoxan and Decadron. I get it every 3 weeks. I have some nausea, thinning hair and vision problems. Recently I also have a lot of pimple type lesions in my scalp. Due to the renal failure I am also on peritoneal dialysis 4 times a day.
I have lived most of my life in PA except for a short time in North Carolina and Tennessee while my husband was in the marines. We do live about 60 miles from a nuclear power plant but there has never been any type of exposure that I am aware of. I have a history of severe migraines. My mother was one of 10 children. Of them, 6 have died of cancer and 2 of the remaining are in remission. My mother died at age 32 of kidney failure.
I have been married for 37 years and have 4 grown children, all in good health. We now have 3 grandchildren. The 13-year-old has had type 1 diabetes since she was 2 years old. For the first 30 years of marriage, I was a stay-at-home wife and mother. When our youngest child graduated from school, I went to school and became a nurse. I work in long-term care facilities. When I was diagnosed, I had x-rays and a bone density test. Thank goodness, the results showed no involvement of the bones. We still are confused as to why the MM caused my kidneys to shut down before it affected the bones. I guess I should consider myself lucky. If I had not gone to my family doctor about my stomach pain, and if he had not been on top of everything, it could have been much more advanced when it was finally diagnosed.
I am attending a local support group for blood-related cancers since there are very few MM groups. I would encourage everyone to seek out a support group. The encouragement you will receive will help you through the rough times. Probably the hardest thing for me right now is the fatigue. It is also difficult when people look at me and say how good I look. This illness affects you on the inside, where it can't be seen. I will return to Cleveland clinic the first of May. At that time I hope to start the procedure for a BMT.
May 24, 2004: On May 4th I returned to Cleveland Clinic to see Dr. Hussein. He ordered a 24 hour urine to determine how the Cytoxan is affecting my MM. Today I received the news. At the time of my diagnosis my protein level was 4.8 and as of my 5th round of chemo last week it is now 1.4. I will continue with 4 more rounds. This is done once every 3 weeks so it will take me into the middle of August. Then we will do another 24 hour urine and go from there. I am hoping for a kidney transplant one day but I am told that I will need to be in remission for 2 years before I will be placed on a transplant list. Remission is considered when the protein level is at 0.
As in the past the biggest problem I am having is with the fatigue and now some depression. I think they go hand in hand. The other side effects are a nuisance but there are medications for them and they come and go but the fatigue is there every day. Too bad they don't have a pill for that. I do take Procrit shots and am at the max for that but my hematocrit hovers between 26 and 30. I understand from the members of my support group that the fatigue gets better but never goes away after the chemo ends. You just need to learn your limitations and allow for them.
Aug 20, 2004: I went to Cleveland Clinic and saw Dr. Hussein. He was not happy with the labs that were taken that day and the fact that I have had to have 3 blood transfusions in the past 2 months. My hematocrit has been as low as 21 even though I have been on Procrit 60000 units a week for 6 months. He orders the type of treatment there in Cleveland and the doc's here at our cancer center in Erie administer it. He had a bone marrow biopsy done that day to check on the exact amount of cancer cells. Yesterday we received the good news. My results showed only 0.2% cancer cells. That is as close to a remission as you can get without actually being in a CR. He is going to treat me as if I am in REMISSION. I will be on 50 mg of prednisone every other day. I will see him again in 8 weeks for more tests to see how the med is working at keeping the cancer down, and go from there.
I will still continue on my dialysis, hooked to a cycler for 9 hours every night. That isn't fun, but hey, I'm alive. According to what I read on the net, only 25 to 35 % of people reach remission after their first round of chemo, so I am one of the lucky ones. The length of the remissions vary, so it will be nerve-racking waiting for test results every couple of months. I am looking forward to being off the chemo. I never completely lost all my hair but it got very thin and would break of at different lengths. Every time it broke I would get it all cut to match the shortest spot. The top and sides are now about 1/2 inch long. I've learned to adapt to the nausea and only actually vomit a couple of times a month, although it usually lasts all night. I am cold most of the time and I blame that on the anemia. When I get really cold I ache in my arms and legs so bad that I shake and feel sick to my stomach. The fatigue is still what bothers me the most. I am hoping now that I am off chemo all these will go away. Of course, now that I am on maintenance prednisone, that can cause a whole new set of side effects. I would appreciate hearing from anyone who is on the same treatment as I am now.
