<<< Gayle holding her first grandchild, Zack, having achieved one of her most important goals.
1947 / Class of '93 / Type: Kappa / bone involvement, tandem transplant, importance of being treated by or consulting a Myeloma expert / Updated: 10/00
I am Ron, Gayle's husband and her primary caregiver. We live in Florida. Gayle was 46 at the time of diagnosis - a little over five years ago. She was finally correctly diagnosed in August 1993, Stage IIIA kappa with lytic lesions in the skull, left scapula, and on a few vertebrae.
Gayle's father was an officer in the Air Force when she was growing up, and they lived in numerous states. Places of note that I think could have had some bearing on her MM include Albuquerque, NM in the 1950s, when the White Sands nuclear testing was going on. She also lived in Japan from 1957 until 1961. While in Japan, Gayle was bitten by a type of red bug (booey bug) that burrows under the skin. Her leg still itches to this day where she was bitten. Gayle also lived in Tacoma, WA and Duluth, MN, in close proximity to paper mills, from 1961 until about 1966.
Gayle's health history was rather unremarkable as a child and for most of her adult life. Other than gallbladder surgery at the age of 20, she had three miscarriages after the birth of our son, Nicholas. She was using the "coil" for birth control at that time (can't remember the exact name, but it was the subject of many law suits and was later taken off the market). We believed that it was the cause of her first miscarriage, if not all of them. Gayle also had allergies that seemed to become worse after 1979. She contracted the herpes B virus about that time. It would flare up as a sore on her mouth whenever she was under a lot of stress or in the sun for any length of time. There seems to be common thread among MM patients with regard to the herpes B virus and shingles. That may have been one of the first symptoms of MM for Gayle. After the birth of our daughter, Lindsey, Gayle's allergies seemed to get even worse. Whenever she would eat at a fast-food restaurant, her face would become flushed and warm almost immediately and stay that way for approximately an hour.
Gayle is fair-skinned and was sunburned many times during her teens and after we were first married 29 years ago. On an Alaskan cruise in 1991, her nose became sunburned and did not heal properly. She had the same problem the previous year, but medication seemed to help at that time. In November 1991, a biopsy was performed on her nose. The results were suspicious (cannot remember the details) and she was sent to a rheumatologist. |At first, he thought she might have lupus, but after several tests, she sent her to an oncologist who performed her first bone marrow biopsy. He said they were looking for MM, but the results were inconclusive at that time.
In looking back at her records now to do this survivor story, I see where one of the ACRC doctors noted that Gayle was diagnosed with MGUS in February 1992. Neither Gayle nor I can remember anyone giving us that definitive diagnosis. We looked up every other diagnosis mentioned in a medical book we own, so we feel certain that we were not told that name. The first oncologist was seeing her every six months to follow her. This was likely when she had MGUS.
In February 1992, Gayle was making the bed one morning and felt an excruciating pain in her back. I took her to the emergency room and after X-rays, she was told it was probably back spasms. She was given pain medicine and told to stay in bed for a few days.
Gayle was involved in an automobile accident in about April 1992. She had a head injury and her muscles did not appear to be healing. Normally, her chiropractor could manipulate her and she would feel better. She began to have migraines and there was talk of soft tissue damage to her muscles. She had several MRIs of the neck and head, but to our knowledge no lesions showed up. She continued to experience pain for almost a year and went to physical therapy, had MRIs and C-T scans, massage therapy, and even saw a pain management therapist. No one suggested a blood test during that time. Her family doctor finally said he thought something other than the car accident was wrong and suggested she see a different oncologist. We both believe the accident helped mask the MM symptoms and may have somehow accelerated the disease. On the other hand, maybe we would not have discovered it until too late if it were not for the accident. God works in mysterious ways.
Oncologist #2 run numerous tests and did a BM biopsy. He told Gayle he believed she had MM, but couldn't say for sure until all the tests were back. The agony she went through for those few days waiting for the official word cannot be adequately described by me. I was probably in a little less agony because I am the die-hard optimist and truly doubted she had a life-threatening disease until he said those words on that "particular life-changing day." I am not even sure we really "heard" or understood much of what we were being told. We were just numb and his words seemed to just go right through us, barely being absorbed. (We suggest you take a mini cassette tape recorder to future doctor's appointments. The doctors normally do not mind, and it is a huge help being able to play the tape back later to clarify information. Be sure to ask the doctor's permission each time, but we have never been refused.)
