Month: June 2006


Persey (nickname for Persephone), a little schipperke was put to rest today after the vet diagnosed her with kidney failure. She was 16 years old. She also suffered from Cushings. She was a puppy that I got those many years ago, but could not care for her and almost immediately gave her to a friend. She’s no longer suffering, and we will see her again one day.

Keep your pets inside, please

For reasons I can’t elaborate too much on, I want to urge everyone (no matter where you are) to keep you pets indoors. If you MUST have them out, do not do so without being there to supervise them. I have a good reason for saying this. A few weeks ago, my mom’s cat was killed by a human being. Her cat was taken from her yard and killed. She was brought back after having been cut in half. There was NO blood left. Only the back half of the cat was returned. I can’t say anymore, because I don’t want to interfere with the investigation. Please, please, please! Keep your pets indoors! This is something that is happening all over the country. It doesn’t matter where you live. If you love your pets, don’t allow them outsinde unless you’re willing to stay with them. If you don’t love your pets enough to do this, please take them to a rescue or no-kill shelter so they can be loved by someone who will care about them.

Sinus infection rerun

After I took the 5 days’ rx of Levaquin for my sinus infection, I felt fine for a few days. I think I need to stop swimming for a while though, because the sinus infection is back again. Maybe it never was really all the way gone. Anyway, from what I’ve been reading, I’ve gathered that swimming is bad for someone prone to sinus infections. Not that I’ve ever been prone to them, but, when you have myeloma, you may find yourself suffering from various infections that never bothered you in LBM (life before myeloma).

Here’s some good info on sinusitis:


Last week I called my doctor about my never-ending cold. I had a sore throat for what seemed forever, and evidence of a sinus infection. Like a lot of people, I just thought if I waited long enough, it would go away. It didn’t. I got a prescription for Levaquin (500 mg) for 5 days. I have one more day to go. I have to say the stuff works! It’s not without its own set of side effects though. Who can tell what cause what when you’re on a bunch of different drugs though? Anyway, learn from my mistake (even though I never do). If you get a cold and it doesn’t seem to want to go away, call your doctor!


I’ve been reading things about coffee, such as it can help regulate blood glucose levels and that 4 cups a day can reduce the odds of getting cirrhosis of the liver by 80 percent. The reports never say if decaf works as well as caffeinated coffee. I quit drinking coffee because the caffeine makes me have PVCs and it usually makes me feel kind of sick anyway. But, I saw some coffee in the store made by Folgers that’s supposed to be stomach friendly. Has anyone tried it? I am about to get some, to see if it makes a difference. It’s called Simply Smooth.

I know that sometimes studies are funded by the industry, so I am going to try to look into that.

Free Blog at

We’re starting a free blogging site for patients and caregivers, or anyone interested in health topics. The basic stuff is there, and we need people to create accounts and test. Please give it a try:

Please create an account and try out all the features. When you run into a problem or have a question, use the online help form to submit your comments. Using your feedback, we can write the FAQs and make sure the blogging experience is easy for everyone.


We have noticed over the past couple of years that people find our site, using search phrases like é─˙Final Days of Myeloma” and “What’s It Like To Die From MM?” Not the easiest of topics to discuss, but it is something we should try to cover.

Years ago, back in the dark ages, when MM went undetected for decades, and the patient presented with so many different symptoms, doctors didné─˘t detect MM until it was far too late. Patients literally died of crumbling bones, high calcium, confusion and coma, or end phase renal failure. Now we know much more about MM:

A. We detect it earlier.

B. We treat it better.

C. We have better drugs available.

However, until a cure for MM is found; the end, whilst it can be put off for a long long time, is, at the time of writing, inevitable. The natural balance of our bone marrow and blood is tipped against us. Too much protein in our blood upsets our circulation and our kidneys and can leave us prone to other complications like Amyloidosis; excess calcium lost from our bones clogs up our kidneys and can cause cognitive impairment, as well as pathological fractures. The over production of plasma cells in the bone marrow leaves us open to infections, and our immune system deficient.

