Beth’s Blog

Autologous Stem Cell Transplantation in Patients of 70 Years and Older With Multiple Myeloma: Results From a Matched Pair Analysis

Thanks to Carol for finding this new study.

Autologous Stem Cell Transplantation in Patients of 70 Years and Older With Multiple Myeloma: Results From a Matched Pair Analysis
Am J Hematol. 2008 Aug 1;83(8):614-617, SK Kumar, D Dingli, MQ Lacy, A Dispenzieri, SR Hayman, FK Buadi, SV Rajkumar, SV Rajkumar, MA Gertz

Multiple myeloma (MM) accounts for 1% of all malignancies and approximately 10% of all hematologic malignancies. In the United States, an estimated 19,900 new cases of MM were diagnosed in 2007, and 10,790 patients were expected to die of this disease. Patients with MM have a median age of onset in the seventh decade of life and 3- to 4-year median survival when treated with conventional chemotherapy. Newer combination chemotherapeutic agents have not improved the survival outcome achieved with melphalan and prednisone, which have been used for >30 years. High-dose chemotherapy (HDT) followed by autologous stem cell rescue has resulted in improved survival and quality of life compared with conventional strategies. For patients with MM who qualify for HDT, this approach has become the standard of care.

Many of the larger clinical trials in which HDT was examined only included patients <65 years of age. However, a significant proportion of MM patients are >65 years. Therefore, it remains unclear whether the benefits observed in younger patients would extend to an older population. This case-controlled study evaluated the outcome of HDT in patients with MM who were >70 years.

A total of 93 patients were included in the study. All had undergone HDT and stem cell transplantation for MM. The study group included 33 patients >70 years and a matched control group of 60 patients <65 years. The baseline characteristics of the 2 groups were comparable, with the only difference being the type of conditioning regimen used. The dose of the melphalan conditioning regimen was reduced in 30% of patients in the elderly group as opposed to only 5% of patients in the younger group.

A trend toward a longer hospital stay after transplant was noted for the elderly vs the younger group (8 vs 3 days). By day 15, engraftment occurred in 94% of the elderly group vs 78% of the control group (P = .08). The adverse reactions most often seen were nausea, vomiting, hypertension, and tachycardia; no significant differences between the groups were evident. The overall response rates were 97% and 98% for the elderly and control groups, respectively. A complete response was achieved by 42% of the elderly group vs 28% of the control group. The patients were observed for a median of 27.2 and 38.3 months in the elderly and younger groups, respectively. The post-transplant median overall survival duration was 53.3 months in the younger patient group; the elderly patient group did not reach its median overall survival during follow-up. In the subset of patients receiving reduced-dose melphalan, there was no difference in time to progression or overall survival compared with
patients receiving standard-dose melphalan.

Previous trials have clearly shown a benefit of HDT in patients <65 years of age. However, investigators have not studied the benefit of HDT for patients 70 years of age and older. This study showed that patients older than 70 years have outcomes similar to those in younger patients (<65 years of age). The treatment-related mortality rate and the kinetics of engraftment were similar between the 2 study groups. Despite a greater proportion of the older group of patients receiving a reduced dose of melphalan, no significant differences were evident with respect to response rate or time to progression between the 2 groups. This retrospective study showed a benefit for patients >70 years who underwent HDT for MM. Age alone should not be the sole factor used when evaluating whether a patient is eligible to undergo HDT. Dose reduction should be considered for the older population of patients when appropriate.

IgA is pretty stable

This is a chart of my IgA values since before the SCT last summer.  I stopped Velcade and Doxil in July, 2007 and the SCT took place at the end of August. This is quantitative serum IgA in mg/dL. The test on 10/11/2007 was the first one I had after stem cell transplant.

I’ve never once regretted having the SCT, and only wish I had done it earlier. In my case, nothing was keeping the mm under control for very long. The SCT has allowed me to be off treatment for 10 months now, which is a long time for me.

