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June Brazil
12.17.99

Tarrytown, NY

1956 / Class of '93 / Type: Free Kappa Light Chain type, initially non-secreting / History of autoimmune disease, extensive bone involvement, kidney failure / Died 12-17-99 at age 43

I spent most of my life in Westchester County (I had a 4 yr. stint in NYC). I lived about 12 miles down the Hudson River from the Indian Point Nuclear Reactor and I grew up two blocks away from a General Motors Assembly Plant and Mallory Battery Plant. The park I played at as a child was sandwiched between the two plants. It was later found that the battery plant had contaminated the ground in the area with mercury.

As a child, I seemed to have a lot of colds and was frequently treated with antibiotics. As a teenager I developed severe allergies and asthma and received desensitization shots which didn't help the allergies and to which I often reacted. My allergies were so bad that I had pneumonia three times during my senior year of high school. I became interested in alternative medicine and using some of the things I learned was able to moderate my allergies quite successfully.

My son David was born in 1978 and my son Jessie in 1980. After Jessie I didn't quite feel right... a lot of joint pain and fatigue. I went to a local doctor who thought I might be developing rheumatoid arthritis and gave me some samples of a non-steroidal anti-inflammatory drug to take for the pain while the blood tests were out. Well I had a severe allergic reaction to that drug and it started a whole new cascade of allergies and infections, which were eventually diagnosed as systemic lupus erythematosis (SLE). I spent the next four years on Prednisone. By 1985 the doctors had nothing more to offer me.

It seemed as if I had constant infections, my lung function was getting worse and the doctors had nothing else to offer. I researched all sorts of alternative therapies and their effects on the immune system and using a combination of these methods was able to achieve a remission of the SLE. In 1986 I had a work-up for chronic fatigue syndrome and one of the tests they did showed low immunoglobins, was the myeloma already starting?

In 1989, I was stung by a wasp while gardening and had a severe allergic reaction. In 1990, I became pregnant and had an incomplete miscarriage which was mishandled by my HMO resulting in a severe infection and blood loss. In 1992, I had another wasp sting. In 1993, I took rather rigorous trips to England and Japan. During this entire time I was working 80 hour weeks, seeing patients, working on both state and national levels with regard to acupuncture regulations and certification. Which brings us to...

Multiple Myeloma Diagnosis: At the age of 37, in December 1993, I suffered a pathological fracture of T5 after falling down a couple of stairs. The fracture did not show on x-ray and because of my age they assumed it was a bad sprain, so I walked around with it for 2 months. Because of continuing pain, I had an MRI which diagnosed the fracture, but didn't show plasmacytoma. During a subsequent MRI my back was re-fractured - T5 was now 100% compressed, but I still didn't have a diagnosis. I was transferred from a community hospital in Westchester Co. NY to a NYC hospital, where various tests were run which showed elevated light chain kappa in blood and lytic bone lesions in every bone except my hands and feet. Plasma cells in the marrow were less than 10%. Beta-2- Microglobulin at diagnosis was 2.3. It has gone as high as 3.6 and each time it has been elevated above 3.2 I have sustained a fracture. Case and slides were reviewed by another oncologist and pathologist, who of course had a different opinion. I was sent home in a back brace with one doctor making it sound like I would be dead if I didn't do chemotherapy this week and the other one saying no treatment was necessary at the time. At that point I chose to pursue none of the standard treatments, but to use some of the alternative treatments I was familiar with to see what would happen.

To clarify, I have the sort of MM with low immunoglobins (Igs). No M-protein spike, just a lot of free kappa light chains and slight anemia. So when we look at blood work we are looking for the Igs to go up, which is different from a lot of MM patients. I had been getting regular bone density readings due to my history of Prednisone use for the SLE and had one in August '93 that was okay, but when the test was repeated the following spring the density had taken a big dive. Subsequent bone density tests continued to show bone loss.

