Olympia, WA / 8-9-1941 / Class of '96 / Type: IgA / Died: 2/8/2000
Where did you grow up? St. Louis MO., Oregon coastal towns, Portland OR. No nuclear power plants - just small - older communities in average or below average (for those years 1940s - 1950s) homes. We currently reside on a farm south and west of Olympia, WA.
Health History prior to MM: Allergic to trees - anything with pollen. Underwent long term extensive weekly allergy treatment over 20 years ago, restarted allergy treatment again in Oct. 1995, MM diagnosed in March of 1996. History of digestive problems. Heavy user of over the counter antacid chewies, as well as prescription medicine - Zantac - etc. Only surgery was for a rectal fissure.
Date of birth: 8-9-41; Date of diagnosis of MM: March of 1996 - 54.5 years old Diagnosis only came about because of pain in her foot. Foot hurt since December 1995 - podiatrists and others x-rayed and found nothing but tried traditional anti-inflammatory, appliances, heat - cold therapy - which didn't work. Last podiatrist listened and observed and recommended blood tests which then disclosed high protein levels. Coincidently the pain spread from one foot to another and prior to the diagnosis, Ellen was almost unable to walk. No lesions have been found in the feet, though they exist in upper leg, upper arm and ribs. The foot pain vanished after the first VAD treatment.
She is being treated by a local Hematologist-Oncologist, an Oncologist in Olympia who is also head of cancer department at Providence St. Peters Hospital.
What are the symptoms of your Myeloma, have they changed? Elevated protein - IgA counts Counts have fluctuated, see historical table of values. There are no bone fractures.
What were your initial lab findings? What changes, if any, have been documented in your lab tests during the course of the disease? The primary indicator used with Ellen is IgA at diagnosis it was 5253 The following table plots the results of every IgA measurement.
What kinds of treatment have you received: chemotherapy - VAD days 1 - 4, 9 - 12 and 17 - 20 and week off: for 2 cycles. Ellen's major treatment (not including Aredia) and IgA results since treatment started are shown in the following table. For a view of over 30 lab tests, since 1996, you can access her detailed lab results from our website.
Aredia (not shown) administered every 4 weeks from week 48 on intervals vary from 3 weeks to 7 weeks or more
During 2nd cycle of VAD (week 5) Trilosec was recommended to minimize 'steroid withdrawal' - it seemed to help but didn't eliminate. By the end of the 6th week, Ellen was bedridden with total exhaustion. At the end of 8 weeks she refused further chemo (VAD) and the doctor agreed and she took another week off. At the end of the 10th week she was starting to get up and by week 11 was up on a normal (?) schedule. Very weak and loss of muscle strength, but up and not bedridden.
During weeks 7 - 10 she felt she had sinus pain across forehead - and was treated with antibiotics - which helped (?). Frankly not sure if these headaches and pains are caused by treatment or are MM caused or are totally unrelated. Steroids (we think) also complicated bowel problems resulting in rectal fissure related problems (prolapse.) The GP was able to help and with prescription ointment, lots of liquids, and FibreCon, this problem has been minimized.
During what I call week 11 , Ellen started new therapy Alkeran 16mg daily for 5 days along with Prednisone 100 mg for 5 days, then 5 weeks off and back to doctor for new instructions. We are currently in 2nd day of new therapy - Ellen unable to 'come down' and was up and active until 05:30 this morning - so the steroid component really works! Ellen started Aredia in week 48 given once every 4 weeks 90mg Ellen stayed on Alkeran/Prednisone until week 52. At that time her IgA was in the 70s and we were ecstatic. During that period she had 8 cycles of chemo. There were a few interruptions in her medication due to upper respiratory infections and other periods of 'I feel terrible'.
In February 1997 - Ellen wrote: "Healthwise, I am doing stupendous. That is the continued diagnosis from my doctor. We have started a new IV drip medicine (Aredia) that stimulate bone cells and I do it every four weeks for 4 hours in his office. It made me sick this time; usually it is a three days delayed bone ache. Today I start on another series of chemo/steroids for 5 days. Then I will be weak and dopey for about 10 days.... then just weak for anther four weeks until I see the doctor again and we start the chemo/steroids all over again. Meanwhile I will have another IV drip procedure and three lab requirements. Other than that, I really don't have a problem in the world. I'm still hoping that April 1 will find me released and in remission like I plan......won't that be absolutely wonderful" In late May '97 and June, (week 62) Ellen started interferon. 3 million units 3 times a week. She did 4 cycles in May/June, had significant reactions, was taken off it during July and tried again in August (3 million units 2 times a week) for 2 cycles and that was it. The side effects were too great for her.
