A Personal Story of Surviving My Third Stem Cell Transplant

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BY LIZZY SMITH

I have completed my stem cell transplant and lived to tell the tale. This was my third– in 2012 I had tandem auto stem cell transplants within a five month period. I sailed through those. While I didn’t feel great, and I hated the hair loss, I never developed complications or fevers. I ate everything I could find and my energy level was quite decent.

This transplant was far different. Between November 2 and December 25, I was admitted to the hospital three times: the first for five days to get D-pace; the second for 15 days because I got pneumonia; and the third for five days because I got a severe case of mucositis (gross!) to the extent that I could swallow no food, could barely sip water or lemonade, and could get no pills down. For those five days, no exaggeration, I did not eat a morsel of food. It was fine because I had no appetite anyway and, honestly, the menu at Huntsman Cancer Hospital for the neutropenic patient is disturbingly bad. I wouldn’t want to eat that poison anyway– highly processed, overly salted, chemical stuff they call food (I don’t). I spent my birthday, Thanksgiving, Christmas Eve, and most of Christmas day in the hospital.

The good news is that I engrafted right on schedule; the bad news, my engraftment was awful. I suppose one could say that I landed with a big huge THUD. (When I did my tandems in 2012 and engrafted, on my way home, I stopped at the spa and got a facial, followed by shopping at Costco. Big difference this time.)

Here’s my mini diary…

I received high dose melphalin on a Tuesday. I should not have felt its effects for several days but I felt it the day-of. I knew then that this was going to be a bad experience. My poor body was just done with this intense treatment and was fighting it every step of the way. “LEAVE ME ALONE,” it seemed to be screaming. And I (and my doctors) were not heeding that warning. On the day of my treatment, I chomped on ice for an hour and then went home, tired and feeling very “wrong” and twitchy. I went to bed early after taking two Ambien and an Ativan (yikes) to calm me down.

Just days later I was feeling (too) awful– fatigued and developing chest pains. It’s like I had acid reflux but could not get any of it out. I knew mucositis was setting in– a painful inflammation and ulceration of the mucous membranes lining the digestive tract.

By the following Monday night, I was in terrible pain. I was barely able to swallow, my mouth was coated in mucus, and I felt like someone was stabbing me in the chest. I could not swallow my pills. Off to clinic I went and soon enough, I was readmitted into the hospital. I wanted to SCREAM. I was severely dehydrated and thirsty. The pain in my chest made me cry. Because I couldn’t swallow any of my mandatory pills, I was given them via IV. I was hooked to a morphine pump (which took 7 attempts to get the needle in), and I was given IV fluids. Because I wasn’t eating, my weight plummeted. My doctors begged me to eat. Sorry, impossible, I said.

Finally on Christmas day, I begged (and won) my exit from the hospital. I went home throwing up in a bag and crawled into bed and fell asleep. Merry Christmas to me!

I really thought that as soon as I engrafted, I’d be on Healing Road. WRONG. For a solid two weeks, I was weak and got tired easily. I developed terrible and uncontrollable diarrhea that lasted four miserable days. I threw up at least once per day. I was doing my best but barely eating 500 calories per day (I suppose it was better than zero). I got too thin. I did not want to get on a scale because I hated watching my weight plummet. I’d look in the mirror and want to scream at myself  “EAT A PIZZA”. Instead, I nibbled on sourdough bread.

Labs showed that I was potassium deficient. I was given a bottle of potassium and told to take 16 per day (no joke) in addition to all the other medications on my list. I was trying to swallow 28 pills per day total. Each one hurt going down. It was horrible. I called my doctor’s office and put my foot down: no more. The pills were making me sick to my stomach, especially the potassium. They agreed to give it to me via IV over four hours. Within a day of stopping the potassium pills, I was not throwing up daily. I started eating real food. I vowed to go nutrient-dense and healthy: fresh wild fish cooked in EVO, grilled garlic and veggies, huge salads, loads of tomatoes and avocados, quinoa, black beans, and homemade soups. I started feeling better and gained four pounds.

It’s now been about 40 days post transplant and for the past couple of weeks, I’ve been feeling terrific. My energy level is almost back to normal. I’ve taken my daughters skiing twice (I did not go with them but stayed at the resort all day, shopping, reading and treating myself to lunch). I’ve hosted two pretty large dinner parties at my house. I clean and cook. I go shopping. And I am healing, both physically and emotionally. One thing we do not talk enough about is the terrible emotional toll treatment has on us. I left the hospital fearful and had frequent nightmares. They’re pretty much gone now.

The theme here is that transplants are hard! But they do eventually end and we do heal. It takes longer for others, but it does happen. This Myeloma Journey is not easy. For me, it is one step at a time, one day at a time. And in between all the terrible treatments and side effects, I live life to its fullest. I just booked two trips– one to Florida next month and another to Costa Rica in early April. I deserve some warmth and fun.

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About Author

Lizzy

Lizzy Smith was diagnosed with myeloma in 2012 at age 44. Within days, she left her job, ended her marriage, moved, and entered treatment. "To the extent I'm able, I want to prove that despite life's biggest challenges, it is possible to survive and come out stronger than ever," she says.