July, 2005: I saw my doctor in Cleveland the end of May and I am still in remission. All meds are the same. I do not return to him until fall. At that point, I will be one year in remission and they will start the work-up for a kidney transplant. The remission must last for two years before I can get a new kidney. The work-up takes almost a full year, which is why they start at the one-year point.
March, 2006: Since my last update I have been continuing on the same meds. Last October, I started the testing for a kidney transplant. I had to have labs, mammogram, EKG, ultrasound, and of course my personal favorite, a bone marrow biopsy. Everything is still fine and I am in remission. My husband and daughter were tested to be donors and by some miracle they both are a match for me. We have chosen my husband to be the donor because he is older and will only be able to donate for a few more years. That will leave my daughter in case I need her kidney later. My husband is now having his tests. We go to Cleveland on Monday for an entire day of tests. A second day of tests is scheduled for the end of the month. He is in good health so I don't expect any problems with his tests. All the doctors we meet with remind us that the transplant could cause the Multiple Myeloma to return, but also told us that my life expectancy is better with a transplant.
June 19, 2006: Last Tuesday I went to the Cleveland Clinic and received a kidney transplant from my husband. It took about 5 hours for the surgeries to take place and so far everything is doing wonderfully. My creatinine level dropped from 7.0 on the day of surgery, to 2.5 the day after and was 1.1 three days after. That is in normal range. I am very surprised at how good I felt all over, except for the pain. The doctors say this is normal: Dialysis can only remove so much of the poisons and messes with hormone levels so when it all returns to normal you are surprised. I didn't know what in my sign and symptoms was caused by the kidney failure and what was caused by the cancer it self. It will now be a day-to-day learning experience to see what changes. I know that I already have more energy and don't sleep near as much. I no longer need to take Procrit and my assorted renal meds but do have more meds to take to insure the new kidney isn't rejected. My husband was only in the hospital 3 days and 2 nights. He was and still is in a lot of pain. They did his surgery with small incisions comparable to an appendectomy. He has never had abdominal surgery so he said he didn't know what to expect. I was in the hospital 4 nights and 5 days. Pain is still bad at times but since I have had many surgeries on my abdomen I knew what to expect. My transplant docs and my cancer doc will be working together to keep my new kidney working and to keep the cancer in remission. If the cancer returns and I need to go back on chemo it can cause rejection. I can't say enough good things about my treatment at the Cleveland Clinic. Everyone who has MM needs to check out all their options and talk to other MM patients and make their own decisions about where to go for treatment. I honestly believe I would not be in the good condition I am in today if I had chosen to be treated locally. It has been 3 years since my diagnosis of MM and renal failure and here I am in remission for 2 years and out of renal failure. By all the stats I should be going downhill not up.
Good luck to all.
**From this point on, the updates to this log have been made by Maryís children.
List of children in order of birth:
Fall, 2006: All went well for mom after her kidney transplant (creatinine levels staying around 1.1), for a couple of months, then after some blood work, word came that her creatinine level was 2.4 and was possibly showing signs of rejection. She had to make an emergency trip to Cleveland Clinic to get a biopsy of the kidney done. The biopsy didnít show any rejection, but the doctors were going to treat it as such. They increased some medications and flushed fluids through mom. Her creatinine came down and stayed around 2.1 (The doctors told her that would probably be her new normal). They rechecked her twice a week and when her creatinine levels started to climb again, Cleveland brought her back in for another biopsy, still showing no rejection and at this point they started looking at one of her rejection meds. It was known for causing a toxicity in the body for some people. The doctors changed that medication to something else.
Winter, 2006: Momís creatinine levels started to climb again and the doctors came to the conclusion that the cancer had become active again. They put mom on Thalidomide, which had some unpleasant side effects, such as numbness in her legs and hands. However it put the cancer back into remission.