Few patients die from Multiple Myeloma per se. Most will acquire an infection like pneumonia, or suffer renal failure, or simply fall into a coma from hypercalcaemia – having too much calcium in the bloodstream.

What can happen? This is something we can be fairly certain of. Given that the health of the patient has not been compromised by a drug trial that fails (and this does happen, although rarely), then there are a known number of possibilities.

We know that MM leaves the patient vulnerable to outside infections; these can range from things like Pneumonia, CMV. hospital acquired infections (and whilst not wanting to be alarmist, there is a small chance of an MM patient contracting one of these), random viral and bacterial infections.

Renal failure is also a distinct possibility. MM and connected plasma cell dyschrasias like Amyloidosis, put stress on the kidneys because of an over-production of proteins. The small tubules of the kidneys can become blocked and their efficiency at removing waste severely impaired. This can also adversely impact on joints, where protein deposits are laid down in connective tissue and around cartilage.

Hypercalcaemia. Because Multiple Myeloma interferes with the bone resorption process, too much calcium can be lost from the bones and enter the bloodstream. At ité─˘s worst this will cause drowsiness, confusion and, ultimately, coma and death.

The most likely outcome is a combination of all three. The immune system starts to fail, the renal system cané─˘t cope with the pressure, and the amount of calcium in the blood slows down circulation.

What can be done? When all drug options have been used, or if the patient is just too weak for any further treatment, hospice and palliative care are the only options. My friend chose to die at home, rather than in the hospice; the local hospice couldné─˘t have been more helpful and caring.

Whatever was required in terms of hospital equipment, (like a proper hospital bed, wheelchair, bathroom adaptations) was provided without question. A nurse was on call all the times, and made house calls three times a day. The nurse was able to administer pain killers and any other medication required to make the patient comfortable. About a week before my friend died, she went briefly to hospital for an infusion of bisphosphonate (Aredia). This lowered her serum calcium, and meant that for the last few days she was coherent and not comatose. This was important to both her and her family – they were able to enjoy each otheré─˘s company up to the end.

Whaté─˘s it like? Nobody can answer this; but having witnessed the last few days of an MM patient, I can make some assumptions. First of all, there was no pain. There was a sense of peace and calm. First my friend stopped taking even tiny quantities of food and then her kidneys started to fail. Eventually she could not take any fluid, just something to keep the mouth moist. When the end came, I am told she simply went to sleep with her family around her. The end was relatively quick, only about seven days elapsed between the bisphosphonate and the last day.

What else? If the patient has an acute infection, hospital care may be necessary to maintain a quality of life to the end. With something like pneumonia, and this can be deadly, the doctors may decide to simply stop treating the disease. This might be because the drugs have become ineffective, they pneumonia has become refractory (resistant) to treatment; in a case like this, pain medication and oxygen would be administered until the patient is overcome by the disease.

Patients who have acute bone involvement would be given pain medication to make them comfortable, possibly a bisphosphonate infusion to prevent early coma.

Those who have kidney disease would probably be taken off dialysis and allowed to die quietly and pain free.

Spiritual needs: Many patients have very firm spiritual and religious beliefs. Whether the patient is in hospital, hospice or at home, it is not easy to predict when somebody is going to die. Depending on the patienté─˘s beliefs, plans should be made in advance to contact the appropriate clergyman or religious representative. Where the patient requests a é─˛last ritesé─˘ type of absolution, you would need to discuss fully and frankly with the doctors when this should take place. Other spiritual and religious needs should be discussed in advance with the doctors, hospital or hospice management, or in the case of a home decision, with the appropriate religious and civil representatives.