I had surgery on my upper back in Sept '94. In 10+ hrs everything was reconstructed and tied together with rods from T2 - T8 and I made an excellent recovery from that surgery. I tripped over Max, the dachshund, in Jan '95 and sustained a plateau fracture of the tibia, nevertheless, I was able to walk with a cane and healed well.

I suffered a second fracture at T9 in April 95. The orthopedist felt this may have been due more to the load on the spine from the rods in my upper back than MM. Anyway shortly after that (June 95) my immunoglobins and Hematocrit took a dive so we did four rounds of Dexamethasone (Decadron - first round 40 mg per day for 4 days. I gained 25 lbs, couldn't stop eating, couldn't sleep, was extremely irritable, developed peripheral neuropathy and severe reflux. Dosage was reduced to 20 mg. per day for 4 days, it was a little better, which improved the blood counts.

The counts remained stable for 4 months and then started drifting down again. I did one round of Melphalan and Prednisone and shortly after that we found a large plasmacytoma in my right femoral head (hip), which was treated with radiation therapy (RT). I had a pretty difficult time with the radiation. Even though I was only getting my hip irradiated I found that I was incredibly tired and queasy and spending a lot of time in the bathroom. But the RT appears to have resolved the hip problem.

A follow up skeletal survey Jan '96 revealed a lumbar fracture (L-5) which probably happened the previous September when I was having symptoms, although the x-ray at that time was negative. There was a lot of pressure to have radiation to my lower back to make sure the tumor was gone. I had an MRI, which didn't tell us anything new and then I had a MIBI scan, which is a nuclear medicine test that can differentiate plasmacytoma activity in the bones from regular bone healing. Nothing showed up positive in that test, so the doctors said that the test was inconclusive because they couldn't explain why they weren't seeing active lesions if I hadn't done any of their therapies. I made the decision that since my back was feeling okay I wouldn't do any further RT.

I had a telephone consultation with Dr. Brian Durie at Cedars Sinai in Los Angeles December 1995. He felt I had a non-secretory MM and that it would be a good idea to do some chemotherapy and then possibly do a stem cell transplant, but wanted to get some more information by performing a peripheral blood labeling index test, which is only done at the Mayo Clinic, before that recommendation was finalized. The special test at the Mayo Clinic showed that although I have Myeloma Cells in my blood, they are not activated, so aggressive treatment was not recommended. I have always been very sensitive to drugs. We have found that many of these drugs / chemotherapies we have used cause my blood counts to really take a dive, even using 'pediatric' doses.

Former oncologists have recommended that I do VAD, but at the same time would only give me 25% of the 'usual' dose because of my sensitivity. Interestingly enough, when I told Dr. Durie about my severe reaction to Decadron he ruled VAD out as a treatment option. He also said that because of my drug sensitivities he would not recommend a BMT.

I'm inclined to stay with least invasive therapies. I feel a little can go a long way, but many practitioners seem to have a very aggressive approach with these things. In reviewing the literature, aggressive chemotherapy seems to be a strictly American approach (ref: Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer by Michael Lerner, published by MIT Press). Also, in my research and networking I have talked to a number of Myeloma patients who have survived 20+ years without BMT. There are doctors do a lot of BMTs for MM and if you get an opinion from them, they will suggest a BMT. There are other doctors who aren't as wedded to the BMT treatment theory and perhaps they can provide a broader spectrum of possibilities for MM patients.

I have been using alternative therapies in managing the Myeloma (homeopathy, Essiac tea, nutrition/vitamins, chi gong, imagery, acupuncture). I used many of these before I got sick two years ago, since I am an acupuncturist/herbalist by profession. Everyone who has reviewed my case (including the Mayo Clinic and Dr. Durie) has said that my case and the progression is highly atypical. Could it be that some of the alternative methods are impacting the MM? I don't know -- but I'm going to keep doing them!