Spring 2007: Mom developed a very bad sore throat. She put off going to the doctor because she had to have cataract surgery on her eyes. The high doses of prednisone that she was on had caused cataracts. She was afraid that if she went to the doctor for her throat they may not want to perform the cataract surgery. It took 2-3 months before she could finish her cataract surgeries. She finally went to the doctor about her lesions on her throat. The doctor told her it looked like an infection. He put her on antibiotics. The Antibiotics didnít work, so he scheduled her for a biopsy and the biopsy showed an infection in a gland in her throat. He changed her antibiotics to a different type called Flagyl. This type of antibiotic deals with fungal infections.
Summer 2007: Mom starting vomiting and when she wasnít vomiting she wasnít hungry either. Between those two things Mom lost 30-40 pounds within a couple of months. The doctors in Cleveland did some tests to see if the cancer was back and the tests really didnít show anything, however, her creatinine level had climbed up to 3.8. The doctors reviewed all of her test results together and determined that they had to use the kidney function as a means to determine that the cancer must be active again because this is exactly how things got rolling with MM in the first place. The MM had killed her kidneys originally. They started mom on Chemo. However, mom reacted very poorly to the chemo after only 2 weeks and she had to take a break from it. She then developed a severe case of Shingles from the Chemo. The pain from the shingles was unbearable at times.
Fall 2007: The pain from the shingles got so bad, Mom went to the ER. The doctors changed her medication for her shingles. She still wasnít eating very much and was still vomiting occasionally. She was continuing to lose weight. Cleveland was starting to talk about putting her back on the Chemo again. They said the chemo wasnít typically as hard on you the second time around.
October 2007: Four days after her meds got changed for her shingles, from neurontin to lyrica, Mom woke up and wasnít able to walk without assistance from Dad. He took her to the ER again. The doctors thought it was her medicine that they had changed her to for her shingles, as did the doctors in Cleveland who were always kept in the loop by her kidney specialist here in Erie to make sure that anything he prescribed was conducive with her MM. ( Her kidney specialist here in Erie took over her day to day care as her personal care physician and liaison between Erie and Cleveland) They took her off of the lyrica which, one of the side affects was unsteady gait, because the pain had lessoned significantly and sent her home. 4 days later she still couldnít walk without assistance. She had a scheduled doctor appt that day with her kidney specialist, and the doctor put her in the hospital for dehydration, and general fatigue The doctor ordered a scope to be done to look at her stomach to try to find out why she was vomiting. He found a couple of more lesions in her throat and put her on more antibiotics, Flagyl. He also put her on diflucan (also a fungal/yeast medication), and carafate which is to coat the lining of her throat and stomach to make it easier to heal and keep acid at bay.
She was in the hospital for 9 days. During this time, she attempted to transfer herself to bed side commode which would have been ok but it did not have the rubber sleeve feet on it. It slid out from under her and she fell hitting her head. From that point on her mental status seemed to change, although the cat scan to her head showed not injury from fall, She was unable to voice things as quickly as she had. The doctor finally sent her home with a walker and a bedside toilet and set her up to have a home healthcare nurse and a therapist come to the house. He felt the problems were coming from severe malnourishment. We were given instructions by the home healthcare team on how to care for her and how to provide exercises to try to build her strength back up. The doctor said he was hopeful she could bounce back from this.
For the next month, we never left mom alone in the house because she was unable to get out of bed on her own, let alone walk across the floor. Some of momís children and their spouses took turns staying with mom when Dad was at work. It appeared that she was getting a little stronger but she was still losing weight and still unable to be left alone. Two weeks later she had a follow up with the doctor. The home healthcare nurse told the doctor that she felt that it was time to call Hospice. The doctor wasnít giving up hope yet. He still felt it was a matter of malnourishment but he asked Mom if she wanted him to call Hospice for her and she adamantly said ĎNO!í. So he sent her home with 3 cases of high calorie supplements. We were able to get over 2000 calories a day in Mom, and once again she appeared to be a little bit stronger and she had actually stopped losing weight. But as much as that was good news, we noticed that she was beginning to stare off in space for long periods of time. She was always aware of what was going on when asked. She said she was just listening to us, but it became painfully obvious that she was not able to interact with us as well as she wanted too. We also began to see blood in her stool, which mom was adamant that is was only hemorrhoids, and she would not entertain another hosp visit. However, a week later she couldnít get up again, even with assistance. Dad called the ambulance and we were once again hospital bound.