Gayle was also having difficulty with her menstrual cycle during that time. She was passing large clots and hemorrhaging every month. At the time she was diagnosed, she required two units of blood immediately because she was extremely anemic. After she was diagnosed, her gynecologist gave her a shot to stop her periods, but it only made matters worse. He finally did a form of D & C in his office to try to stop the bleeding and put her on birth control pills. (As some of you know, one of the side effects of birth control pills is blood clots.)
Gayle's second oncologist started her on VBMPC (Vincristine, BCNU, Melphalan, Prednisone and Cytoxan) chemo once a month. He also enrolled her in a protocol for Procrit to improve her red blood cells. Gayle gave herself the shots, which worked remarkably well. Thank God for the protocol because the injections are extremely expensive, as some of you well know.
Gayle's numbers before the chemo was started were M-protein - 6.9, IgG -7580, IgA - 55, IgM - 49, 50% plasma cells in her bone marrow biopsy, and she had several lytic lesions which were already damaging her bones. She was diagnosed Stage IIIA kappa light chain. She was never given Aredia during the 12 months she underwent chemo to the best of our knowledge. Be sure to ask for Aredia almost immediately to strengthen the bones. It may even have some positive effect on the MM.
The chemo did not cause Gayle to lose much of her hair. She would get the treatments once a month on a Friday afternoon and did not feel too bad for the rest of that day. She would be very sick all day Saturday, even with the medicine to help control the nausea. It would sap nearly all her energy for about 12 hours. On Sunday, she would recover dramatically. She would then return to work on Monday morning. I don't think she missed a full day of work during that entire year. She would schedule her treatments on Friday afternoons and just miss half a day of work once a month. I have really admired her strength, courage and stamina from the beginning.
We may have made a decision that seemed right at the time for Gayle, but later proved to be a problem. It is important that the patient maintains control of his/her well being. Somehow Gayle just couldn't stand the thought of a port, so she took 12 rounds of chemo without one. Unfortunately, they now have very poor access to her veins as a result. On the other hand, it turned out later that almost every time she required a port, she developed blood clots from it. So who knows. Most patients do not have the problems she did and are thankful for the port.
We have a wonderful base of family and friends for support, which is crucial. Gayle's sister, Kitt, and her husband, Jimmy, made many trips from Georgia to be with us while she was undergoing chemo. We would arrive at the oncologist's office and they would be sitting in the waiting room. It is an eight hour drive each way from their home, so they would have to leave very early. They "made a mission" out of being there for us, which was truly appreciated. The entire family has been very supportive and has helped out in many ways. The nurses and hospital staff have always been amazed at the number of visitors and cards that Gayle has received each time she has been in the hospital.
After a year of chemo, Gayle's second oncologist wrote "remarkable response" and he pronounced her in CR (complete remission). Complete response is probably more correct. Her M-protein had disappeared. Her IgG dropped from 7580 to 1398 and her plasma cells were only 3% in her BMB in November 1994. We couldn't have been happier and the oncologist said "if ever there was a chance for a remission, she would be a candidate for it." Her counts that day were: WBC-5.1, RBC-3.72, HGB 12.1, and PLTS 91,000.
We cannot change history, but I am adding this next information. If it helps even one person, we will feel like we have contributed something worthwhile.
On at least three occasions, we questioned the second oncologist about cancer centers where bone marrow transplants were performed. On all three occasions, we were told, "the treatments are so barbaric and toxic that they are worse than the disease," or "the mortality rate is too high to consider it," etc. (not true). Also, Gayle was told that she was too old to be considered.
After approximately a year of the VBMPC treatments, the oncologist announced he was giving up his practice. He continued to give Gayle chemo until October 1994. It was interesting that he wrote in his final notes that "he had fully discussed transplant options with us and suggested it might benefit Gayle." She did so well with the 12 months of chemo, that he now felt she would probably be a good candidate for a transplant. In hindsight, we would not have let anyone treat her for a year with VBMPC, which badly damaged her bone marrow. It affected her treatment options and stem cell transplant outcome in a negative way. Her platelets never recovered satisfactorily after the first transplant due to the previous chemo damage. If we had it to do over, we would have gone to a center of excellence for MM within three months after starting chemo, once she was stabilized. It was very disheartening to learn in Little Rock that more than three months of VBMPC treatments badly damages the bone marrow.
