Cancer, Multiple Myeloma, Multiple Myeloma in your 30s, Post Stem Cell Transplant

What a Difference a Day (or 100) Makes

My 100 day post-transplant appointment at Emory was last month. So much happened to me physically in those 100 days, but looking back it doesn’t seem like it has been that long since my 17 day vacation at Hotel Emory. For the most expensive vacation I’m ever likely to take, I really think the food could have been better. I realize it was all inclusive and you just can’t hold the food to a high standard, but it was really awful in these particular accommodations. At least my room had the best view on the floor.

Since I last wrote, I made it through my first several rounds of maintenance therapy. The people around me only narrowly survived my first two rounds, however. I was receiving two shots of Velcade per week, was on more than twice the dose of Revlimid I took in the spring, and I was taking twice as many steroids. Conclusions from those two cycles of chemo: steroids are the devil and ‘roid rage is real. Steroids make me feel like I’m floating outside of my body, watching someone I have no control over. I knew I was acting completely crazy but there was absolutely nothing I could do to change it. Also, I couldn’t stop eating so I gained about 15lbs over that six week period. Yay. Thankfully, I am now down to only one shot of Velcade a week and I am off the ‘roids and the Revlimid.

My appointment at Emory went well. I received a straight answer from the doctor regarding how long I’ll have to continue maintenance therapy. The Nurse Practitioner just told me last time I was there that I’d be on maintenance until I can’t tolerate it any longer. I told the doctor I needed a real answer to my question and he told me I’d continue with maintenance for three years.

I have to say this wasn’t exactly what I wanted to hear, but it is what I have to do, so I’m trying not to dwell on it. The stressful part is not that I have to go to the doctor every week for three years. The stressful part is the fact that Velcade is a tier six drug. That’s the highest tier, which means it’s the most expensive. Proving to be consistent at every aspect of life, I not only have expensive taste in shoes, cars and food, but I have expensive taste in cancer as well.

The doctor told me a generic for Velcade should be available in a little over a year. John did some research on this, and apparently a generic has been available in the EU since 2004. Really? REALLY?! Apparently Myeloma is a $6 billion industry for drug companies. That’s a lot of money for a cancer that affects less than 1% of the population. I’ll just roll my eyes and move on because getting off on that tangent will turn this blog into a novel. I realize they need to cover cost of research, but good lord.

The doctor also said that they are coming out with a Velcade pill soon. It is currently in clinical trials and they are seeing good results with it. Hopefully they will approve the pill for maintenance therapy and I will be able to take it, should I continue on Velcade. This could save me several trips to the doctor per chemo cycle, and it would give my stomach a reprieve from these really painful shots. I’m not just being a baby, either. My stomach is torn up from these shots (I bruise as a result a lot of the time), and it hurts to wear anything on my bottom half that doesn’t have some sort of stretchy waist (this just gives me even more of an excuse to wear leggings and yoga pants constantly). But things could be so much worse. I see people every week while I’m waiting for my shot who are in much worse shape than I am, so I am grateful that I am as well as I am.

Some of my recent labs have come back slightly abnormal, though. Yesterday I went to the doctor and I have an M Spike of .1, which is a spike of monoclonal protein (these are malignant cells that we want to get rid of). The level isn’t high; as a comparison, my M Spike was .6 when I was diagnosed. However, we really want the level to be zero, so my doctor in Columbia wants me to go back to Emory this month to see if my doctor there wants to change my maintenance therapy. We may switch drugs completely or just add something to what I’m currently taking. We shall see. I’m just thankful I’m monitored closely so we can catch these things and handle them before they spiral out of control. So, back to Emory I go on the 22nd. At least I’ll get to hit up General Muir while I’m there!

One final thought…I’ve been reflecting a lot on this past year lately, and it becomes more evident every day how lucky I am to have such a supportive husband. I knew I was lucky before all of this happened, but the way I appreciate things now is so much different. I can’t imagine what life would have been like over the past year had I not been with someone as amazing as he is. I would have been dealing with cancer and a divorce. He has seen me at my absolute lowest, most unattractive points, and he still finds me beautiful through it all. He also knows how to make me laugh exactly when it’s needed to help me get through a heavy moment. John is one of the most incredible people I know and I owe a lot of my badassery (yes, that’s a made up word) to his support.

