Shorter Survival for Older Myeloma Patients??

Based on the treatment regimen, the following article copied in its entirety from The Myeloma Beacon , indicates that older MM patients may not fare as well if they've had an early (shorter) relapse. However, the article also states that studies are being done on younger patients. It seems to me that more testing should be done on MM patients in the 65+ age group, before any predictions are made relevant to that (our) age group.

Early Relapse May Be Linked To Shorter Survival In Elderly Myeloma Patients

According to a recent Greek study, elderly myeloma patients who relapse early after receiving therapy with novel agents have a significantly shorter overall survival time compared to patients who remain in remission longer. In addition, results showed that a poorer quality of response to treatment with novel agents is associated with early relapse in these patients.

“This study confirms other data that a [better quality of] response argues for a good outcome in patients with myeloma,” said Dr. Edward Libby from the University of New Mexico Cancer Center in Albuquerque who was not involved in the study.

However, Dr. Libby added that because the patients in the study were treated with different regimens, it is difficult to conclude why some patients did better and others did worse.

Based on their findings, the study authors recommended that elderly patients who experience an early relapse participate in clinical trials or receive additional treatment to try to improve their prognosis. They also encouraged efforts to identify patients who are at a higher risk for early relapse and to customize different treatment strategies for these patients.

Since their introduction, novel agents such as Revlimid (lenalidomide), thalidomide (Thalomid), and Velcade (bortezomib) have significantly improved treatment outcomes for elderly multiple myeloma patients compared to traditional chemotherapy.

Previous studies have shown that elderly myeloma patients treated with melphalan (Alkeran)-prednisone therapy, known as MP, along with either thalidomide or Velcade have a better quality of response compared to patients who receive MP without novel agents. All of these patients also have longer progression-free survival times, and some of them have longer overall survival times.

Another recent study has shown that the achievement of a complete response is a predictor of longer progression-free and overall survival in elderly myeloma patients who receive treatment with novel agents.
Improved treatment results with novel agents, however, have not always resulted in longer overall survival times in elderly patients.

For instance, results of a previous study indicate that thalidomide-interferon maintenance therapy following MP increases progression-free survival but not overall survival in elderly patients. Moreover, because thalidomide-interferon maintenance caused more side effects than interferon alone, the study authors stated that there was only a “limited benefit” for elderly patients to use thalidomide along with interferon as maintenance (see related Beacon news).

In order to shed light on whether quality of response is associated with progression-free survival and overall survival times in elderly patients treated with novel agents, Greek researchers analyzed medical data from 135 elderly myeloma patients treated at a medical institution in Athens.

All patients included in the study were over 65 years old. The majority of patients (84 percent) had advanced disease. All patients were ineligible for stem cell transplantation and received novel agent-based therapies. Fifty-five percent of patients received thalidomide-based regimens, 37 percent received Revlimid-based regimens, and 12 percent received Velcade-based regimens.

The researchers found that 28 percent of patients achieved a complete response, 23 percent achieved a very good partial response, and 30 percent achieved a partial response.

The researchers found that patients who achieved a complete response after initial therapy had a longer median progression-free survival time compared to patients who achieved a very good partial response or a partial response (31 months vs. 20 months and 23 months, respectively).  The same was true for overall survival (62 months vs. 53 months and 38 months).

Furthermore, the authors found that poorer quality of response increased the likelihood of early relapse, which in turn decreased overall survival time.

Whereas 21 percent and 39 percent of patients who achieved a very good partial response and a partial response, respectively, relapsed early (defined as a relapse within 12 months of completing initial treatment), three percent of patients who achieved a complete response had an early relapse.

Patients who relapsed early also had a significantly shorter overall survival time than patients who did not relapse early (15.4 months vs. 53 months).

By statistical analysis of these results, the authors determined that patients who relapsed early had over a seven-fold increase in the risk of death.

“[These findings] may argue that using our best therapies upfront to achieve a complete response is the right thing to do,” said Dr. Libby. “In many circumstances, combining new therapies early [during treatment] gives the best response.”

Thirty-nine percent of patients received a second line of therapy after they relapsed or their disease progressed.

The study authors noted, however, that secondary therapies did not improve treatment outcomes for patients who relapsed early.

“The fact that [the patients] in this study had a poor performance status overall may have affected their response and their ability to tolerate subsequent therapy,” suggested Dr. Libby.

As a follow-up to the study, Dr. Libby recommended larger studies to investigate effective therapies for elderly myeloma patients.

“Most patients with myeloma are older patients, but most studies to date have been on younger patients,” he explained.  “I think, overall, we need many more [larger] studies that focus on the elderly.”

Fair to middlin'................

The South, probably more than any other area of the country, is known for its "southernisms" ......our quaint little sayings. Some phrases sound corny, or country, or just plain red-neck to those "not from around here".