Duke allows me to look at my lab results online, and I’ve been waiting to see what my m-spikes are (I have two).  So far, they’ve stayed under 0.5 g/dL when added together.  That’s so much better than the 3.4 g/dL they were back in 2003.

The reference range at Duke’s lab for IgA is 46 - 287.

Chronic Graft vs. Host Disease Web cast

I just got this via email.

The National Bone Marrow Transplant Link is working with Dr. Steven Pavletic and his staff at the National Institutes of Health to develop a web cast on Coping with Chronic Graft vs. Host Disease.  The 30-minute presentation will provide an overview of cGVHD, recommendations for care of the cGVHD patient, and personal reflections from current cGVHD patients and their caregivers. The web cast will be launched on our web site, www.nbmtlink.org late this summer. We are grateful to the National Marrow Donor Program for supporting this product

MMSupport.net unveils “Ask the Expert”, featuring Multiple Myeloma physician and scientist, James R. Berenson, M.D.

MMSupport.net unveils “Ask the Expert”, featuring Multiple Myeloma physician and scientist, James R. Berenson, M.D.
 
Ask the Expert is a free online web-forum where Myeloma and Bone Cancer specialist, Dr. James R. Berenson offers medical answers to questions surrounding quality of life and longevity issues for patients living with this rare form of cancer.
 
Los Angeles, CA – MMSupport.net and the Institute for Myeloma and Bone Cancer Research are proud to announce the creation of “Ask the Expert”, a free online web-forum featuring Multiple Myeloma expert, Dr. James R. Berenson.
 
MMSupport.net is the creation of myeloma-advocate, Beth Morgan.  The website serves to foster community in the form of an online forum where patients and caregivers could learn more about Multiple Myeloma, a plasma cell cancer that resides in the bone marrow.  Thousands of people visit MMSupport.net every day.  Many visitors are Myeloma and Bone Cancer patients, caregivers and other medical professionals who actively participate in online discussions about treatment options and personal experiences.  “Ask the Expert” is the latest addition to the MMSupport.net website and is available at no charge by registering on the site.  Visit www.mmsupport.net for more information.
 
James R. Berenson, MD has 25 years experience in treating Multiple Myeloma and Bone Cancer patients.  Dr. Berenson is CEO and Medical Director for The Institute for Myeloma and Bone Cancer Research and CEO and President of Oncotherapeutics, an oncology-specific clinical trials management service.  Dr. Berenson is an active clinician who treats patients daily in his Los Angeles offices and acts as a specialist consult to patient’s primary oncologist or primary care physician throughout the world. For more information, visit www.berensononcology.com
 
The Institute for Myeloma and Bone Cancer Research, based in Los Angeles, California, is an independent cancer research institute with a primary focus on hematologic cancers.  Established in 2004, the IMBCR is a 501 c (3) non-profit organization.  Over the last four years, the IMBCR has created novel breakthrough therapies that have substantially increased the longevity and quality of life of myeloma patients. The latest initiative at the institute is “The Cure Myeloma Project”, a multi-year research project that targets myeloma cells while keeping the non-cancerous cells intact.  For more information or to make a donation, visit www.imbcr.org
 
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Media contact:
Beth Morgan, MMsupport.net beth.morgan@connectnc.com or,
Cheryl A. Cross, MPH, Institute for Myeloma and Bone Cancer Research ccross@imbcr.org 866-900-1035

Eye doctor

I’m seeing the doctor this afternoon about my left eye. Here’s where I’ll be:  Carolina Eye Associates

Here’s a new picture of what the rash looks like.  Don’t click on the thumbnail if you don’t want to see it.  I think it’s hideous.  I try to stay in so that I don’t attract mobs of torch-wielding villagers out in front of the house.

I’m still taking the 500 mg  of Famvir three times a day and am taking some oxycodone as needed.  I never thought I’d say this, but I wish I had some dex.