In week 78 Ellen returned to Alkeran - Prednisone combination. Week numbers are approximate give or take a week... Ellen currently has no fractures and no bone pain (other than knee pain episodes) - but does suffer from 'electric' headaches - or shooting pain behind left ear - this almost brings her to her knees, but goes away only to come back at some unexpected moment. Frequency of headaches was bad in weeks 7 - 10 but has come down since then.
September 1997 (week 78) update. Ellen's was released, from chemo and tried interferon over the summer. The details are scattered earlier in this text.
September 10, 1997 , her IgA count has rebounded and she resumes treatment with Alkeran/Prednisone. Fortunately for Ellen there have been no fractures. Her bones seem safe. There have been no X-rays or scans of any type since diagnosis, so we don't really know what is going on inside. Ellen has visited a cancer center and has decided against a transplant. She continue to receive Aredia every 4 weeks.
November 1998 update . As the numbers given earlier show Ellen's IgA continued to climb, up to a peak of 2080. In week 122 she resumed a VAD protocol and after two cycles her count dropped to 884 over 12 weeks. Obviously her MM has become resistant to this therapy. Three weeks later the IgA count climbed to 1690.
NOTE: There have been some 'voids' in Ellen's treatment cycle, and these are solely at her request, as she desired time off from treatment.
The summer of 1998 was good for Ellen. There were days of weakness and exhaustion, but she spent many days in her garden and enjoyed a lot of outside activity. Immediately upon resuming VAD her energy level dropped and has stayed low through August, Sept., October into November of 1998.
A full body X-ray was done in October 1998 and the radiologist reported no change since diagnosis (early 1996). Thank God for Aredia! Ellen still has recurring headaches, now diagnosed as 'cluster headaches' and we are pursuing some medical relief. Eyes have been checked and a 'freckle' is observed in the left eye. It has been photographed for a baseline, but there is no indication of a vision problem causing the headaches. At Dr. Harper's request Ellen visited a neurosurgeon and his only conclusion was the 'cluster headache' diagnosis. Ellen reports and demonstrates an unusual, for her, sensitivity to bright lights and sunlight in the same period of time as her headache episodes.
Starting November 7, 1998 Ellen began a Dexamethasone (40mg daily for 4 days, 10 days off, repeat) only treatment. With the support of our oncologist we are putting together a package for a telephone consultation with Dr. Durie. Headaches vanished during Dexamethasone but returned with a vengeance during day 6 - 7- 8.
Speaking only as a caregiver, it is difficult to see how this cancer impacts her life. Even without bone fractures, the impact of the medicines has been devastating. Steroids knocked her down, interferon knocked her down, two rectal prolapses, and the time in bed recuperating from the medicines has had a severe impact on her outlook on life. It is tough to go from an active life to one of medical confinement. During treatment Ellen has gained about 20 or more pounds - hair loss doesn't compensate for that, she says. The weight gain, high blood pressure, high cholesterol and headaches- all since treatment began have contributed to a very difficult period of life for her as a patient.
December 4, 1998 (week 142) update Ellen just finished her second cycle of Dexamethasone (4 days on, 10 days off) and the IgA test on 12/1/98 showed a significant increase in her IgA - which is now at the highest since the original diagnosis 2.75 years ago. So pulsed dex we are told is out as a treatment for her. And since she wasn't responding well to VAD - that has been discarded as well.
Coincidently on 12/2/98 we had a telephone consult with Dr. Durie. He was helpful, encouraging and practical all at the same time. Based on her records and the most recent test results, he eliminated some choices (such as Dex and Biaxin - which work on those responding to dex alone) and offered two alternatives: cytoxan - vp16 or thalidomide as potential choices for Ellen The next day we had a regularly scheduled visit with our oncologist - and within minutes of starting the visit he brought up thalidomide (on his own). He's involved in the consultation with Dr. Durie, but wasn't in on the phone conversation - but will have an audio tape (from us) and a report from Dr. Durie to bring him up to date.
Ellen has chosen to 'take some time off' and recoup strength and to let the doctors think about the alternatives. She's also fighting an upper respiratory infection (Biaxin to the rescue), cluster headaches, high blood pressure, high pulse rate, exhaustion, etc. While she 'rests' she is to get EKG and other tests to establish if there is any heart muscle damage from the earlier VAD treatments (only 4 over 2.5 years) which might account for the high rapid pulse rate (120+).
In an unrelated visit to another doctor I happened to mention the cluster headaches and he recommended Imitrex (nasal spray of 20mg sumatriptan) used in migraine headaches - but effective also in some cluster situations. We're happy to find someone who will listen - because frankly none of the cancer docs are concerned about headaches - even though Ellen now has to take morphine to get relief from the pain. One cluster WWW site describes the pain of cluster headaches as 'incomprehensible'. And having watched Ellen go through one, I would agree.