In the post office the other day, a lady was attempting to stuff a wrapped package into one of the Express Mail envelopes. She told the clerk to "mash it down" as much as he needed to. In another part of the country, you probably would have heard "press it down" or "flatten it down". (We might also say "mash the button" - instead of "push the button".)

While on our trip I saw a book, by a North Carolina author, of Southern sayings. I chuckled at the notice in the front, which stated in part that nothing from the book could be copied, or quoted. I wondered if this 'Southern belle' thought she was the only one privvy to Southern expressions. Heck, we've been saying fixin' to, over yonder, set a spell, a mess of turnips, I reckon, and many other colorful sayings all our lives.

Bob and I stopped by the Pharmacy, on our way home from Dr. H's office, on Friday. As we walked into Fred's Express, the Manager exchanged greetings with us. I asked how he was doing and his response was "Oh, fair to middlin', I guess".

As I thought about it, I realized that's probably a great way to explain how Bob is doing . He's not as likely as I am to come out with these Southern sayings, so I doubt he'll ever tell anyone "I'm fair to middlin".  (And, for those of you wondering.....it just means average, or about as good as can be expected.)

Yep, bless his heart, he is fair to middlin' !!!

A Roller Coaster of Emotions.....

Yesterday, a renowned and well-respected MM Specialist posted that most of his patients have tremendous anxiety about relapse; after the treatment ends (while in remission). He questioned how patients deal with their anxiety during this "new normal" period of their lives. He suggested exercise, meditation, massage, acupuncture, etc. rather than some type of anti-anxiety medication.

Bob tried the "anti-anxiety" medication early on, when it was decided that he was depressed. The medication that was prescribed was also supposed to help with the bone pain he was experiencing. If it helped with the pain, it wasn't enough to notice - and it seemed to do a great job of making him depressed! (Not what we were going for!!)

We are thankful that he is experiencing Near CR (Complete Response or Complete Remission) - some MM patients never do. I've thought about what will happen when the inevitable occurs.....and yes, it probably will, at some point. There is no cure, so Bob's Myeloma can come back. I've read that it's often as if one is hearing the diagnosis, again, for the first time. All those raw emotions return and must be dealt with and handled.

We've just returned home from a long (over 3,300 miles) road trip, and I think all the travelling might have taken its toll on him. He hasn't felt really well, so I rushed him off to the good Doctor H. when we got back on home territory. He's nauseous when he eats, and generally hasn't felt good. But, just like a car that's making a terrible noise - take it to the garage and the darn thing purrs like a cat! Don't you know, when Doctor H. asked him "How are you?" He perked right up, and said "I'm doing great!" And, when Doctor H asked him to get up on the examining table, he looked like he was spring-loaded!  About this time, I'm thinking this doctor is beginning to wonder what's wrong with me! (Since I was the one that made the call stating that he really needed to see the doctor ahead of his normal scheduled appointment!) His blood work looked good, so he really was doing great. The results of the M-Spike take longer, but there's no reason to believe that won't also be good.

I suggested to Doctor H. that maybe I needed to relax a little. I apologized for taking up his time, when Bob was obviously doing so well. (Couldn't he, at least, have acted like he felt bad!!) Of course, the good doctor assured me I'd done the right thing. (What else could he say?)   This "new normal" that we're now living is really hard on both of us. If he's nauseous, or tired, or feels bad - it MUST be the cancer returning. If he hurts, is it back? Is it the cancer returning? I know I've become a little (or a lot) like an old Mother Hen trying to protect her nest. And, I've learned that I need to lighten up and let go - because, when I get concerned, I make him concerned about himself. He asks "Is there something you aren't telling me?"

Late yesterday afternoon, as he was getting ready to fix our dinner (yes, he's doing some of the cooking again!), he suddenly let out a sound that I knew meant pain. I rushed to the kitchen to check on him, and he asked for his "white pill" (Dilaudid). He was in a great deal of pain, in his back, and I was concerned. The "white pill" finally did what it was supposed to do, and the pain subsided. This was the first back pain that he had experienced, since the nerve dennervation (burning).

Today, after a few trips in and out of the house, he was winded and needed to rest, and there was pain;  again, the "white pill" was required.  After awhile the pain subsided, and he felt better. (And, so did I!)

Along with Near CR comes a respite from treatments, but I think I anticipated that it would also mean a respite from pain, feeling bad, and being tired. It would mean that life would be back to normal.....but I quickly learned that it only means we live a different kind of normal.  Our "new normal" is nothing like the "old normal". Life, as we once knew it, has changed considerably.