Many local oncologists have treated few, if any, MM patients, because the disease is rare. Get a second and even third opinion, if necessary, early in the process. No matter how well intentioned the local doctor might be, he may not have the latest information regarding your disease. Education regarding MM on your part will pay off.
Gayle's third oncologist had treated several other MM patients prior to Gayle. He immediately referred us to an MM specialist at ACRC (Arkansas Cancer Research Center in Little Rock). Even though Gayle was in remission when he first saw her, he knew that the disease would eventually come back. He said he would work with any specialists we chose and would follow their recommendations.
Gayle was first seen at ACRC in April 1995. She underwent the usual battery of tests. She was in CR so they placed her on pulse Dexamethasone - 40 mg per day for 4 days once a month. She was followed by the third oncologist monthly during the entire two years she was in remission. Some side effects experienced by Gayle were flushing of the face, nervousness, back spasms, weight gain, and difficulty sleeping at night. Overall, she seemed to handle it very well.
A few months after her first visit to Little Rock, Gayle returned to collect stem cells which were frozen for a future transplant. The Quinton catheter required for apheresis was very uncomfortable the entire time it was in. There were several protocols being used, but Gayle received only GC-SF shots to mobilize the stem cells. After collecting for four of the five scheduled days, they quit because the quality and quantity were not good. Fortunately, they harvested enough stem cells for one transplant. Others who were collecting at the same time harvested enough for two or three transplants in just two or three days.
Within a few days after returning home, Gayle was hospitalized for major thrombosis (blood clots) of the left subclavian vein. That is a potential side effect, which Gayle has experienced often. We returned to ACRC every six months for two years. While staying at a motel in Little Rock, we would compare notes with others being treated for MM. It was very reassuring talking to others with similar circumstances, although each disease and treatment was unique to that individual.
In April 1997, Gayle's IgG and M-protein numbers had progressed again: IgG-2402, M-protein-1.3, and other numbers were showing signs of increasing. In June 1997, she returned to collect stem cells again and was going to proceed to her first PBSCT (stem cell transplant). This was the first time I had not gone with her (her sister and brother-in-law were there for the first few days, then her father came to be with her.) Remembering how uncomfortable she was the first time, we didn't want them to place the catheter until the morning they were going to collect. Unfortunately, it was placed on Friday and by Saturday she was feeling poorly. She made several trips to the Chemo room because she was running a fever and was in a great deal of pain. Her sister and father called me Sunday night because they were concerned about the way she felt. When I talked to her, she could barely carry on a conversation and I knew things weren't going well. I caught the first plane out of Florida on Monday morning. By the time I arrived in Little Rock around noon, the doctors had determined that the catheter was infected and needed to be removed. Her fever had progressed and she was shivering badly. With a blanket around her, she sat in the waiting room for approximately 45 minutes waiting to have the catheter removed. She was actually becoming delirious, which we didn't realize at the time because we thought it was the pain pills taking effect. By the time they got her into the chemo room, they were in a major effort to save her life. Her face became very hot and red on one side She kept trying to climb out of the bed. The doctor she had seen upstairs arrived and they tried feverishly to get her temperature under control. The nurse told me when it was over that her temperature had reached 106 . Another doctor came into the room and inserted a triple lumen catheter into the groin area. They needed access to administer the antibiotics.
I didn't know exactly what was going on with Gayle at that point, but I was extremely scared. When the rescue was over and her temperature was headed down, I learned she had become septic (infection from the catheter had entered her blood stream) and, of course, the heart was pumping the infection into her entire body.
She was admitted to the hospital and I felt like we had dodged a bullet. Ironically, it wasn't over. Barely 24 hours later, she had a second temperature spike. This time a team of nurses packed her in ice to control the fever. This rescue lasted approximately 1-1/2 hours. I knew from the first episode, she was in major distress the second time. Finally, they broke the fever and transferred her to ICU for a few days. One of the nurses told me later that they were sure she was going to "code," hospital slang for the stopping of the heart, and that her temperature had reached 107 at one point. She seemed to have some problems with her short-term memory for awhile, as a result of those two ordeals. We dodged a second bullet in less than 24 hours. A few days later we returned home.