Sidetracked with Lyme Disease: In Aug. '96 I contracted Lyme Disease (a tick borne illness endemic to the northeast) which in turn seemed to have 'activated' the MM (i.e. my B2M went from 2.6 to 3.6 in 4 weeks). I spoke with Dr. Durie, who said that certain infections seem to activate MM and that once the infections are properly treated the MM markers will return to pre-infection levels. In addition to the chemo, I took 200 mg. of Doxycycline (an antibiotic) a day for six weeks.

Sept. '96 - I have done four cycles of Cytoxan (100 mg./ day) for four days and Prednisone (50, 40, 30, 20, 10 mgs) for five days about 5 weeks apart. The last round we used 8 mg of Decadron instead of Prednisone but it didn't seem to make any difference in my counts, only in annoying in side effects.

I have resumed my regular activities within the confines of my pinned together back. I was taking 10 mg of Fosamax, 30 mg of natural thyroid hormone daily and 50,000 IU vitamin D once a month along with my other supplements. I have an endocrinologist who specializes in Bone Metabolism follow my skeletal problems. It has been my experience that he knows more about bone kinetics than any of oncologists or orthopedists I have talked to. He recommended my using Fosamax over Aredia in Sept. 95. The 7/96 bone density scan showed a 29% increase in the bone density of my hip and a 19% increase in the bone density of my lower spine. A follow-up scan on 2/97 showed no improvement in density and we wondered whether I had stopped absorbing the Fosamax. I began trying the Aredia IV again. This was extremely problematic to start with as I suffered from severe bone pain and flu-like symptoms for almost two weeks after the infusion. This was with a starting dose of 30 mg. infused over 4 hours in 1 litre of saline. These symptoms slowly reduced with subsequent administrations but took six doses to totally disappear.

1997- In January, I flew out to Los Angeles to see Dr. Brian Durie and run some tests at Cedars Sinai Cancer Center. I had a skeletal survey, MIBI scan and a FDG-18 PET scan. These tests reflected that I was in a plateau with no active disease and Dr. Durie suggested that I keep on my present treatment until things changed.

In April, I fell while stepping over a fence and re-fractured three vertebrae. While it was uncomfortable and slowed me down for a couple of weeks (and prevented my taking a trip to England and Scotland!) it wasn't anything like the previous fractures. Dr. Durie was concerned that the bone healing might stir up the Myeloma activity and encouraged me to try and get 90 mg. of Aredia every 2 weeks to prevent problems. By the end of May I was feeling like I had a pulled muscle in my right thigh and after it persisted for three weeks I mentioned it to my local doc. She immediately sent me for an x-ray which revealed that several lesions in my femur had progressed. I consulted Dr. Durie and he suggested a protocol that we used through the summer of 1997 which included using 90 mg of Aredia every 8 days. Although my leg discomfort decreased by about 90% and overall I was feeling better than three months earlier, many of the lesions were still progressing and my B2M rose to 3.9 - the highest it had ever been. In Sept I returned to the Cytoxan / Prednisone combination that had worked so well the previous year. In Oct I got a horrible sinus and ear infection that required antibiotic (Zithromax) treatment. My B2M when the infection was active was 6.0. The first antibiotic didn't quite clear it, so I was put on Bactrim. Now apparently Bactrim is very hard on the kidneys. Even though I'd had no previous problems, I started feeling very strange and it turned out that my kidneys were shutting down. We were concerned it was the Myeloma but discontinuing the Bactrim resolved the problem in about two weeks.

Overall the trend for the fall of '97 is that the serum Calcium is remaining higher and out of normal range almost all of the time now. It doesn't seem like the Aredia is doing much on that front. I traveled out to LA to see Durie and had a serum calcium of 11.6 only five days after Aredia infusion. He recommended a short course of steroids reduces the level to 10.3 in four days. Repeat PET scan at Cedars Sinai shows increased Myeloma activity in left shoulder, sternum, lower thoracic and lumbar spine. Cytoxan/Pred dosage was increased 50%.