The renowned MM Specialist is correct - there is anxiety about relapse. It's there .......in the back of our minds, and it hangs over us like dark clouds on a rainy day. It isn't as if we dwell on relapse - actually, we try to forget ......we try to forget that MM has invaded our lives and is now a part of our everyday life. We try to live "normally" - or as normal as possible. Many have lived with this disease, for years, and have been in Near CR, CR, VGPR, etc., so no one knows how long this will last.

Call it anxiety, call it fear, call it reality - or call it a miracle that he is in Near CR ............because many never are. We will enjoy this time of "new normal" or maybe it should be "near normal".

Could it be genetics?..............

We are spending this week, on the Outer Banks, with our beautiful eldest daughter Gale, (and as of Tuesday ) her new hubby Bill. It's a week that, on the one hand, is filled with sunshine, warm summer breezes, the blue waters of the Atlantic,  the sand that burns one's feet in the heat of the day, and sunbathers who have stayed too long in the blazing sun.

On the other hand, it's a week that has been destined to be joyous and light-hearted, no matter what. But, just under the surface, and in the back of our minds looms that word again.....CANCER.

Gale hasn't felt good for quite some time, and had begun to lose weight rapidly. After several blood tests, and a couple of doctor's appointments, we received the word (on Friday as we were travelling toward NC) that she has been diagnosed with Leukemia. She has an appointment with an oncologist, next Thursday, that specializes in this type of cancer. At that time, we will know the type and the staging.

Leukemia is a cancer of the blood and bone marrow, and it is in the same family as Bob's Multiple Myeloma. Is it possible that there is a genetic link? There are four major types of Leukemia, and like MM, the cause isn't really known (but genetics has been mentioned for blood cancers). Just as with MM, there have been many advances over the years in the treatment of Leukemia. We pray that it has been discovered quickly, and like Bob's, is treatable. We pray, and pray, and pray.

This week is a time of celebration, joy, and happiness. There will be time, too soon, for dealing with this.....and once again.....coping. Coping - that word that has become such a part of our lives, and something that we've learned to do quite well......but not when it's our child.

As many of my friends have said....."It's not about waiting for the storm to pass, it's about learning to dance.....in the rain". 

Coping is always necessary.......

Coping: The process of managing taxing circumstances

There are many helpful pamphlets, books, websites, etc., for caregivers and family members, on handling every type of stressful situation. How to cope with grief, and loss, and stress, and life, and bullies, and divorce, and illness.......and cancer.

When Bob was diagnosed with Multiple Myeloma, I had to  learn to hone my coping skills.  Admittedly, at first, I didn't cope very well. It wasn't just the actual diagnosis of cancer that sent me reeling, it was the fear of the unknown, and what lay ahead.

I wasn't a "hand-wringer", but I certainly wasn't cool, calm, and collected, either.  It didn't take long (and no, I won't say how long) for me to learn that I had to dry the tears, perk up the ears, open my eyes, and take charge........COPE!! 

Finally, we were able to manage the pain. We got the meds under control. Life was beginning to settle down....we were into a routine. He was the patient, and I was the caregiver and boy was I coping!

Then, the game suddenly changed! Week-by-week he was getting better. He was improving. His M-Spike was unremarkable, undetectable. Life was changing. He didn't need as much "managing", but I now had my coping skills honed to perfection......what was I to do?

Bless his heart (and mine, too)......I grew accustomed to helping him in so many ways. Now, he doesn't need so much "caregiving" (for which we are abundantly thankful). It's a lot like raising a child.....you shield and protect them when they're babies, and once they begin to walk, run, and climb; it's hard to turn them loose knowing they'll get all those bumps and bruises.

I watch him as he walks down the back steps ....and I can't help but say "be careful, hold on, don't fall". I know, and he does too, that a fall is the last thing he needs. He just says "yes, dear" (he's gotten really good at that phrase)!    

So now, I'm into a new phase of caregiving....and coping. It's called "letting go". Letting him get back to normal, or as normal as he can be. Once again,  I'm honing my coping skills, but this time they are surrounded by smiles, not tears! 


     

A Rest Area on this Journey......

On Tuesday,  Bob and I met with Dr. H., and we heard the words "Near Complete Remission"! 

His M-Spike is still undetectable, but the Immunofixation testing shows IgG monoclonal protein with kappa light chain specificity (there are still traces of myeloma cells present).

Except for the neuropathy in his legs and feet, he's doing great. We're keeping our fingers crossed that a break from the Velcade (chemo) may bring him some relief. He'll return monthly for Zometa infusions to strengthen his bones, and for lab work to insure that the cancer is continuing to "rest". Is there a plan? Yes, taking one day .....at a time, and enjoying life!  

What a difference a few months, a great oncologist, the correct treatment, faith and prayers can make in this journey.

Perhaps, with continued prayers, "near" complete remission will evolve into complete remission, and the rest area on this journey will become our permanent parking place!