Finally: In most cases, the actual end phase for the myeloma patient would be calm,

pain free and peaceful. For relatives and caregivers, it is very hard to watch a loved one die, but this is likely what will happen. Some patients may have a quick end (due to a heart attack or something like that), but there is a good possibility that nothing else can be done to improve the health and welfare of the patient by the doctors, and you, the relatives and caregivers will have to watch the last days of your loved one. I cané─˘t make things any easier for you, but I hope I have explained that the patient will most likely pass away with no pain and a sense of calm and peace.

Copyright 2006, Chris Hollyer. All rights reserved.

Rev/dex trial results

ATLANTA, June 5, 2006 /PRNewswire-FirstCall via COMTEX/ — Celgene Corporation (CELG : news, chart, profile ) announced updated clinical data from two multi-centered, randomized, double-blind, placebo-controlled Phase III pivotal studies evaluating lenalidomide plus dexamethasone in previously treated multiple myeloma patients were presented at the 42nd American Society of Clinical Oncology (ASCO) Meeting in Atlanta, Georgia on Monday, June 5, 2006.

The updated clinical data from the pivotal North American Phase III trial

(MM-009) reported overall survival (p<0.0001) in addition to median time to disease progression (p<0.0001) in patients receiving lenalidomide plus dexamethasone compared to patients receiving dexamethasone plus placebo. The updated clinical data from the pivotal International Phase III trial

(MM-010) reported overall survival (p=0.03). As of June 2006, median overall survival in the International trial in patients treated with lenalidomide plus dexamethasone has not been reached as compared to 20.6 months with dexamethasone plus placebo.

Dr. Weber presented updated results from the North American Phase III special protocol assessment trial (MM-009) that reported:

* The median overall survival (OS) with lenalidomide plus dexamethasone

was 29.6 months, compared with 20.2 months for dexamethasone plus

placebo (p<0.0001)

* The median time-to-disease progression (TTP) with lenalidomide plus

dexamethasone was 11.1 months, compared with 4.7 months for

dexamethasone plus placebo (p<0.0001)

* Best response rate with lenalidomide plus dexamethasone was 59.4

percent, compared with 21.1 percent for dexamethasone plus placebo


* Complete response (CR) rate (based on EBMT criteria) with lenalidomide

plus dexamethasone was 12.9 percent, compared with 0.6 percent for

dexamethasone plus placebo (p<0.001)

* The most common side effects observed in this trial with the

combination of lenalidomide and dexamethasone were constipation,

diarrhea and neutropenia

Both trials were randomized, double-blind, placebo-controlled, phase III studies using lenalidomide plus dexamethasone versus dexamethasone plus placebo in previously treated multiple myeloma patients.

Patients in both lenalidomide trials had been heavily treated prior to enrollment, many having failed three or more rounds of therapy with other agents. In addition, more than 50 percent of patients in the study had undergone stem cell transplantation.

These trials were designed to investigate the effectiveness and safety of cyclic dosing of lenalidomide at 25mg combined with high-dose dexamethasone

(HDD) compared with placebo and HDD in previously treated patients with multiple myeloma. These trials enrolled 705 patients and are being conducted in 97 sites internationally. Lenalidomide and HDD are given in 28-day

cycles: lenalidomide 25 mg once daily on days 1-21 every 28 days, and HDD 40 mg on days 1-4, 9-12 and 17-20 every 28 days. After four cycles the HDD schedule is reduced to 40 mg on days 1-4 every 28 days). The primary endpoint of the study is time-to- disease progression calculated as the time from randomization to the first documentation of progressive disease based on EBMT myeloma response criteria.

In the North American trial, patients treated with lenalidomide and dexamethasone had an increase in side effects as compared to patients treated with dexamethasone plus placebo. Grade 3/4 toxicities included neutropenia, thrombocytopenia and anemia. Deep vein thrombosis and pulmonary embolism occurred in 14.1 percent of patients treated with lenalidomide plus dexamethasone, compared to 3.4 percent of patients treated with dexamethasone plus placebo.