January '98 - Even with chemo, alt day Prednisone, and weekly Aredia the serum calcium is still running quite high. Finally, I am approved to be a trial of one on the new bisphosphonate Zoledronate. Within 4 days of the first infusion (8 mg) my serum calcium is smack in the middle of normal where it stays for the rest of the month. In March, we repeated the PET scan and it shows almost no activity -- a big improvement from Nov! Dr. Durie suggests that I try getting along without chemo. So I will do the Zoledronate monthly along with a small alternate day dose of steroids which has shown to extend plateau.

July '98 - I came down with a whopping case of shingles which went undiagnosed for almost two weeks since it was on my head under my hair and at the time the outbreak began I had some dental work which is where we originally thought the pain was coming from. (An interesting side note, this shingles attack happened within a week of an airplane trip, the next month at our support group meeting 3 other folks who had recently had flown also came down with shingles.) Treated with 2000 mg Acyclovir, then 1000 mg Famvir, which reduced symptoms but also decreased kidney function. Started 10 g gammaglobulin IV every 4 weeks. Each time I got a Zoledronate infusion, the shingles symptoms got a lot worse.

(The short updates below were taken from June's medical history log.)

Nov '98 - Repeat PET scan was basically unchanged. Hematocrit dropped from 30% to 25%, and kidney function decreased (creatinine 2, clearance 33), but I feel OK. Local onc. started me on Epogen 10,000 units 3x/week. Total protein in 24 hr urine 688 mg. Serum calcium 9.2.

Dec '98 - Durie suggested discontinuing Zoledronate and watching calcium. So far, the markers are staying constant, but it's not clear that stopping Zoledronate has affected kidney function. (Dr. Berenson has done studies that show that a "non-active" part of the Aredia and Zoledronate molecule can create kidney toxicity in some patients.)

Jan '99 - Creatinine clearance dropped to 25 with creatinine nearly 3. My blood pressure, which has always been a low 90/60 suddenly shot up to the 160/100 range! Saw Durie and Dr. Rodriguez (nephrologist) who recommended a kidney biopsy. He put me on Clonidine, which controlled my BP and tachycardia, and I went on a very low sodium diet: <500 mg/day.l

Late Jan '99, from an update to friends - Well, I've sure been through the ringer the yesterday and today... I saw the Nephrologist on Tuesday afternoon. He was really concerned about the state of my kidney function and had about 5 different ideas of what it could be given my history of SLE and Myeloma. Of course, he also added, it could be something totally unrelated to any of the pre-existing conditions and that really the only way to determine this was by kidney biopsy, which I'd have to have done back in NY as he didn't think it was a good idea to do the biopsy and then fly. On the other hand, both he and Dr. Durie feel strongly that they have to have the renal pathologist at Cedars Sinai look at the biopsies because it is a complex case and they really don't know what they're dealing with. Meantime, he put me on Norvasc, a high blood pressure medication, because that's been a continuing problem and again because the kidney problem could be one of many things a lot of drugs (like diuretics) weren't a good idea because it might worsen the situation (High BP in itself can put you in kidney failure in six months).

I met with Dr. Durie this a.m. and he also found the situation quite puzzling and couldn't come up with a clear answer as to the situation. He was going to talk to the Nephrologist later and see if I could take some steroids while I was waiting to have the kidney biopsy without making it harder to read. Here is a list of what the 'more reasonable' possible diagnoses:

  • lupus nephropathy
  • myeloma nephropathy
  • steroid withdrawl
  • amyloid
  • viral infection
  • nephrotic syndrome (drug induced?)

I spoke w/Dr. Durie tonight and they feel that they want to get the biopsy done before they do any treatment. So we're working on getting the biopsy lined up for next week... a trick in itself because they want to do some pretty specialized tests that apparently can only be run at Columbia Presbyterian in NY and Cedars Sinai in LA. At this point it looks like we will get Columbia to process the biopsy material (getting it done quickly is important) have them do a preliminary read and then send the samples to CS for further tests.  Complicated huh?

