Should this myeloma warrior back in remission get another stem cell transplant? If only I had a crystal ball...

To Transplant (Again) Or Not? The Million Dollar Question     

BY LIZZY SMITH for www.myelomacrowd.org

In mid February, I was getting ready to head out for the evening. My phone rang. It was Mary, my PA from Huntsman Cancer Institute where I’ve been treated since my 2012 diagnosis.

“I’m sorry to have this conversation with you over the phone,” she said. “But I’m looking over your latest labs and it looks like there is disease progression. You are no longer in remission.”

The banality of bad news. It’s so ordinary and comes without warning.

With shaking hands, I took copious notes of some lab numbers that I can’t remember. Oddly enough, it took just a few hours before I calmed down. I literally talked myself off that cliff as I reminded myself that myeloma is a journey not a destination. I had survived tandem stem cell transplants and got two and a half years of remission. I kicked cancer in its a** once and I could do it again. I went to clinic the next day to pick up that horrid 24-hour urine collection jug and had a bone marrow biopsy (not my favorite test, to be sure, especially since I never get sedated for it). Days later, it was time for an appointment with my oncologist to go over the facts and plan.

Sure enough, Dr. A confirmed, I was out of remission and I was to start the triple-drug combo done in the ASPIRE trial: Carfilzomib twice per week, 40 mg of Dex once per week (double the dose that I had been on, yuck), and daily Revlimid. Three weeks of this regimen with a week off. My fiancé, Bill, and I were getting ready to head on our trip to Argentina, Brazil and Uruguay just a week later. They cautioned me against going: it was important that I follow the drugs exactly as was done in the trial and if I went on the trip, I would be “off” that schedule by some five days. Perhaps it would make no difference but then again, it could.

I thought about this advice for about 10 minutes. I wanted to go on the trip. It was too late to cancel and traveling is my passion. While I don’t necessarily recommend anyone follow my example, I made the decision to proceed with the trip. Should other myeloma warriors do the same? I would never advise either way. Our journeys are our own, each is intensely personal, and there are no hard answers in myeloma. We just have to listen to great doctors and eventually just press forward with a decision that we make. And so I did.

I started my new treatment combo that very day and boarded a plane as scheduled bound for Buenos Aires just hours after my second Carfilzomib infusion appointment. Bill and I had a fabulous vacation and when we were in Montevideo, Uruguay I randomly told him that I felt I was already back in remission. Why, he asked? I didn’t know, I just “felt” it.

My new treatments have, overall, been going well. The side effects are less intense than my prior combo of Thalidomide-Dex-Velcade. I experience less fatigue and my chemo brain seems to (slightly) have ebbed. I hate the extra day I spend in clinic (dang, cancer can be so time consuming!). On the days I take Carfilzomib, I sometimes wake up in the middle of the night with mind-blowing leg and foot cramps that make me cry out in my sleep. And thanks to the double-dose of Dex, even with two Ambiens, I still can’t sleep more than two hours. The day after Dex, I am indescribbly tired. Still, I don’t complain much (after all, I’m alive!). I cope by knowing that on Mondays, I can watch TV and write articles almost all night long. I take luxury baths in lavender oil and Epsom salts and read. I diffuse more lavender and lemon oils in my bedroom and binge on Netflix’s House of Cards and Dr. Phil re-runs on the OWN network. On Tuesdays, I’m a mental waste. I go to clinic and that’s pretty much it. I told Bill that we either go out to eat every Tuesday or he can cook and clean because I just can’t. I need lots of leg and foot massages with peppermint oil and, well, there you have it. I’m too tired on Tuesdays to even be cranky. My daughters know that if they need homework help, they aren’t getting it from me. Thank goodness my parents are here to pick up the slack. I don’t know what I would do without my support structure. I am so lucky and blessed.

A few days ago, I had my follow-up doctor’s appointment. After just two months of this new treatment combo, guess what? I’m back in remission! I love that word. Let me repeat it:
REMISSION!

REMISSION!

Now the BIG QUESTION: To transplant (again) or not. Studies seem to say that if I do another stem cell transplant while I’m young(er) and healthy and in full remission, I might stay in remission longer. On the flip side, as many of us myeloma warriors know, transplants are HARD. And there are so many new drugs and treatments that I haven’t used yet, and many more in the pipeline. Can I avoid the dreaded transplant for another decade or a few years or maybe forever?