Nine days after arriving home, Gayle was hospitalized for major thrombosis of the right femur area where the emergency port had been placed during the rescue - another blood clot from another port. Most patients do not experience these problems, but this seems to be a pattern with Gayle.
While being treated for the blood clot, she was getting heparin shots in the abdomen to dissolve the clots in her leg. Somehow her blood got too thin and bled through the rectus sheath into her abdomen. This was very painful. They stopped the heparin shots and had to insert a "Greenfield Filter" to catch any blood clots that might break loose and prevent them from going to her lungs. It is similar to an umbrella with no outside covering - just a skeletal part of the umbrella that opens up after insertion to catch any clots. She was in the local hospital for approximately six weeks and was unable to walk without the help of a walker when she was discharged. All in all, not a good summer.
We returned to Little Rock in September 1997. Gayle successfully harvested stem cells, and underwent her first transplant. She was in the hospital for six weeks and had a very difficult time (probably due in part to her poor health upon entry). Her recovery was longer than normal and her platelet count was only 11,000 when they discharged her from the hospital. Against the doctors wishes (but true to Gayle's wishes), we drove home from Little Rock in time for our daughter's 18th birthday. My mother had flown down from Wisconsin and was a big help during the month she was there. Gayle needed someone with her to help her.
In February 1998, Gayle returned to Little Rock for her second transplant. Her father and his fiancée stayed with her the first two weeks, and then her sister arrived to relieve them. The transplant went smoothly the second time (only 10 days in the hospital). By the time I was scheduled to relieve Kitt, she and Gayle were on their way home (a total stay of four weeks).
At her checkup in April 1998, Gayle was again in CR. The doctors suggested several maintenance programs, but she was no longer responsive to Dexamethasone and her platelet count was too low for interferon. We decided against the CDEP protocol (Cytoxan, Dex, etiposide and platinum) because she felt she needed a break from everything.
In July 1998, we met with Dr. Barlogie and he encouraged (strongly) Gayle to take part in the CDEP protocol. He had a fine needle aspirate performed on one of the lesions on Gayle's vertebrae to determine how Gayle's DNA was affected by the MM (cryogenic abnormality). They were looking for some chromosome abnormality - deletion of 13 and translocation.
On August 4, 1998, Gayle began 96 continuous hours of chemotherapy. It seems to have gone okay. She has developed diverticulitis and her platelet count was very slow to recover again. On October 5, 1998, her IgG was 1130, IgA - 120, IgM - 103, and M-protein dropped from 1.0 to 0.1. Her platelet count was 117,000. All of her numbers were in normal ranges.
We will return to ACRC at the end of October. We are concerned about total toxicity and must decide whether to continue the protocol, try something different, or do nothing. There are no easy choices. Educate yourselves as best you can, so that you can make informed decisions regarding your treatment, predicated on your quality of life issues.
Gayle's short-term goals were family-related and very beneficial to her. She was determined to attend our son's graduation from college as an industrial engineer, and to dance at his wedding later that same year. She did. She also attended our daughter's high school graduation, celebrated her 18th birthday, and helped her prepare for her first day in college. She always wanted to be a grandmother, but felt that was not going to happen after she was diagnosed. Our first grandchild, Zachary Todd, was born on Mother's Day and she was at the hospital to welcome him. We are setting new goals, which we are sure she will achieve.
Every day we thank God for the time we have had together and all our blessings. May God bless each of you and your loved ones. Keep up the good fight and maybe we will all be around to celebrate when they find the cure for MM.
October 1998: We just returned from a check up visit at ACRC in Little Rock. Gayle got a good report. All numbers in normal ranges and just a trace of M protein. We had the discussion as to whether or not to continue the CDEP. She was in CR when we began it in August. Unfortunately, it all seems rather theoretical. I was hoping for hard proof but should have known better. Gayle now has a couple more opinions but ultimately she must decide. I am trying hard not to push my opinion on her. Because she has some genetic disposition that showed up one time, Dr. Barlogie wants her to continue. It is apparently something about one chromosome, that patients with that characteristic, tend to relapse sooner. Since Gayle has no more stem cells as a safety net, this is obviously a tough decision for her.