Early Feb '99, from a periodic update to the Myeloma List - I know it's been a really long time since I've given you a 'real' update... When last you heard from me I had a lovely case of shingles that lasted most of the summer. Since acyclovir wasn't really working they switched me to Famvir, which definitely cleared up the shingles symptoms much more effectively. Since Famvir is a lot more nephrotoxic (hard on the kidneys) my doc had me do a creatinine clearance (CrCl) test on a 24 hr urine sample. At that point, in August '98, it was 58 (normal is 80-100), my serum creatinine was at 1.4 (barely over the upper limit but my kidneys were operating at about 70%. At diagnosis, in early ‘94, I had a CrCl done and it was 79.3 -- so that was the baseline. This meant that I could only take half the normal dose of Famvir. I should also note that after the shingles hit each time I got a Zoledronate infusion (8 mg) the shingles symptoms got a lot worse. Dr. Durie suggested cutting the dose in half to see what happened to the symptoms. Apparently they've been seeing some adverse effects on kidney function in Myeloma patients receiving Zoledronate and high dose Aredia.

As summer turned to fall, the serum creatinine rose and the CrCl fell. When my serum creatinine hit 2.0 in late Nov., my CrCl hit 33... kidney function down to about 41%. At this point my HgB & Crit were really low too, even though the Myeloma markers were stable.  Epogen was started to boost up my red counts. At this point Durie suggested that I discontinue Zoledronate and

In early January my CrCl dropped to 25 and my creatinine was pushing 3. My blood pressure (BP) which has always been a low 90/60 suddenly shot up to the 160/100 range (yikes!) I made a trip to LA during the last week of January to see Dr. Durie and a Nephrologist he works with. Both Dr. Durie and I were hoping we could figure out what was going on without going thru a kidney biopsy. But when we looked at all the possibilities of what could be going on he reluctantly agreed it was necessary. They suggested I have the procedure done in NY as you have to spend 24 hrs on your back after the biopsy. I certainly feel sore and kicked in both my back and stomach from the internal bleeding (I ended up needing a unit of blood to make up for the bleeding caused by a couple of needle sticks in my kidney -- bet you didn't know that about 20% of your blood passes through your kidneys with each heartbeat).

Anyway, the preliminary diagnosis is light chain nephropathy (LCN) and amyloid was ruled out (phew!).  LCN means the proteins punch holes in the functional kidney unit, rather than building up in the kidney as they do in amyloid. While it's not a great diagnosis either, it's apparently more treatable than amyloid.  Durie put me on some steroids and the pathology slides are on the way to Cedars for further testing, so there might be some more information by the end of the week.

So how does this all net out? Well, I definitely get tired more easily and since I am on a low/no sodium diet I basically have to make every thing I eat myself and using different techniques and styles of cooking than I'm used to because tamari and miso are straight out (you wouldn't believe how much salt they put in some things!). So now you know why you haven't seen so much of me.

Mid-Feb '99, from an update to friends - Well, the preliminary results are in, and it looks like light-chain nephropathy and a possible infection on top of it. What is light-chain nephropathy (LCN), and can you say it five times fast? Well, another name for it is Myeloma kidney and what it means is that the Myeloma proteins are 'punching holes' in the glomerulus (the functional unit of the kidney) and other things are leaking out, like protein. The pathology samples still need to get sent out to Cedars-Sinai in LA for more specialized testing, so we hope to have further opinions by the end of the week. The good news is that there wasn't any evidence of amyloid (that's where the light chain proteins get tangled up with each other and build up in the kidneys (and other organs). So at this point the treatment is Prednisone, and further treatment decisions will be made based on this week's lab tests and Cedars' peek. If you hear a lot from me, or get some weird suggestions, please remember to blame it on the Prednisone :)  

Late Feb '99 - Dr. Arthur Cohen at Cedars examined my kidney biopsy and described my problem as Light-Chain Deposition Disease (LCDD). He also commented that the sample looked good with little damage to the kidney structures. There was no evidence of a viral infection, though there was some minor indication of irritation from the Zoledronate. The consensus was that this could be treated with pulsed steroids.