I told Dr. A that I didn’t want to think about anything for two months, then we will meet, come up with a plan, and then I’ll get a few more opinions. Even if I agree to a plan, I have many months before I’m committed. If I had to decide NOW (and I don’t), I would decline the transplant and stick with meds. But in a few months, who knows if I’ll change my mind. Back when I did my first transplant, I decided to decline the second. I was already in remission, after all, and my third and fourth opinion doctors said that they wouldn’t do tandem transplants on me. And then, without warning, I changed my mind and did the second. I just made that decision on gut instinct and went with it. Who knows how it’ll happen this time around.

Until then, I’ll enjoy the remission. I’ll enjoy life. With my children almost done with school for the year, we are heading on a road trip to Seattle and Canada. That sounds lovely.

And this is advice that I am comfortable giving other myeloma survivors: LIVE!

Tales from Mormonville: Teaching our daughters that their worth is not tied to virginity

My latest via Divorced Moms. Happy Monday!

Teaching My Teen Daughters That Self-Worth Isn't Tied To Sex
by Lizzy Smith                    

June 01, 2015

Share on Tumblr

I am so grateful that my daughter isn't afraid to talk to me about sex. I've always been extremely open, honest and comfortable with the topic and, I believe, this helps. Not long ago, she told me about a classmate who is sleeping around and may be pregnant. "Will you take me to the Dollar Store so I can buy her a pregnancy test?" she asked. The sad thing is that this girl, let's call her "Molly," comes from a very religious Mormon home and going to her parents isn't an option. As we talked further, Molly also believes that if she's had sex with one boy, it no longer matters the number. Sadly, the boy who perhaps got her pregnant won't return any texts or phone calls. And at school, he walks the other way when he sees her. She thought they really liked each other. Molly is afraid and devastated with seemingly no adult to run this by. She's getting all her advice from classmates who know little more than she does, and who are spreading horrible rumors around the school about her. (I would have hoped that by the year 2015, we would be beyond this but apparently not.)

Growing up in a Mormon home myself, I remember far too well being taught by (well meaning) advisors that sex was only for marriage and that this was the second worse sin I could commit (only murder was worse). If I was to do something this horrible, I needed to hurry up and confess my sin to my male Bishop so I could be forgiven and be pure again. One such lesson taught in church involved a donut. Each of us girls were invited to stick our fingers in the donut and even spit on it. Mash it. "Go ahead girls, get in there and make that donut look horrible!" When we were done, we were asked what boy would ever want to eat a dirty donut? (As I type this story, I'm thinking of all the places I could go with this analogy and I can't help but giggle.) "No one!" of course, was the "right" answer (boys, after all, want a virgin!). And that donut is like a girl who sleeps around-- she is used up and undesirable. Worthless. Gross. When the lesson was done, we were all invited to enjoy a fresh, delicious donut. Yum!

When I graduated from high school and headed off to Brigham Young University, which is owned by the Mormon church, I can't tell you how many girls I knew who had sex with a boy and, since they were now essentially worthless, decided to sleep with anyone and everyone. After all, it didn't matter the number or circumstance since they were already doomed. Many other girls did "everything but" with an alarming number of boys. "I'm still a virgin!" some proclaimed. Others were terrified of sex and boys altogether and entered marriage (oftentimes at the ripe age of 18 or 19) totally unprepared to have a normal, healthy sexual relationship with their husband "just like that." After all, those frightening sex messages didn't all of a sudden disappear once they said "I do."

A close friend of mine, "Lori" who grew up devoutly religious, married young and without any sexual experience whatsoever, then found herself divorced after a decade, told me that she had no idea what normal sex was. "He was a severe porn addict," she says about her ex-husband. "We had strange, weird sex but I had nothing to compare it to. It wasn't until we divorced and I had sex with a man for the first time as a single woman that I realized how wrong my married sex life was. I was 42 years old before I had great sex." But the guilt that accompanied that experience was tremendous. She cried for weeks from the shame, lost weight (that part she liked), and knew for sure she would rot in hell.

I certainly don't think that sleeping around is a great option. And I would never second-guess anyone's religious convictions. But I will absolutely not teach my daughters that their value is tied to their virginity. Because their value is limitless. And having that confidence will (hopefully) help them have a lifetime of healthier attitudes towards boys, relationships, and sex in general.

When my daughter told me the story about her classmate, Molly, it was time for a Mommy-Daughter conversation.

Keep reading...

Contempt. Once this horrible emotion has entered your marriage, it's over

My latest via Divorced Moms. Kind of raw, but the whole point of my articles is honesty. And ugly, dysfunctional marriages are real. Here's your look into mine. I was hardly perfect. And there you have it.

