Author: Beth

I sent my water off to a national testing lab for a complete analysis (bacterial, mineral, etc). The results came back, and the only abnormality detected was low pH. I’ll be getting a water treatment system to resolve that. I’ll also get a countertop distiller to use for cooking and washing vegetables. I drink bottled water, but may use the distilled water for drinking too. It’ll save some money on water delivery.

Waterwise Distillation Products

All along I’ve thought that I need to hang in here for a few years until researchers find a way to manage MM as a chronic disease or there’s a cure. Bob Meyer just posted something on the MM list that is encouraging. There are many of us who have the same optimism and are doing what we can to keep our disease under control with as little damage to ourselves as possible. Bob’s email to the list follows.

—– Original Message —–
From: “Robert H Meyer”
To:
Sent: Saturday, May 24, 2003 9:21 PM
Subject: [MM] A note of serious hope

Hi All,

Having, like so many of us, taken on the very depressing task of mentally
acknowledging the passing of “Aussie Pat” and Violet Kimball’s husband,
Stanley, and then having sent painful and upset emails to both Chris and
Violet, I decided it was well past time to once again prowl about the
internet to see how things are progressing on MM research.

What I found is extremely hopeful and actually goes well beyond what I had
expected to find. Much of the primary mechanism that “makes MM go” has been
unraveled and moves are well underway to develop methods to disrupt the
vicious cycle of MM cell growth and bone resorption that characterizes most
MM. I won’t go into technical details at this point as I want to keep this
post short and to the point. In any event I have posted some of them
several years ago when they were first suspected. The main thing is that
much has been verified and fleshed out in the last three years so now there
is near certainty about much of the way MM escapes natural controls.

If anyone cares about the technical details, I will post a review (hopefully
in nearly plain English) of what is now known and what is being done. If
anyone wants to see the abstracts for themselves, one good way is to use the
PubMed search engine with the key search directives “OPG AND myeloma” and
“RANK-Fc AND myeloma”. What you will find is extremely uplifting (assuming
you can digest the highly technical terminology).

My main message is that what I am getting from the abstracts is the very
definite impression that some of those on this list who can manage to beat
back their MM for just another few years may quite possibly (I want to say
“likely” but am trying hard to be cautious) outlive their disease. Yes,
there can always be some unexpectedly nasty side effects to the treatment
ideas now being pursued and that could of course lead to disappointments and
some delays as treatment details are further refined – but barring all that
I think the medical community is extremely close to being able to halt the
MM growth cycle in most cases. They don’t yet know what triggers MM, I
think, but they do know an awful lot about how it maintains itself once it
gets started.

Just my personal opinion of what I’m reading in the research abstracts, of
course. I try hard not to be a prophet of false hope but I really am very
impressed at what the medical researchers have managed to figure out about
MM and the way the body loses control over MM cell growth. I certainly
believe that we will very shortly be seeing another new generation of very
promising anti-MM drugs entering the clinical trial gates.

Best wishes all,

Bob Meyer in San Diego county
NO formal medical training but former caregiver to wife (Patricia) dx’d rare
extremely aggressive IgG kappa MM with plasmablastomas and M-spike of 1100
in 4/98, died 11/98 at age 52; prev. MS history; also hepatitis, severe mono

[To Join or Leave the list, go to => http://www.acor.org/myeloma.html ]
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[International Myeloma Foundation => http://www.myeloma.org ]

If you have a Palm Pilot, you can download a free version of ePocrates, which can be quite handy. It’s like a mini PDR, containing all the pertinent information about drugs. You can select all the drugs you’re taking, and it will display the drug interaction precautions as well. Another nice feature is the insurance formularies. When installing, you select your insurance company, and you’ll be able to tell if the drug is covered by them.

I called the University of North Carolina (UNC) for an appointment with Dr. Robert Orlowski and left a voicemail message, but nobody ever called me back. In today’s mail was an appointment card! I’m curious about how they got my address. All I did when I called was leave my name and telephone number. (The phone number is listed under my company name.)