(From an update to the Myeloma List) My kidney biopsy finally arrived at Cedars Sinai in LA this week and their pathologist had a slightly different 'take' on my situation. He described my problem as Light Chain Deposition Disease (LCDD) as opposed to light chain nephropathy. What's the difference? Well as I understand it, in LCDD the Myeloma protein gets backed up in the kidneys and creates inflammation. Apparently one of the most common symptoms of this is high blood pressure, something I developed in the last eight weeks. The diagnosis on this coast was light chain nephropathy, which means that the proteins have 'punched holes' in the kidney's functional unit.  Apparently this has not happened in my kidneys (yet). The LA pathologist commented that the sample looked very good and very little damage had been done to the glomeruli, tubules or vasculature. There wasn't any evidence of a viral infection. There was some slight indication of irritation from Zoledronate, but it was quite minor.

Dr. Durie said this was the most 'treatable' type of Myeloma kidney complication (seems there are a lot different ways that Myeloma can muck up the kidneys!) The first line treatment is more steroids; in fact I'm going to be doing a large steroid pulse this weekend (Mike has already put NYPD and NYSP on alert). Dr. Durie is very hopeful that it will do the trick. If not, we'll add some Cytoxan to the next pulse as that has worked well for me in the past. We discussed the idea of thalidomide but he felt that there was a lot we don't clearly know about it's actions and side effects (especially renal) yet and that if we can get this cleared up with steroids or steroids and Cytoxan that's the best way to go.

May '99 - Pulsed steroids don't appear to be as effective at knocking back the protein as they once were. Durie suggested low-dose Thalidomide (50 mg/day.)

(The next updates were taken from those June sent to friends and the Myeloma List.)

July - Early Aug '99 - I've been one sick puppy of late but I'm feeling a lot better now!  In early May I was put on low dose (50 mg/day) Thalidomide to treat rising Bence-Jones protein in my urine -- it had gone from 3200 mgs to 4900 mgs in two weeks (definitely not a good trend!). At that point my serum creatinine was 1.7 and my creatinine clearance was 38 (an improvement in kidney function from January, but still less than 50%).  Being on the Thalidomide made it difficult for me to sleep and left me sort of groggy during the day.  In addition, a constant low level nausea and dizziness were my constant companions. The urinary protein basically remained unchanged and we felt the thalidomide might be creating some stability or preventing disease progression (as it turns out, it looks like the protein stopped going up independently of the Thalidomide). By June 1st my creatinine was 2.5, by July 12th 3.8 with a CrCl of 14 (this is pretty poor kidney function - close to needing dialysis - yikes!) . We discontinued the Thalidomide, but six days later the creatinine had risen to 4.3. I did a pulse of Prednisone and that brought it down to 3.4 with a CrCl of 15.8 and that's where I am right now.

 

(Note in June's medical log: Durie had two other light-chain Myeloma patients who developed kidney-function problems on Thalidomide, but they cleared up over a period of 3 months.)

 

Coming off the Thalidomide was about as bad as being on it. I was basically flat on my back for the better part of two weeks and feeling about 3x as bad as the worst steroid crash I ever had for that whole time. I would have been in the hospital had I not been able to arrange a home IV for fluids.  At this point we're trying to leave well enough alone and see what happens to kidney function when we're not throwing all sorts of drugs at it.  My blood pressure is still acting like a spoiled two year old and running high is not good for the kidneys but it seems to be responding to a recent change of medications so hopefully we can quiet down the whole thing in the next couple of weeks and have me in a decent state for some treatment should that need occur.  So anyway that basically brings us to this week and explains why you haven't heard a whole lot of me of late.