We were fortunate at the Hilton support group meeting to have in our group the first MM patient that Dr. Barlogie put on Thalidomide in December of 1997. He shared that portion of his story with the group. He was literally on death's door step. Eighty percent cellularity involvement when he started on Thalidomide. I believe he said it climbed to as high as 95 percent right after he started. Eleven months later, at the time of the support group meeting, his cellularity was zero percent and he looked remarkably good. He is writing a book about his total MM experience. I believe he said he had an auto and an allo transplant along the way. I believe he was dx about 8 years ago.
So, it sounds like the Thalidomide treatments could hold some real promise for the future treatments of relapse MM patients and maybe first line treatments.
I thought you all might be interested in the above information. I am trying to hook him up with this group. I hope he didn't mind my sharing some of his information. It was very interesting hearing his summary story.
October 2000: We decided NOT to continue the CDEP protocol for quality of life reasons and a platelet problem that was ultimately blamed on Valtrex, thanks to the help of June Brazil. June alerted us that although very rare, Valtrex has caused platelet problems for some patients. As soon as Gayle's oncologist stopped all her medications in 1998, her platelets recovered and all her medications were restarted one at a time except the Valtrex.
Gayle continued on Aredia only and enjoyed a good quality of life. On March 1999 about a year after her second transplant, her IgG started to climb along with her Serum M and it became clear over the next 3 months that she was no longer in remission.
By July of 1999, ACRC wanted Gayle to do the micro-allo using her brother as a donor. We didn't want to use that option yet, so we opted for trying Thalidomide. She started at 200 mgs on 8/14 and increased it to 300 mgs 30 days later. After 2 months it didn't seem to be working for her. Her IgG was 2402 and her serum M was 1.0. Although her numbers did not indicate it, the disease was wreaking havoc with her bones. She had a compression facture of one of her vertebrae and shortly there after two broken ribs.
In December 1999, it was suggested she add Dexamethasone to the Thalidomide even though she had become resistant to Dex because she was on it for two years while she was in remission from 95 to 97. After adding the Dex, her IgG dropped from 2345 to 1241 and finally dropped to 1160 on 2/14/2000. Unfortunately, the success was short lived and by March 2000 the numbers were climbing rapidly and by July 2000 her IgG had reached 3020. A trip to Little Rock was required again.
Due to a snafu, the transplant approval had not been requested timely before our trip to Little Rock and Guardian Insurance denied the micro-allograft as EXPERIMENTAL and INVESTIGATIONAL while we were there in July 2000 to do the transplant. That is insurance lingo for EXPENSIVE. We had to return home and hire an attorney to get the care we knew we were entitled to for Gayle.
Gayle's numbers were now advancing rapidly and it was clear some intervention was REQUIRED due to the insurance company's stance of DENIAL.
Gayle was admitted to the hospital on 8/14/2000 for 4 continuous days of CDEP chemo. She had very protracted recovery of the platelets again. Finally by 9/1/2000, her platelets climbed to 17,000. Again for no known reason, they plunged to 4,000 by 9/3/000. She received 3 bags of platelets over the next three days and the platelets numbers never increased at all from those transfusions.
So like she had to do in 1998, all her medications were stopped again and this time, HLA matched platelets were ordered and immediately her platelets began to rise to 32,000 and are now up to 149,000.
Ironically about the time her platelets were at 4,000 for three days, the insurance company notified us they had REVERSED themselves and had APPROVED the micro-allograft.
A family doctor suggested it is possible the insurance company thought Gayle might not recover and approved the transplant to keep themselves from being sued in case she died. We can't come up with any other reason, since they put the ball in our court for a formal APPEAL. Our attorney had not sent them a letter yet, so the doctor may unfortunately have been correct.
Well, as I previously said she DID recover thanks to God and lots of prayers and some good doctoring to go along with it. We are in Little Rock now, in October 2000. She is about to be admitted to the hospital for a micro-allo using her 6 of 6 match brother as a donor. She is scheduled to be in Little Rock for 3 months to accomplish the transplant.
Hopefully, her next update will report her great success of the upcoming transplant.
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