Contempt: Your Number One Relationship Killer
by Lizzy Smith                    

May 29, 2015

Share on Tumblr

What is the number one predictor of divorce? Contempt. Irritability at your partner. Disgust. Derision. When you blow off your partner. Or even jokingly put someone down, even in jest.

John Gottman, who wrote Why Marriages Succeed or Fail after studying 2000 married couples over two decades, found that contempt, criticism, and defensiveness ultimately lead to divorce. And, further, couples who made faces (like eye rolling or sneering) when their partner was speaking were likely to be separated within four years.

This was all too true in my own marriage. Once I had developed contempt for my husband, we were on borrowed time. It happened subtly. And it took me time to realize that, wow, I wasn’t just sometimes annoyed with my husband, he disgusted me thoroughly and completely.

Rob and I married one summer and within months, his personality changed in bizarre ways. At the time, I had no idea why or how. But in hindsight, the signs were all there. Initially, he was “high” on a new relationship. He was a happy drunk (though I didn’t realize he was a drunk at all), excited, outgoing and full of energy. He was fun. When we married and shared a home (and he actually had some responsibilities attached to that, like helping to clean and walk dogs), he became a mean drunk, explosive and evil (unless we were getting ready to go on vacation, in which case he was a happy drunk again). He would scream, jump up and down, and slam his fists into tables. It was truly frightening and strange.

One day, I went to our marriage therapy session. I showed up alone because, true to form, after my husband had a big drinking binge, he stayed far away. After telling our therapist how I honestly felt about my husband—that I mostly hated him, didn’t trust him, his touch made my skin crawl, and I determined that he was uninteresting and dumb – she told me that our marriage was doomed.
“Once contempt has entered the picture, it’s basically un-fixable,” she said.

When did this all start, I wondered. I pin-pointed it back to about five months into the marriage when Rob, his mother, and I were walking from the parking lot to a Charger’s football game. I was joking around about how badly marriage sucked and why would anyone put themselves in such a miserable environment on purpose. Hahahaha. She said that she was really uncomfortable with the bantering. It struck me that she was right. I mean, who jokes about that (especially in front of your husband's mother)?

I started to increasingly realize that I was rolling my eyes when he spoke, not kissing him during make-up sex (too intimate, I’d say), and even saying awful things to him, sometimes jokingly ("You're so funny, you can't even manage a coherent thought!) and sometimes horribly bold ("How's that beer working for you? Have you looked at yourself in the mirror lately? You are a mess.). Truth was, as I thought about it deeper, I was striking back at his abusive behavior in a very passive-aggressive way. If he could scream at me, I could say incredibly mean, below-the-belt things back. I was desperate, somewhat in denial myself, and not ready yet to say out loud how I really felt: I wanted out. I wasn’t in love. I didn't even want him to touch me much of the time.

Keep reading...

MCRI Radio tomorrow: The measles vaccine in treating multiple myeloma

The measles vaccine is a very exciting treatment for myeloma. To learn more and ask questions of the doctors doing the major research at Mayo Clinic, tune in tomorrow! Here it is from The Myeloma Crowd.

Our Next MCRI Show: Expanding the power of the measles vaccine in multiple myeloma with Dr. Frits van Rhee and Dr. Stephen Russell, Friday, May 29 @ 11 am CST 

   

Friday, May 29,  9 am PST, 10 am MST, 11 am CST, Noon EST

Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer

The powerful measles vaccine made a media splash with its response in multiple myeloma patient Stacy Erholtz. Further Phase II studies are now planned to take things a step further. Dr. Frits van Rhee, MD, PhD of UAMS and Dr. Stephen Russell, MD, PhD of the Mayo Clinic will share their work to overcome barriers to enable the vaccine to work in a larger number of high-risk and relapsed/refractory multiple myeloma patients. 

Dr. van Rhee is a professor of Medicine and Director of Clinical Research with the Myeloma Institute for Research and Therapy at the University of Arkansas for Medical Sciences. He earned his MD at Erasmus University of Rotterdam in the Netherlands and his Ph.D. at the University of London. He was a Fellow in Hematology and a Research Fellow at the Hammersmith Hospital & Royal Postgraduate Medical School in London. He was also a Registrar Fellow in Hematology at John Radcliffe University Hospital at Oxford and at the University Hospital in Nottingham.

Dr. van Rhee’s research focus is on immunotherapy. He leads the Developmental Therapeutics Project in the Myeloma Institute’s PO1 grant called “Growth Control in Multiple Myeloma” from the National Cancer Institute. He’s a member of the International Society for Experimental Hematology, International Society for Cellular Therapy, and the European Group for Bone and Marrow Transplantation. He’s on the Editorial Board for Annals of Hematology, Bone Marrow Transplantation and Cytotherapy and he reviews for many journals including Blood, Clinical Cancer Research and the British Journal of Hematology and many others.