Cancer, Multiple Myeloma, Multiple Myeloma in your 30s, Post Stem Cell Transplant

Things Are What You Make of Them

I had my 60 day post transplant follow up appointment at Emory at the end of July. While there, I underwent my third bone marrow biopsy and had countless vials of blood drawn so they could tell me how I responded to the stem cell transplant I received this past May. It takes two weeks to process the results, so after two weeks of terrible sleep, John and I went back to get the results (bring on the anxiety dreams – I still have that dream I show up for class at the end of the semester after never having gone to the class and it’s the day of the final exam, even though I’ve been out of college 10 years and final exams have nothing to do with what I’m anxious about).

All of the test results came back negative (which is a good thing). No chromosomal abnormalities or indications of Myeloma anywhere! There was still a small trace of bad protein in my blood, but we were told this is just residual and will eliminate completely over time.

The nurse practitioner talked to us about the results prior to the doctor coming in. I knew I had stage 3, high risk Multiple Myeloma going into the transplant. I knew I had chromosomal abnormalities that indicated my high risk categorization and I know what translocation means, but I’ll honestly say whenever a doctor gets too scientific my eyes glaze over and I stop paying attention. The only sciences I excelled at in school were those of the social variety. Anyway, the NP  told me to picture a chromosome (I at least remember from high school biology what a chromosome looks like). He said my abnormality was that one of the arms of chromosome 4 had swapped with one of the arms of chromosome 14. Thanks for bringing it down to a Sesame Street level for me! Now I get what t(4;14) means on my initial biopsy report, beyond it meaning I had a more unfavorable diagnosis than many others.

He later explained what my maintenance therapy would consist of. I will have two cycles of Revlimid, Velcade and Dexamethasone (a steroid), or what my doctor calls RVD. I had two cycles of this concoction prior to my transplant, after the second change to my chemo regimen. I had very favorable results once I was put on this combination of drugs. The cycles will be two weeks on and one week off. Following those two cycles, I will cut back to Velcade only, three weeks on and one week off, until my body (or my wallet – whichever gives out first) can’t tolerate it any longer. So I basically have no idea how long that will be.

Revlimid, or lenalidomide, is a derivative of thalidomide and has some serious possible side effects. Not that most chemo drugs don’t, but it is a pill I have to order from a specialty pharmacy that I really hate even having in my house, so I’m glad my maintenance will only consist of two cycles of it. I don’t really dig on the stress of having chemo drugs in my medicine cabinet, plus the process of getting a refill is completely annoying (pregnancy test, internet survey and over the phone counseling each time), so not having to go through that every month until I’m 70 is a relief (yes, they make every female under 70 take a pregnancy test – wtf?). They don’t want me having any babies with fingers for arms, although I’d be shocked if I was actually fertile anymore after the dose of Melphalan they gave me before my transplant.

They give Velcade to me in shot form in my stomach. I remember it as one of the more painful shots I’ve had to endure, but I started the shots again today and it was not nearly as painful as I remember. I can either attribute it to feeling better in general, or I can attribute it to developing a higher tolerance for pain and general bullshit through the transplant experience. Either way, I’d rather get a shot than have to sit there for four hours while chemo slowly drips into me via infusion. Velcade is proven to be the most effective drug at fighting my particular chromosomal abnormality, which is why they have selected it for my maintenance.

The entire purpose of maintenance is to keep me in remission longer. With MM, you are not in the clear if you stay in remission five or even ten years. It has been described to me as being more like a chronic disease because it can come back at any time.