I am hoping Dr. Orlowski will be my local oncologist, since he has a lot of experience with MM. Chapel Hill is about an hour from here. I’ll feel more secure if I can have a doctor who is up on the latest research in MM. I do want to continue to have Aredia at the local hospital though. As far as I know, there’s a standing order for it, and changing doctors shouldn’t nullify that. I’ll have to ask though.

Wouldn’t you know it, the appointment is for the day I’ll be leaving to drive up to Boston for my appointment with Dr. Richardson at the Dana-Farber?

I just had my first serum immonufixation and protein electropheresis done since I started dex and thal on April 4th. The results are encouraging. My local onc says much improved and we’ll stay with current rx.

I have the lab report posted at LABS. You can compare the January test to the May test to see how much of an improvement there’s been!

Monday was my dex day. I got mad at my kitchen utensils and put them all in the dishwasher, washed the dividers and cleaned out the drawers. One of the utensils was too long, hitting the top rack of the dishwasher, so I was wishing I had a saw. Good thing I don’t.

So now it’s 2:00 am, the next day. I’m still up, and don’t want to be. Luckily, I have nothing scheduled. I can sleep in!

Good news – bloodwork from today has my creatinine back in normal range. Dr. Allen is switching me to Aredia anyway though. I’m glad for that. I was really upset about having a kidney problem. I’m glad it was transient. Who knows? It could have been a lab error too. Ok, I was so relieved when the nurse called that I didn’t get the exact result from her. I’m sure I’ll see it when I get the full report. They don’t have the proteins back yet (IgA). That was done on Thursday. They’ll call me when they do. Keep your fingers crossed for a normal IgA level!

The kidney scare made me realize that there are some things I want to do. It’s a possibility I could end up on dialysis some day, although I am doing my best to see that not happen. I drink 2-3 liters of water a day. I aim for 3, but sometimes I run out of time. I have to get better about that and pace myself.

I decided that I want to buy a mini-van so I can go on little trips with my dog! I will start looking this week. I also decided that I am going to close my IRA. There’s no tax penalty if the money is used to pay medical expenses. The truth is, I may not live to retirement age. I want to, but someone living with MM for over 20 years is a rare thing. I have decided to live for today as much as possible. If a cure is found, or some safe drugs are developed to manage the disease for decades, that will be great! I hope that happens soon. When that time comes, I can start saving for retirement again. As it is now, most people are losing money on their investments anyway, right?

My local oncologist’s nurse just called and asked me to come in to have some more blood drawn today. My labs last Thursday showed an increase in serum creatinine. When you have a normal baseline, and the level increases by 1.0 mg/dL, the manufacturer of Zometa (Novartis) says that treatment should be withheld. My previous serum creatinine was at 1.1 mg/dL and is now 2. I don’t think I want to risk an infusion tomorrow. There’s an alternative called Aredia, which is infused for MM patients over a period of 4 hours. Some feel it is safer for the kidneys. I have emailed Dr. Richardson in Boston to ask him what I should do. A level over 1.6 mg/dL is considered mild renal failure. A lot of MM patients are also on dialysis, and renal failure is up there on cause of death, along with pneumonia.

I went in and had the blood drawn for a creatinine re-test, as well as BUN, sodium and some other stuff (I already forgot what else it said on the paper). My results from today are bound to be affected by my being sick over the weekend. I am probably still dehydrated and could have depleted some electrolytes. I left a note for the doctor, explaining what happened so there wouldn’t be any alarm over any unusual results. I would guess that I’ll probably have to have a retest in a few days or a week.

I called the chemo nurse at outpatient oncology and told her I won’t be in for my appointment tomorrow. I forewarned her that I will be switching to Aredia at a 4 hr infusion time. She said, “Oh my goodness. That will require some careful scheduling.” They are used to doing it at 90 minutes.

Some people use the 4 hours to catch up on reading. I might do that too. I have books I would like to get through.