Dr. Durie Appears on the NBC Nightly News (but neither of them is him)

Fighting multiple myeloma - Click on this link or the picture to see the video.

“Six Months” features MM Patient

I just ran across a program on the Biography Channel called "Six Months."

The program is about people living with deadly diseases, one being multiple myeloma. If you’re on the US west coast or central or mountain time, you can still catch tonight’s showing.

There are two more upcoming showings:

Thursday, December 6 3:00am
Saturday, December 15 1:00pm

From the Biography Channel web site:
Six Months: This emotional and heart-wrenching special features the stories of real people who are making the journey through the final months of their lives. After Eric and Janice both receive a terminal diagnosis, they quickly begin to see things from a unique perspective, and they challenge others to examine their own lives for the things that are truly important.

Janice has MM. Eric has a form of sarcoma.

I hope you can see this program. I haven’t found that it’s available on DVD, but if I do, I’ll post details.

This is Janice Chaffee’s web site: http://www.janicechaffee.com/.   MM took her life in early 2007. You may remember seeing the notice if you subscribe to Google Alerts.

Be prepared to cry.

Take care, everyone.
Beth

This is a Neostar Triple Lumen Catheter

This is the Neostar triple lumen catheter I had at Wake Forest last year.  It was noticeably heavier than the hickman double lumen. I had this thing in a plastic bag for almost a year. It had never been taken out and cleaned since it was removed, so you can imagine how gunky it was.  I tried to flush it with bleach and water, which wouldn’t go through due to a clog.

The Hickman (Bard) catheter I had at Duke during the summer can be found here.

I think it’s time for a new blog theme.  I’ll be on the lookout.  Expect a change soon!

Some lab values

I got the results of the tests done Monday at Duke. The full report was faxed to my office, and I haven’t seen it yet, but here’s what I have so far.

M-Spikes (I have two m-spikes)

Last month: 0.19 and 0.12 g/dL (Total is 0.31 g/dL)
This month: 0.16 and 0.22 g/dL (Total is 0.38 g/dL)

Immunoglobulin Profile

Last month: IgA 374 mg/dL Reference: 46-287
This month: IgA 465 mg/dL Reference: 46-287 (up 91)
Last month: IgG 709 mg/dL Reference: 588-1573
This month: IgG 603 mg/dL Reference: 588-1573 (down 106)

I have July and August here. Needless to say, I was fervently hoping for a drop in the IgA and an increase in the IgG.  The one good thing is that the IgG is still in the normal range, where it has never been since I learned I had MM.  It was usually below 300 mg/dL.

Can someone give me a good explanation about why I have two m-spikes? I’ve asked doctors about a zillion times, and I have either forgotten what they told me or didn’t understand it well enough to even remember.

Hair Update

I thought I’d give a visual progress report of my hair growth.  Here’s a picture I took today.  You can compare it to one I took on October 13, 2007.

Kind of weird, huh?  And, not too attractive. My hair started to fall out in September, after I had high dose chemo (melphalan) on August 28th. Some spots still look bald, even though there’s a covering of very fine, nearly invisible hair.

I had a follow up appointment at Duke today.  I won’t have any results until Wednesday afternoon.  Not anything important, anyway.  I didn’t even bother getting a copy of my CBCs. Dr. Long just told me they were completely normal. Throughout my entire MM experience, my CBC’s have hardly ever been anything but normal.

Hickman Catheter

This is a picture of the Hickman catheter that was installed in my chest for the stem cell collection and SCT during the summer. You can see a picture of the insertion site here.  I got the idea of taking a picture from Eric Vogt, who photographed his from tandem SCTs.

You can see a picture of the Neostar triple lumen catheter here. That’s what I had inserted at Wake Forest prior to chemo and stem cell collection.

New hat

This is a new hat brought to me from New Mexico by Sharon. Isn’t it beautiful?