It’s hard to know what to expect because doctors tell me not to pay attention to research statistics as I don’t fall into the “normal” range of people who have this disease. There isn’t any clinical research published (that I can find) regarding the survival rate of women in their 30’s in remission who were diagnosed with high risk MM. I’ve read about the chance of relapse with a t(4;14) abnormality, and even with a complete response the research states it’s almost inevitable. But again, I’m not supposed to pay attention to any of that because most people diagnosed with MM are over 65. I need to stay off the internet. Google is not my friend.

My oncologist at Emory tells me he’s following a treatment path to ensure I live the life I want to live, which for me would involve meeting grandchildren, so he best get me another 40 years (keeping my fingers crossed John and I do a good job parenting and I don’t meet my first grandchild in like 15 years). If that’s what I want, that’s what he’s striving for, although I suppose I have to do a little work along the way, too. I’m going to lean towards trusting Dr. Lonial since he’s the one who is world renowned for his work with MM. He’s smart enough that I’d blindly follow whatever he tells me. I know I’m in excellent hands with him and I also have an amazing oncologist in Columbia.

If I want to live a life filled with anxiety, I can sit here and worry about my future. I’m making a choice not to do that, or to at least make every effort not to do it. As a planner by nature (and by trade since I work in project management), I typically find it hard not to think about my future. When I don’t have a plan it drives me crazy. Just ask my husband, because this trait of mine drives him crazy (he loves me so much, bless him). I tell him with gusto, “I just like to be prepared!” But with something like this there is no way to prepare yourself. Sure, you can stash away savings, you know…in case shit. But there’s no way to mentally prepare yourself for the shit actually happening.

First, I have to admit that I’m a control freak (check!). Next, I have to come to terms with the fact that I cannot control every aspect of my life all of the time (working on it!). I’ll do my best to live day-by-day and not to live for the future. I’ll immerse myself in exercise to alleviate anxiety. I’ll get my ass outside beyond the pool in my back yard as soon as it’s not 800 degrees with 500% humidity (exercising outside in a hat or head wrap right now isn’t ideal for me – bring on fall weather!). I’ll enjoy my family and friends. That’s my plan. It seems simple enough when I write it.

I am slowly getting back to doing normal things now that my blood work indicates I can do so. Being trapped in the house over the summer was a little harder for me than it was this past winter. Recently I’ve run some errands and gone out to eat a few times, which for most people is just normal, but for me it’s been a treat. John and I actually left the house to go to the lake and socialize with friends a couple weeks ago for the first time since May. Before that it was December, so you could say I’ve been a bit deprived of quasi-public social interaction; it’s an extremely exciting ordeal for me. I didn’t realize how much it helped me mentally until afterward, but I really needed some human interaction outside of my house.

Labor Day weekend we have plans to take Olivia to the beach and I’m beyond excited about that. A trip out of town that doesn’t involve a doctor’s appointment (it’s hard for me to imagine right now)! Fingers crossed for sunny weather because John and I have terrible luck when it comes to beach trips and weather. We’ll make the most of it regardless, and at least I’ll be able to say I’ve been to the lake and the beach this summer. It hasn’t been a total loss.

Next week, if all goes well with the start of my maintenance therapy, my life will become even more normal with my return to the office. I’ve been working from home ever since my diagnosis, so I’m excited to get this part of my life back to normal. I just want to get into my first round of maintenance chemo and see how I react before I go back. Maintenance started today and hopefully I won’t have any major issues. I’m so excited to get back and see the people from work who have been so supportive through this whole ordeal. I’m truly lucky to work with so many amazing people.

On a final note, my hair is starting to grow back. It looks to be the same color as it was previously, and from close inspection in the mirror, I’m pretty sure I have grays where they were before (joy!). Gee, cancer, you couldn’t have done me a solid and gotten rid of my grays? What are you good for (other than helping me lose the rest of that baby weight)? You can still see a lot of my scalp, so for now I’m sticking with the hats and head wraps when I leave the house. I’ll admit that I don’t look that bad bald (I’ve received several comments regarding my nicely shaped head and pretty face), so having to stick with shorter hair for a little while isn’t pissing me off as much as it did at first. Plus it takes a lot less time to shower and get ready when you don’t have to wash and style mounds of thick hair. 🙂