8 Comments

  1. God bless you Lizzy I’m just starting
    Found my myeloma in October of 2014 been with oral treatment I went to moffitt cancer this January for prep for stim cell transplant. Getting ready to go back for three days of testing. Not sure my lungs are good enough to Handel it all. I guess I’ll have to let the Drs do tests and tell me. It really helps to read story’s like yours as I have no idea what it’s gonna be like. I’m scared I’m also a caregiver to my bed ridden mom I want to continue to care for her as long as she lives. She’s 98 lol I’m doing pretty good with the treatment I’m on hate to rock the boat. Thanks for telling it helps

    • Lizzy

      Pat, My prayers are with you! If you proceed with SCT, remember, not everyone has it tough. My first two were a breeze. This one, not so much. But you WILL get better. We can do anything for several weeks, right? Make sure you plan something great for when you feel better. It will give you something to look forward to. It can be as simple as hiking a trail or going skydiving (that’s what I did the day before I checked into the hospital for Dpace), or planning a trip, or going out to your favorite restaurant and ordering two entrees. Keep in touch and best of luck.

      Lizzy

  2. All I hear are horror stories about transplants. I’m a year and a half into this still doing the Velcade/ Cytox treatment, with light chains in the teens so I’m putting it off as I don’t see the upside. I do not want to do the sct until I have to. One, I can’t afford to lose my job, as a single person, I’m it. When I see the word vacation, it’s been so long, I have to look it up. That will never happen. The biggest mistake for me is letting anyone know about it. I was surprised how people distance themselves from you like it’s catching or something. All you can do is go on. Try to live twice as much everyday. Hopefully all this talk of new treatments will trickle down to us.

    • Lizzy

      Ken,

      SCTs are hard but they DO end! Remember that. It’s about 6 weeks of un-fun but it saves our lives. I, however, will not do another, at least I don’t think so. If you do need to leave work, you should be eligible for disability, state and through your job and social security. You are taxed differently and once you get on social security, after (I think) 6 months you are on medicare, which is actually decent. I left my job the day I was diagnosed in January 2012 and have not gone back. Myeloma is a journey and expect curves and bumps, but in between, there’s a lot of living to be done. I believe in living as big and grand as I possibly can. Best of luck and God bless.

      Lizzy

  3. Madeline Michelle on

    Lizzy: I had my tandem SCT Nov. 2014 and Feb. 2015 at Hackensack in NJ. Neither was easy but I do believe they give me the best chance of a long term survival. Because of the pre-treatment with Revelimid, Velcade and Dexamethasone, I’m left with serious neuropathy in my hands and feet and my energy level is not what it was, and possibly for an unrelated reason, I now have occasional vertigo. However, I am able to shop, cook, make jewelry and this spring, hope to garden. I’ve worked since I was 14 and now at 61, I’m happy to be a housewife and retired. I was surprised to hear that you had your third SCT less than 5 years after your tandem. My oncologist would’ve called that a “failed” tandem, and would’ve used one of the newer drugs. Of course this is not an exact science and all doctors have their way of doing things. I’m wondering if you’ve heard of the new research with treated T-cells that causes the T-cells to recognize and destroy the cancer cells. Very new, very exciting! Thank you for posting your story. I pray for your long and healthy life.

    • Lizzy

      Because I got over two years of remission (I actually got 3), my doctors were pleased and felt that, given this response, I would have a likely good response with a third. I have heard of the new meds and also Car T Cell therapy trials. I cannot get into any of them now because I have no active disease. Should I relapse, I’m already in touch with NIH and will quickly try to get into one of those trials (that one or U-Penns). When I’m in the midst of treatment, It’s not fun but I’ve had an amazing life since diagnosis in January 2012. It’s been pretty crazy– I left my then-husband and divorced him while doing my tandems, remarried my awesome husband after dating him for 3 years, have been to Europe twice, three cruises, South America, and may fun trips in the USA. I’ve been hang gliding, sky diving, skiing, and hiking. Each day, one step at a time, living with purpose. I pray for your long and healthy life, too. Thanks for the comment!

  4. Hi Lizzy,

    I am so happy to hear about your good results and being able to have a third stem cell transplant.

    My father had his first MM stem cell transplant in 2013 and is going to have another this year, (2017). Where did you have a third stem cell transplant? I know it is not typical to do a third and I know many doctors will not do it. My father responded very well to the first. We would love it if they could to a harvest for a 3rd stem cell transplant just in case but I”m not sure his current doctors will allow it just because it has not been fully adopted as a standard procedure. Your story gives me some hope.

    Thank you and wishing you strong health for many years.

    • Jenny A

      Karen, I’m sorry to tell you that Liz passed away about three months ago. If the first two didn’t work well, the third is not likely to either. If he is considering a third, I highly suggest joining a clinical trial that can provide a stem cell transplant PLUS something else. I even suggest this for your dad for his second. There are many choices for these types of trials like transplant plus vaccines, etc.

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