Dr. Stephen Russell is a board-certified hematologist and world leader in the field of gene and virus therapy. He graduated from Edinburgh University Medical School in England having decided as medical undergraduate that he would spend his life attempting to convert viruses into powerful anti-cancer drugs.

Dr. Russell moved from Cambridge to the Mayo Clinic in Rochester in 1998 to build and direct a new Molecular Medicine Program focused on the development and clinical testing of new, genetically-based therapeutics. He is a professor of Medicine with the distinction of a named professorship, the Richard O. Jacobson Professorship in Molecular Medicine. He serves as an associate medical director for the Department of Development at Mayo Clinic, Associate Director for Translational Research in the Cancer Center, and Deputy Director for Translation, Center for Regenerative Medicine in the Mayo Clinic as well. He was one of the founding board members of the European Society of Gene Therapy and a member of the board of the American Society of Cell and Gene Therapy. He serves on the editorial board with several scientific journals including Human Gene Therapy, Gene Therapy, Cancer Gene Therapy, the Journal of Gene Medicine, and the Journal of Molecular Medicine. He is also the co-author of more than 275 peer reviewed scientific publications.

Milkweed Balm - My answer for intense leg and feet cramps?

Every once in awhile I come across a product that I find really amazing and helpful in my life. And when I do, I like to share. Since starting my new therapy for multiple myeloma of twice weekly infusion of Carfilzomib, once weekly 50 mg of Dexamethasone, daily Revlimid, -- all this for three weeks-- followed by one week off, and once per month Aridia, I get intense cramps in my legs and feet. I've written about this prior both here and in some articles at Myeloma Crowd (www.myelomacrowd.org). I have woken up in the middle of the night whimpering in pain. The only thing that has semi-worked (until now) is waking up, walking around, massaging peppermint oil vigorously into the cramped areas, and waiting it out. It is not conducive to a restful night's sleep- that's for sure. Once the cramping is gone, I sleep with pillows under my knees, thereby creating a tent-like effect and protecting the positioning of my legs and feet.

And then I came across Milkweed Balm. It's a lotion that smells ok. Different, but worth it. The cost is $12 for the lotion and $25 for a roll-on, so it is quite affordable. The company touts the lotion as a way to ease pain, whether it be incision pain, sports injuries, chemo pain like neuropathy, eczema, inflammation and, in my case, cramping.

Milkweed Balm fights pain. Filled with Omega 7 fatty acids, anti-inflammatory agents, antioxidants, phosphorous, calcium, magnesium and zinc, Milkweed Oil helps alleviate pain topically. Just put it on where it hurts. Milkweed Oil has a cumulative effect, so the more you use it to begin with, the less pain you will need to reapply in the future.

I'll try just about anything! So I did. Within one week of using it every morning and evening on my feet and calves, I have yet to get another one of those horrible muscle cramps. Not one. From one every night on the days I get Carfilzomib to zero. It's been a month and they haven't been back. Is it because of the Milkweed Balm? I have literally done nothing else. I haven't even used my peppermint oils that helped once I got the cramps. No extra vitamins or medications-- nothing at all. So... I will say it certainly helped and may be the reason they've stopped.

The company offers a free trial sample. Why not check it out? To order, or for more information, visit http://milkweed-balm.myshopify.com or call 800-621-3696. In my world, if it doesn't hurt me, I'll try just about anything. And, of course, if you're under doctor's care, talk to him or her about it prior to starting any new alternative treatments.

12 Items To Spruce Up Your Wardrobe For Summer. My latest via Divorced Moms

My latest via Divorced Moms. Happy Tuesday!

Summer Wardrobe Refresh! 12 Items To Spruce Up Your Summer Look
by Lizzy Smith                    

May 26, 2015

Share on Tumblr

1. White Sundress
I love sundresses. They're the easiest way to get dressed in the morning: simply put on a pair of panties, perhaps a bra, sundress and a pair of cute sandals. All done. For this season, a white dress is essential. Nothing speaks pretty simplicity than white. Most every retailer has an option to suit any budget. My favorite is this one from Anthropologie, retailing at $138.

2. Pedicure
Pick a bold, bright color. Since likely you'll be wearing sandals and flip flops, having nice toes is essential.

3. A New Hair Color
Try going for a whole new color that's not "you." While you're at it, get a good trim and maybe even splurge on a scalp massage.