 

Mid-Aug '99 - Finally spoke to Dr. Durie, it's back on the steroid roller coaster for me, but at a lower dose (30 mg/day/4 days) which is half of the last dose. He still thinks this is more thalidomide plus aggravation by high blood pressure problem over the weekend affecting the kidneys. So we'll see what happens. 

 He doesn't want to put me on anti-virals or other chemo ‘til the creatinine is down, he said he doesn't see anything that is telling him that this problem is due to active Myeloma. I told him that if it started looking like Myeloma activity I'd like to go with the most bang for the buck and if it meant being on dialysis for a while to get thru the therapy I'd do it. He got real flustered and said we didn't have to think so extremely. So anyway I'm going to start popping the pills this morning.  He said at this point I should stay put and not stress myself out with extensive travel.  So we'll see what happens now.

Late Aug '99 - As many of you know I was traveling to LA last week to see Dr. Durie and Dr. Rodriguez to discuss further treatment options for my renal failure. Well (!!!) the day before I left I found out that my 'sore' leg that I'd had x-rayed three times in the last six months was actually a fracture in my femur (!!!!!) the first two x-rays had been misread but the doc who read the first one saw it and then commented it had been on the last two x-rays as well. No wonder it hurt. Thank heaven it didn't totally disintegrate... but here I was trying to work out the sore muscle and soft tissue problem.

 

Anyway, we were able to order a CT scan almost immediately and get it read STAT -- the radiologist thought it probably needed a pin.  Dr. Durie thought it was a tight call and felt due to my poor kidney function the surgery risk made him think we should try to see if we can get it to mend.  Of course, now that I know I have a fracture I will stay off it instead of trying to walk it off.  Had we known I had a fracture, we wouldn't have put me on Thalidomide, since that probably blocks bone healing with its antiangiogenic activity, and kidney failure also can inhibit bone healing so if we can improve my kidney function that will also help my bones.  I have to repeat a PET scan this week to determine if there is any Myeloma activity in the area or if this fracture might be due to steroids. Dr. Durie will also get an opinion from one of the orthopedic oncologists at Cedars-Sinai this week.

 

I was very lucky that my visit to LA coincided with the International Myeloma Foundation's Patient and Family Seminar and I have to say that I think this was probably the best of the six seminars I've attended.  Of course I couldn't do my usual circulating: every time I turned around someone was telling me to sit down!

 

Anyway, for those of you who were expecting to see me on the National Hopscotch Tournament on ESPN7 next week, sorry but I've had to withdraw!

 

Oct '99 - Unfortunately, shortly after the last update I developed a romping case of diabetes which requires insulin and has taken up a lot of time and attention (for example, the recommended diet for diabetes is almost totally opposite to the diet recommended for kidney failure).

 

Anyway, to jump ahead to the current situation, I've been in White Plains Hospital since last Saturday with a whopping case of pneumonia that came on over a six hour period five days after a Cytoxan treatment. According to my local onco I would have been in deep doo-doo had I waited even another hour or two. They've thrown a proverbial kitchen sink of drugs at me, which has really done a number on my kidneys, the next day or two will determine if I need to go on dialysis, at least temporarily. I'll probably be in the slammer for a while while they continue to clear out my lungs and stabilize my kidneys.

 

Although I'm feeling much better than when I came in, I'm still feeling pretty punk, so you still may not be hearing much from me for a while and if you've written me in the last couple of weeks, well it may be a while for those responses too. Will let you know of any interesting developments as they occur.  [June was in the hospital a total of 10 days this trip.]

 

Late Nov '99 - Thanks for all your emails and calls and cards...since more and more folks are wondering what's going on I figured it was time to post another update.  

 

I was sprung from the hospital on Nov. 2 after two sessions of dialysis. Went back the next day to get a perma-cath implanted (FYI, in the six years that I've had Myeloma I've never had a port or done a stem cell collection or plasmapheresis, so this was new territory to me).