Here in NC, we’re under voluntary water restrictions due to extreme drought conditions. Some of the people in my neighborhood are ignoring it though. I’ve noticed a few people washing cars at dusk, so as not to attract attention to themselves. I think we should have mandatory restrictions statewide. Some cities are fining people for car washing and watering lawns.

Test results

I got the results of the tests done last week at Duke. The report states, “Compared to 8/3/07, no significant change in previously characterized IgA lambda components from 0.28 to 0.19 and 0.12 to 0.18 g/dL.” The PA let me know that it’s possible for the m-spike(s) to drop more in the next few months. One good thing is that my IgG is normal for the first time in five years (probably a few more). It was 223 in February, 2003, for example.

Immunoglobulin Profile
IgG 709 mg/dL Reference: 588-1573
IgA 374 mg/dL Reference: 46-287
IgM 29 mg/dL Reference: 57-237
IgE 12 mg/dL Reference: 4-269

Uncle Fester

I think I look like Uncle Fester. All I need is an ankle length black coat with a (faux) fur collar. If you run across anything like this, let me know. I need one for my wardrobe.

You probably think I’m just joking!

It seems like little bits of hair are starting to grow. I predict that I’ll have what could be thought of as a normal amount of hair by spring. I can’t remember what happened last year. It seemed as though I had a short curly head of hair by spring.

This is what my head looks like now.

One Month Check-up

Tomorrow I’ll have my one month check-up.  It will have been a month since I was released from the Duke SCT Clinic.  I feel pretty well, with no major complaints. I’m filling a jug for them, and will have blood drawn when I get there.  Aside from CBCs, it will probably be at least a few days before I get any results.

Sir?

Why would anyone call me sir?  I was pumping gas today, wearing my IMF cap to cover my bald head.  I had on flowered pants and a neon orange t-shirt with a cartoon dog on it, for crying out loud. Plus, I’m only 5′ 5″ tall, not to mention other obvious attributes. There’s no way anyone could mistake me for a sir!  It happened last year when I lost my hair too. I think hair must be more important to how people perceive another person than I realized.

Remember Julia Sweeney’s Pat character? I don’t even own any clothes like that.

I’m here

It’s been a while since I posted.  I’ve just been taking it easy.

I’ll have my (close to) 30 day check up at Duke soon, and maybe I’ll find out that my m-spike has gone down.  My local doctor let me sneak in a SPEP a couple of weeks ago, and I was surprised to see that the results weren’t much different than they were in July.

Today I walked 2 miles. I’m working my way up to 3. I even have a workout buddy, so I’m more motivated to do well. The time goes by a lot faster and is much more enjoyable when you have someone to talk with while you’re exercising.

Almost a week

Tomorrow it will be a week since I got home. I’ll have an appointment with my local oncologist for a blood test. I’ll have a weekly blood draw until I go back to Duke in about 3-4 weeks. I don’t even remember when my appointment is, so I’m counting on them sending a reminder!

I think it will be a good long while before I leave home again. I keep finding things that remind me not to trust people. For example, in my back yard someone took an old broom and burned the end of it off. There’s an ashtray on my deck with cigarette butts in it. Things are missing (including prescriptions like percocet and xanax).

I have some lingering side effects from the SCT. There’s fatigue, which must be from anemia (I’m guessing). My eyes water constantly. I have a lot of trouble getting to sleep at night. The first several days I had achy legs, but that’s better now. I have what looks like mild rosacea. I feel like I lost muscle mass while I was gone, because my legs are weak. I’m walking every day, but probably not as much as I should. Last, but not least, my GI tract is still not normal. I was told it could take up to a month for that to get better. I plan on writing more about what the mucositis was like. I’m just not sure when. My concentration is weak, so writing is a chore. Oh! If you’re waiting for a reply from me via email, I promise to get that done soon.

Home at last!

