Category: Myeloma


The Rev/dex EAP

I started the Rev/dex extended access protocol in January, 2006. When I began, my IgA was about 2300 mg/dL and my m-spike was 1.5 g/dL. By the end of April, my m-spikes (I usually have two) totalled 0.3 g/dL and my IgA was in the 500s. Since then, those values have gone up a small amount.

The Rev/dex EAP called for 25 mg of Revlimid for 21 days, then a week off. For the first 4 months, the dex was high dose. 40 mg/day for 4 days, then 4 days off. I took the last week of the cycle off from dex as well, so I had one drug free week every cycle. The high dose dex was difficult for me, due to the crash I experienced. My doctor suggested tapering the dose, which worked well.

Day 1: 40 mg
Day 2: 40 mg
Day 3: 40 mg
Day 4: 24 mg
Day 5: 12 mg
Day 6: 6 mg
Day 7: 2 mg
Days 8-14 off
Day 15 – 21: same as days 1-7
Days 23-29 off

Starting in May, I began standard dose dex, which is 40 mg a day on days 1-4. Just 4 days a month. My schedule for Revlimid is still the same.

I chose Revlimid because I think taking pills at home is easier than driving someplace for some kind of systemic chemo. It’s not without side effects for me though.

During the first few weeks of treatment in January I suffered from terrible headaches. I think I adjusted to the Revlimid and no longer had headaches after the fisrt 2 weeks. Throughout this treatment, I’ve been plagued with diarrhea. Once the high dose dex was over, I began to experience nausea too. I believe the dex was keeping it under control before.

For the nausea, the doctor prescribed Compazine and Ativan. I think the Ativan works better than Compazine. I also think I feel less queasy if I don’t let myself get hungry. It seems as though I need to eat constantly, but not too much at a time.

Towards the end of May, I began to experience a sore throat and post nasal drip. The PND is thick and has been impossible to get rid of. To be on the safe side, my PCP has prescribed 2 different antibiotics, neither of which had an impact. This makes us certain it’s not a bacterial sinus infection. I’ve learned the most un-ladylike skill of “hacking” up gunk from my throat. I haven’t found anything that just gets rid of the condition though. I’ve tried decongestants and use a saline nasal spray regularly.

The Rev/dex EAP worked well for me. Although my markers have gone up a bit, a trend has not yet been established, so I’ll stay on it until I decide to do something else. I wonder though, how much of its effectiveness was due to the high dose dex since my numbers went up when I switched to standard dose?

Dex and blood sugar

This is a valuable bit of information about steroids and blood sugar sent to me by a list friend who is an MM sufferer and MD.

Transient elevations of the blood sugar do very little harm, diabetes is a long term disease. You have to have persistent elevations of your blood sugar over decades (yes decades) to see real end organ damage. An occasional spell of elevated BS is of very little concern. That said, I am in no way supporting a life style of not watching your blood sugar, good control of the BS is important. The scale is important too, in other words, a BS of 125 is more of a flag, a BS of 350 is out of control and needs action because of the related effects (vision, kidney, dehydration etc).

There is a test I would highly recommend, the HB A1C. This is a marker that does NOT respond to rapid changes in BS, but will drift upward if the BS is persistently elevated. If a patient comes in with a BS of 275 but is normal all other days, the A1C will be normal. We use it to monitor long term control. On the other side of the equation, if a patient has an elevated A1C, that means he/she must be out of control most of the time even if they are normal the day of the office visit. If you are having intermittent elevations of your blood sugar, a HB A1C is a good test to run. A normal value for the A1C would be very reassuring. It is a cheap test and widely available.


IMF Seminar in Philly

Who will be at the IMF seminar in Philly? A friend and I are going to drive up. I’m going to try to get the MMA list members who will be there together after dinner Saturday night. I know of a few that will be there. If you’re going to attend, please leave a message!

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