Category: Myeloma


IgA up

Since I stopped the high dose dex and went to standard dose, remaining on 25 mg of Revlimid per day (21 days a month), my IgA has gone up. So has my m-spike. Not so much at first glance, but it is a 20% increase. I emailed my doc to see about having the stem cell harvest done soon. Don’t get this confused with having a transplant too though. I still haven’t made up my mind about that!


We have noticed over the past couple of years that people find our site, using search phrases like ???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 didn???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 it???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 can???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 couldn???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 other???s company up to the end.

What???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 patient???s beliefs, plans should be made in advance to contact the appropriate clergyman or religious representative. Where the patient requests a ???last rites??? 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 can???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.

6th Cycle of Rev/dex

Today I started my 6th cycle of Revlimid and dexamethasone. I’m on standard dose dex now, which is 40 mg a day on days 1-4. I take the Revlimid for 21 days. The last 2 months, my blood tests have shown my MM to be stable and at a quite low level. In May, IgA = 488 mg/dL, with two M-spikes: 0.1 and 0.2. In April, it was just a few mg/dL higher (493) and the M-spikes were the same.

I want to make one thing clear for people who are searching for the Beth Morgan who is a porn star. I’m not that Beth Morgan. I’m the one who has myeloma. Frankly, I’d rather have myeloma than be a porn star. So, if you landed here because you were searching for that Beth Morgan, move along — or better yet, learn something about myeloma and make a contribution to the International Myeloma Foundation.

Revlimid: Possible Side Effects

This is from ePocrates

Common Reactions

back pain
peripheral edema
muscle cramps
dry skin
abdominal pain
peripheral neuropathy

Serious Reactions

severe birth defects
rash, severe
multiple organ failure

IgA and M-Spike

I got the results of my blood tests yesterday. My IgA and M-spike are the same as last month. There are two m-spikes: 0.1 and 0.2 g/dL. My IgA is 488 mg/dL. Last month it was 493. My WBC is lower than it’s ever been before, but still in the normal range, so nothing to worry about. I’m a little anemic, but nothing to worry about yet. This could be from the Revlimid. Most likely is. I have a week off starting today.


Yesterday I was at Dr. P’s office to have some blood drawn. I’ll go back again next week for Zometa and to get the results from yesterday’s labs. I mentioned that, since I went to standard dose dex, I’ve been having a lot more problems with queasiness and nausea. They said they can call in something for me to take when I need it. They use compazine and ativan in combination. However, since I’m still in a trial, they want me to get permission from the doc at Wake Forest first.

Speaking of Wake forest, they were recently in the news. Google this: White blood cells from a strain of cancer-resistant mice cured advanced cancers in ordinary laboratory mice, researchers at Wake Forest University School of Medicine reported. And this: Wake Forest Physician Reports First Human Recipients of Laboratory-Grown Organs.

I’m lucky I live where I do. I’m within a reasonable driving distance of three really great research hospitals: Wake Forest, UNC Chapel Hill and Duke University. The Wake Forest Clinical Cancer Center is my favorite so far. :) It’s shiny & new!

M-spike from test on 5/3

This is the result of my SPEP on May 3.

Hi Beth, Your results from 5/3/06:

M-spike in beta 2 = 0.2, gamma 0.1. Last results I have are on 3/8/06 when M-spike in beta was 0.3 and gamma was 0.2.

Let me know if questions.