 

Outpatient dialysis started two days later at a free standing clinic which consisted of one large room with 24 dialysis stations.  Luckily I'm a big fan of bad B-movies from the 50's and 60's or this experience could be quite grim.  A couple of folks have asked me how I chose to go this route: well actually there was no choice, the kidney failure happened so fast that we had to start dialysis immediately which meant hemodialysis and getting a port. Since we're hoping that this will be a temporary issue we're going to stick with the hemodialysis for 4-6 weeks and see where I am at that point.

 

My kidneys are already trying to kick in and we've found that it's quite a chore to explain to the folks at the dialysis center that they have to take off less fluid because I'm peeing more -- they don't seem to have much experience with folks on dialysis temporarily or they're invested in keeping us there no matter what.  I've only been at this for two weeks but often times I am totally plotzed after dialysis...schlepping out three times a week for three hrs of dialysis.  We're keeping our fingers crossed that we can reduce or eliminate the need for dialysis or if we need to continue it, do so at home rather than traveling to the clinic.

 

On top of that my hip is really getting to be a bear, so it seems I end up doing a lot of sitting in one place... not my favorite thing!  On the upside, the diabetes seems to have gone back to wherever it came from... almost three weeks of good blood sugars, mostly in the normal range and none requiring insulin.

 

Anyway, I'm persevering while we're looking for new ways to assess what, if anything, is going on with the Myeloma.  I'm still trying to get used to this new level of 'medical interfacing' that I must do on a weekly basis and with a couple of 'surprise' visits to the ER in the last two weeks it's really getting a bit grating for all of us.

 

Well I think that's enough for one update!  Hope you all in the US have a happy Thanksgiving weekend.  Thanks for keeping me in your thoughts and prayers and for staying in touch with me even if I haven't been very good at responding.

 

Love & Cyberhugs, June

Dec '99 - (By Dean) In the early morning on Sunday,  December 5th, after consulting by phone with Dr. Sadan, we took June into White Plains Hospital with high blood pressure, severe headache and nausea (preventing her from taking blood-pressure drugs.) After nearly 12 hours in the E.R., the docs admitted June to try to control the blood pressure, which was still high (about 170/110), along with tachycardia (pulse about 130). Various drugs were administered to bring down the BP, as well as control the nausea. June was able to eat and drink a little, but was feeling very ill, and still had a headache. After another drug was tried on Tuesday, June began to get dizzy and disoriented. Initially, the docs thought it was a drug reaction, and that it might alleviate with dialysis, which was administered the next day. Dialysis proved to be no help, and spinal fluid was drawn to check for infection. A brain MRI was also done. In the interpretation of the MRI, they ruled out a stroke or bacterial infection, but found a condition called demyelination, in which the myelin sheaths in the brain deteriorate. Merck says happens in MS and in autoimmune disease, and sometimes spontaneously reverses.

Thursday evening, Dr. Rie ordered June to be moved to the CCU to let her be on a monitored drip of a strong drug to lower BP. It was also thought possible that a virus was involved, so Dr. Berman kept her on antibiotics. Her mental acuity didn't improve, and she soon became unable to communicate. We decided we didn't want her left alone, and began a 24-hour vigil. The next day, June's husband, parents and some close friends who were healthcare practitioners met with Drs. Rie and Sadan and were convinced that there was no good outcome in sight. They then decided -- guided by June's documented wishes -- that further attempts to treat the disease would not be appropriate. 

June was kept on just enough sedative to keep her from becoming agitated, and allowed to sleep, while a constant vigil was kept in rotating shifts by friends and family. Some read to her, some played music, recited poetry or just spoke softly or sat quietly. On Friday, Dec 17th, just after her son Jessie began his 1AM shift, June took her last breath. Jessie believes she waited for him to be there one last time.


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