January 6, 1998 (week 147) update Growl, growl, growl - (Just the sound of a frustrated husband) Ellen saw the oncologist for the first time this year - and the good news (maybe) is that it has to get better from here. Briefly, dx'd 3/96 - 4 cycles of VAD - 2 cycles of pulsed dex - not responding Took 7 weeks off (from last pulsed dex) - and spent most of December fighting upper respiratory infection, headaches (Imitrex solved that), increasing blood pressure (not solved), increasing exhaustion (echocardiogram okay - MUGA scheduled for tomorrow, 1/7/99), and 2 units of blood on 12/27/98.
IgA counts now increased to 3160 (1,000 points in 1 month) and the decision of Cytoxan or thalidomide is now on the plate (Friday 1/8/99).
We did get Thalidomide STEPS data. It has been scanned AND IS ONLINE if someone wants to look at what the doctor gets: just click here There are 5 pages of typed info - doctors letter, thalidomide results, and components of the STEPS program. Interesting reading...
January 22, 1999 Update Week 148 Another difficult two week period. Ellen's counts continued to go down (HGB, HCT, RBC) and she received another 2 units of blood on January 20th. Today, 1/22/99 her counts are a little better, but her WBC count is going down. She started Thalidomide on January 15, 1999. Most noticeable side effect is drowsiness and a very deep sleep. Coincident with the administration of Thalidomide she a) started having temperature extremes, b) her cluster headaches stopped, c) the coughing episodes she has had stopped and d) her nose bleeds diminished. There is no concrete relationship that we know of between these events. Just a few less things to worry about. Hooray! As of Jan 20th the temperature extremes stopped - was this due to the transfusion? Who knows. On January 19th we received her most recent IgA count and it was down from 3610 to 2880 - and there is no explanation - other than sample error (which one?). The most recent sample was taken on January 12th as a baseline for measuring the effect of Thalidomide. Now we don't really know what the baseline number is.
February 12, 1999 Update Week 152 Best of all I think is the IgA count. On 1/5/99 it was 3610 Today it is 3190 We had a test run on 1/11 and that result was 2880 - at the time the hem-onc thought it wrong - as Ellen had received no chemo for over 6 weeks. If it was wrong, then today's count is great news and shows a decrease. If that count was correct, then today's count shows an increase, but it is at a slower-than-ever-rate than the latest 5 or 6 IgA test results. Either way I feel the thalidomide is helping. Now if we can fix the kidney situation.....
October 15, 1999 Update Week 187 A lot has happened since the last update. Ellen's kidneys began to fail in late 1998 (that is our opinion) and dialysis was the recommended solution. Attempts at dialysis began in May of 1999. For whatever reasons (surgical, equipment) Ellen experienced a lot of difficulties - and required four (4) surgeries between late April and mid-July before they had a peritoneal catheter inplace that worked. During the third surgery she experienced a series of seizures and was in intensive care for two days and placed on dilantin to treat and prevent future seizures. During ths period she has required 3 additional blood transfusions. A word of caution: do not accept transfusions without a leukocyte filter! By accident Ellen was started on a transfusion without a filter and the reaction is quite severe. I assume all cancer patients should have this filter.
During July she had to undergo hemo-dialysis while the newest catheter healed in. We are very glad that she does not have to use hemo-dialysis. Peritoneal dialysis is our preferred method. It is easier on the patient and caregiver, it seems safer, and it gives the patient more control over life.
Dialysis has improved her quality of life. She has lost 35 pounds of fluid weight - which she began carrying well over 18-24 months before kidney failure was medically detected.
Ellen's endurance and strength has continued to decline. In our case none of the 3 doctors involved has paid much attention. We finally forced the issue and Ellen has started a physical therapy program through the local hospital.
The results of the thalidomide treatment and some other blood counts are shown below. Please keep in mind she was refractory to VAD and pulsed dex. She is NOT A TRANSPLANT PATIENT. She required transfusions 12/26, 1/20, 2/3, 7/24, 8/20, 9/24. She has been on procrit, weekly, since mid Jan 1999. She started peritoneal dialysis in late May. BUN and Creatinine levels for dialysis patients are significantly higher than the normal range. These higher levels are acceptable for a patient undergoing dialysis.