4. Statement Sunglasses
I love wearing funky sunglasses. Pick a pair that you like, perhaps two, and keep your eyes happy (and stylish) all summer long.

5. Flip Flops With Bling
A new pair of fun flip flops are a summer must-have. Personally, I love lots of bling on them. The great news about flip flops is that they are available for just about any price. At Ross, you can find many options under $15. Nordstrom's shoe section leaves me weak in the knees but the prices are a lot more than at Ross or Target.

6. Swimsuit
There are swimsuits perfect for laying out, and then there are those made for doing stuff. A month ago, I went to Ahtleta and purchased two pairs of board shorts and two tops-- one bikini, the other a more covered version. Both are amazing for snorkeling and doing athletic activities without worrying that you're showing your breasts or your bottoms are riding up your bum. Ahtleta's quality is fabulous and the bigger price tag is well worth it. In the photo here, I'm wearing both the shorts and top from Athleta. That day, we went snorkeling in Roatan, Honduras and not once did I need to tug, pull or readjust my swimsuit. Plus, after we were done, I simply threw on a white skirt and it was appropriate to go out to a nice restaurant for lunch afterwards. Dang I love it when swimwear is so versatile.

7. Shorts
A new pair of shorts (or three) are a summer wardrobe essential. This year, I purchased a few pair from Ann Taylor Loft that were outside my comfort zone of the typical solid colors. I purchased them during a 50% off sale so they were less than $30 per pair. Plus, I love the length-- not too short, not too long. With a nice top, they're a bit dressy.

8. Straw Bag
A cross between a purse and a beach bag, an oversized straw bag is the perfect choice for the summer. It should be big enough to fit all your essentials (like money pouch, cell phone, keys, and lip balm) plus extras, like a beach towel, book, sunscreen, sunglasses and a hat. I found some cute options at Target for under $30.

Keep reading...

MCRI Radio Show: Let's CURE myeloma! CAR T cells may just be the way to do it. Tune in Weds, May 27 11A CST

Tune in to Wednesday's Myeloma Crowd Research Initiative's show! This project could be a CURE for multiple myeloma! Let's WIN this battle. I think we are SO close. From www.myelomacrowd.org.
   

Our Next Show: The power of CAR T cells in Multiple Myeloma with Dr. Einsele and Hudecek, University of Würzburg, Wednesday, May 27 @ 11 CST

Call In by Phone to Listen Live: (347) 637-2631 or Listen Live Via Computer

CAR T cells are a hot topic in multiple myeloma as an extremely powerful and potentially curative therapy. It is a highly personalized treatment because the patient’s own T-cells are redirected to eliminate cancerous cells using a targeted protein found on the myeloma cells. Learn what Dr. Hermann Einsele, MD and Dr. Michael Hudecek, MD are doing with CAR T cells to target the CS1 protein, commonly found on myeloma cells. 

Hermann Einsele, MD, is Professor of Internal Medicine and Director of the Department of Internal Medicine at the University of  Würzburg in Germany. Following his medical training at the Universities of Tubingen, Manchester, London and Seattle, he became a research fellow in the Department of Hematology/Oncology/Rheumatology/Immunology at the University of Tubingen, Germany. He was board certified in internal medicine in 1991 and became Assistant Professor in 1992. In 1996, he was board certified in hematology/oncology. He is a Visiting Professor at the Fred-Hutchinson-Cancer-Research-Center in Seattle, USA and the City of Hope Hospital, Duarte, USA.

Professor Einsele is a member of the American Society of Hematology, the European Group for Blood and Marrow Transplantation (EBMT), and the EBMT working parties for Infectious Disease and Immunobiology. He is currently a member of the board of the German Society of Blood and Marrow Stem Cell Transplantation. In 1999, he became Chairman of the German Study Group Multiple Myeloma. In 2003, he received the van Bekkum-Award of the European Society of Blood and Marrow Transplantation. He has published > 350 articles in peer-reviewed journals. His research interests include multiple myeloma, stem cell transplantation and adoptive immunotherapy. He is a member of the board of the German Lymphoma Group. In April 2011 he was elected Honorary Fellowship of the Royal College of Pathologists (London).

Dr. Michael Hudecek, MD,  leads the CAR T cell lab work at the University ofWürzburg. Dr. Hudecek obtained his MD with summa cum laude from the University of Leipzig, Germany, and performed his post-doctoral research fellowship at the Fred Hutchinson Cancer Research Center in Seattle, WA, USA. Dr. Hudecek joined the University of Würzburg in 2012 as a clinical fellow and research group leader.