I made it home yesterday.  I’m SO glad to be here. I went straight to bed when I got home, and slept for what felt like forever.  I got up at 5:30 this morning, walked the dog and then went back to bed until 10:30.  It felt great to sleep in. It’s nice not to be on anyone else’s schedule.  I found myself feeling bored this afternoon, but that passed.

Thanks to everyone who made this easier for me.  You all know who you are. Thanks especially to Rachel and Monica.

More tomorrow!

Day +14

I’ve just been told I’m going home tomorrow! I feel as well now as I did when I came in here, so I can only imagine that things will get better and better as time goes by. Years of drugs and chemo take their toll. This procedure will give me the best possible chance of having some long drug-free time.

I do feel tired, but that’s because my HGB hasn’t returned to normal yet, and there was that high dose melphalan a couple of weeks ago. I’m sure it takes time just to get over that assault.

When I get home, I’m starting a new life. I’m going to take good care of myself and make it as difficult as possible for the myeloma to come back.

Oh!  I get this catheter out tomorrow!  That alone is worth some celebration.

Day +13

My WBC today was 7.0! My HGB dipped a little to 9.8, and the platelets are at 23. This chemo experience was a lot like Cytoxan, in terms of what it did to my counts, with the exception of the WBC, which got to 400 at its lowest.

Overall, the experience wasn’t as horrific as I imagined. I wouldn’t call it a vacation though.

I met someone here who had an allo transplant, which did not engraft. There was no match for her in the national registry. She had to use her son’s stem cells, which they said didn’t match. There were limited donors because she’s an African American. I wanted to find out if anyone has run a donor drive? I would like to try to help somehow.

Day +12

The only thing I have to report today is that my WBC is 4.7! Can you believe it? As soon as I get the rest of the results, I’ll post them. It was mentioned that I might get to go home earlier than predicted.

I forgot to mention that I had my head shaved on Saturday.  My hair started to fall out some, so my sister went ahead and gave me a buzz cut.  Since then, it’s been falling out like crazy.  I could be bald in a few days.

Labs

My WBC was 1.3 today, which is quite an improvement over yesterday (0.3).  My nurse tells me it wouldn’t be a stretch for it be double that tomorrow.  I could be going home as early as Friday.  I hope I can.

I’m 46 years old, but it bothers me that my parents don’t call every day to see how I am.  In my fantasy, they would call to ask my sister how things went every day.  They would even ask to talk to me. My mom, who lives about an hour away, would come to visit often.  The truth is, if I say nothing, they won’t even know when I’ve returned home.

Day +11

It’s been 11 days since the first day my stem cells were infused. Time seems to be passing by very slowly, which can be torture at times.

I’ve been having some issues at home, which make me wish I was out of here and back home. My dog is going to be boarded Monday, I hope, which will resolve one of the problems I have. My housesitter has been unreliable, and I’ve found out that my dog has been left alone some nights. I also found out that my cat was left shut in a room for at least a day with no way out. It’s too hard to have to worry about getting better and what’s happening (or not happening) at home.

I called my neighbors, and they’ll keep an eye on things for me.

Other than that, I can report that my WBC went up yesterday to 0.3 from 0.2. My platelets were low at 14, and my HGB was 9.6.

Overall, I feel ok. I’m tired, so I just sleep when I need to. The mucositis is getting a little better. Not so much in the lower GI area, but better in mouth and throat.  Oh, except that I hurt my throat this morning on a sharp piece of English muffin.  The English make some dangerous food, so beware.

I’ve had some very strange problems with two of my toes.  They’re extremely black & blue.  I’ll have pictures, of course.

I’ll get my labs soon, I hope, so I can report on today’s results.

Day +9

I had some good news today.  My white count doubled!  It went from 0.1 to 0.2.  Progress is being made.

I need platelets and potassium today, so I’m going to get hooked up and I’ll write more later.

Joyce is in treatment area B, too, but she’s in a room by herself.  I think that’s meant to protect us all from the icky stem cell smell.  My new nickname for her is “stinky.”