Mom was admitted to the 6th floor of the hospital for the doctor to run some more tests. Jenn mentioned to the doctor that mom appeared to be holding her one hand funny, all curled up. Jenn could straighten her hand, but before long it would be back in that position. She was also having difficulty swallowing fluids. The doctor ordered a swallow study to be done. Shortly after the swallow study, mom aspirated fluid into her lungs and had to be rushed up to ICU. Jenn called the family together because it didnít look good for mom. Mom spent a week in ICU while the doctors and specialists ran many tests. By this time mom was in a pretty severe posturing position. Mom came in on a Thursday and Sunday evening we found that there was a Mass in momís brain in the cerebellum section. This is the section that controls the motor skills, such as walking. At this point, we didnít know if it was a bacterial infection or a tumor. She would have to have a biopsy to make this determination. This explained a lot of why she was unable to interact as well as talk clearly, use her arms and legs. But she was able to understand everything that was going on. She told us that she wanted to have the biopsy and surgery if it would help. Mom also told Jenn and some other family members that she had accepted Jesus Christ into her life.
Nov 20, 2007 Wednesday: 8:00 pm, We got mom transferred to Cleveland Clinic via ambulance. Dad and Jenn followed the ambulance. The rest of the family was going to go to Cleveland Thursday evening or Friday morning. The ambulance technicians said mom wouldnít speak to them the entire trip. We think she was in so much pain, it took all of her strength to contain her composure. She was always a very composed person.
Nov 21, 2007 Thursday: Thanksgiving morning. Mom could hardly swallow at all and was having great difficulty in speaking. Her posturing became significantly worse and she was unable to move on her own. Her daughter and husband repositioned her constantly to alleviate the pain of the posturing causing her muscles to pull in. The dilaudid she was getting for pain was not able to control all the discomfort. But if she received more it may sedate her and she would not be able to function, she began to have a difficult time breathing, she kept saying that she could not breath, and began a very fast and shallow breathing pattern. A chest x ray showed clear lungs so that was not the problem, Doctors speculated that it was the mass in her brain causing her problems. At this point her husband and Jenn feared the worse and began to call family members warning them of changes. Dad began talking of bringing her home to the house to see her family and say goodbye.
The Neurosurgeons at Cleveland reviewed momís tests and determined that they would have to drill a hole in moms brain to relieve the pressure that was there. Maybe next week they would be able to perform a biopsy. A team of doctors assigned to mom also told her she had some type of internal bleeding, that was very significant, enough so that she needed a blood transfusion. Which she only took as a favor from Jenn and Dad, at that point she didnít feel like she was going to make it longer than a couple hours despite the encouragement from staff. Mom told Dad and Jenn that she ďwanted to go homeĒ. Jenn called the rest of the siblings and told us we needed to get there because she didnít think mom would last long enough to get a transport back to Erie.
We all made the trip to Cleveland and it was then that mom told us she wanted ďto go be with GodĒ. We wanted to bring her back to Erie but we donít think she wanted to make the long trip back. We had her moved to the Palliative Care unit in the Cleveland Clinic where they specialize in dealing with end of life care and all its pleasures and displeasures. We were able to manage her pain level now that it was not necessary to keep her alert in order to keep her respiratory status up. All of us kids were there and there spouses, our father, her husband of 43 yrs and kidney donor, 3 of her grandchildren. Her cousin, who she always called her brother, and our fathers sister and her husband who was a great support to mom all along, more like a sister than a sister in law. After a few days some of the family members had to get back home. It gave the immediate family members some time to spend alone with mom. Remaining was the 4 children, husband and cousin. We remained by momís bedside where we were all able to visit with her and be a family in the same room. Until she passed away on Nov 28, 2007.
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