Week Test WBC RBC HGB PLT BUN Creat IgA T'Dose Date K/uL M/uL G/DL K/uL MG/DL MG/DL mg/day IgA 1/5 3610 Base 1/11 5.2 3.2 9.9 40 - 1.9 Thalidomide started 1/15 wk 4 2/11 2.3 3.05 9.3 45.8 41 4.4 3190 200 wk 9 3/16 2.95 3.3 10.1 44.7 45 4.5 3090 300 wk 12 4/06 2.49 3.27 9.9 48.8 50 5.8 2830 500 wk 15 4/29 2.34 3.5 10.7 52.7 37 6.9 2710 500 wk 19 5/27 4.4 3.89 11.9 44.0 27 5.9 2240 500 wk 28 7/29 3.91 2.96 9.3 57.4 61 10.8 2530 700 wk 33 9/03 3.84 3.35 11.1 33.0 89 10.4 2530 700 wk 34 9/09 4.02 3.10 10.2 38.0 66 11.3 700 wk 35 9/16 4.07 3.03 9.9 41.3 63 11.0 700 wk 36 9/22 3.68 2.84 9.4 42.2 73 12.5 700 wk 37 9/30 4.06 3.74 12.2 53.1 92 12.0 700 wk 38 10/07 4.09 3.51 11.8 47.3 75 12.9 2990 700 Test WBC RBC HGB PLT BUN Creat IgA T'Dose Date K/uL M/uL G/DL K/uL MG/DL MG/DL mg/day
More complete and detailed records are at this link to current and historical blood tests.
After 38 weeks of thalidomide the results appear mixed. Keep in mind that Ellen had no other alternative. Right now her general blood counts are better than they have been all year and the IgA count is significantly better than the original 3,610 back on January 5, 1999. We are in a 'wait and see' period right now. The thalidomide dosage has been boosted to 800 mg. We'll know more about the future in November 1999.
November 21, 1999 Update Week 193 We reached this date full of hope. Ellen was feeling very good, looked good, and was getting stronger. We had great plans for Thanksgiving, Christmas and all the holiday events. However this week was the start of a major shingle attack. The disease appeared first as a back pain. It was misdiagnosed as such. Then when the eruptions appeared we assumed it was from using a heating pad.
By the time Ellen was on an anti-viral the shingles had spread and were quite large. Simultaneously Ellen began to suffer from nausea problems. About this time Ellen's hormone therapy was abruptly stopped (to counter menstrual bleeding which had also resumed during this period).
The nausea problems persisted and were treated as though they were a part of the multiple myeloma disease. Our opinion was that the shingles some how were related to the nausea problem.
It wasn't mid to late January that the nausea was approached as a separate condition unrelated to multiple myeloma. By that time Ellen had lost 16 pounds and was considerably weaker than ever before.
The first test (ultrasound) revealed a small gallblader stone - too small we were told to be the source of the problem.
February 3, 2000 Update Week 203 During a regular visit to the oncologist and with the approval of a nephrologist all of Ellen's medicines (except seizure, tranquilizer and acid-reflux) were stopped. The thought being that blood counts might improve and nausea might stop.
During this visit we learned that the IgA count was increasing (interestingly still below the figure of Jan. 1999) and that the wbc and platelet count were critically low. Were we faced with a thalidomide induced problem or was the cancer simply taking over entirely? The oncologist conducted a bone marrow biopsy and we had to await the results.
On Friday second test (supine stomach emptying test using a radioisotope) revealed that Ellen's stomach was not emptying.
On Monday we were called back for a second stomach emptying test (Ellen now in a sitting position) and she didn't pass that test either.
Unfortunately the day (Monday) of the last test (week 204), was Ellen's last full day alive. She was very weak that evening, she hooked up her dialysis machine and went to bed. During the evening she complained of a fever and raspy breathing. We called a doctor and Tylenol was prescribed, plus a follow-up visit. Her pulse rose quite high (128) and another doctor restarted her beta-blocker. Both her fever and pulse returned to normal. Breathing problems continued and we decided to call an ambulance.
At the hospital (6:00 a.m. Tuesday) Ellen was x-rayed and pneumonia was the diagnosis. The ER doctor obtained permission from her (she was alert and able to talk) to withdraw blood from the femoral artery. I helped with pressure on the site while blood tests were run. They returned with an i.v. antibiotic, and Ellen passed away (7:30 a.m., 2/8) before it could be administered. Pneumonia had taken her in less than 12 hours.
Despite this unemotional description, the loss was anything but that. Among my last words is: The Final Chapter
At this date - February 16, 2000 I am awaiting the results of the last blood test (day of death) and the results of a bone marrow biopsy taken 5 days earlier. When the results are in my hands I will post those results on these pages:
Multiple Myeloma is a terrible disease. There is no justification for the damage it does to the patient. Many of the deaths are needless and someday I hope they can be avoided. The most important things we can do (patient or caregiver) is to be outspoken and risk offending doctors and nurses until we are taken care of and our/your condition is improved. There is no need for anyone to bear the brunt of mis-diagnosis or the misery of nausea. Had we an opportunity to do this over we would certainly ask more challenging questions and insist on more tests. Don't misunderstand me - it was up to us to take the first step. The doctors cannot read what is in our mind. I've learned that doctors and nurses really listen to the patient - the concerns of the caregiver are second - and if the patient doesn't complain, it just doesn't happen - not until there is an emergency - and then it may be too late. So don't wait, speak up now!
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