What I Learned from going through Stem Cell Transplant for Myelofibrosis

No Time Like the Present – To Kick Cancer’s Butt

by Heidi Cascarano

It wasn’t in the plans.  I had lived with the diagnosis of Polycythemia Vera, and then Myelofibrosis for 9 years.  I was told I could live several years with them and that progression was the exception.  My hope was amplified by my success with drug treatment, including Pegasys and Jakafi, and the combination of the two.  I was living my life with relative energy and few symptoms.  All my blood counts were well controlled. My fibrosis had been reversed from 2+/3+ to mild.  While my first two bone marrow biopsies had been dry taps, my last several had aspirate.  I felt like I had really turned back the clock.

beat myelofibrosis MF

A Dark Cloud Emerges

In August, 2017 I started developing sores in my mouth.  I would have several at a time and I was never without them.  They were very painful and made eating complicated, but I did get somewhat used to having them after a few months.  However, I did feel that something was wrong and I asked my hematologist at Northwestern Medicine in Chicago for a new bone marrow biopsy.  He squeezed me in at the end of year, partly to humor me, I think.  But he said it “wasn’t unreasonable” to do a new biopsy.

When he called me during the first week of January, I could tell by the shake in his voice that something was wrong.  I had two new chromosomal changes that he clearly didn’t expect to see.  The conversation is a bit of blur, but he talked about stem cell transplant and that he thought I should see a colleague of his for a second opinion.  I had always said I would not get a stem cell transplant after hearing  so many scary stories, and didn’t think I could go through it.  Plus there was the risk of not coming out on the other side!  But then I never dreamed I would progress so quickly.

When my husband, Pino, came home from work, we sat on the bed in the guest room and cried.  I hadn’t moved from the spot where I had been sitting when my doctor had called.  I had been busy researching on the computer.

My big problem was the deletion on my 7th chromosome.  It was indicative of Myelodysplastic Syndrome (MDS), and also had a high risk of developing into Acute Myeloid Leukemia (AML) in the next couple years.

My doctor’s colleague at University of Chicago was in agreement with him (for a couple thousand out-of-network cost).  I was sent to the head of the transplant department at Northwestern.  My first appointment at the transplant clinic was in March, and thus began one of the most challenging years of my life.

The Most Challenging Year

My quick decision to not wait around and see where my disease led was a continuation of my aversion to the “watch and wait” philosophy.  I have known of people who waited until it was too late for a transplant.  It was more likely to be successful while I was young (50) and generally healthy.  Others had to rush into it because of a late diagnosis or progression to AML.  If you get to that point, you have to bring the AML into remission with chemo before the transplant can be started.  And there could be other complications.  I was in good physical shape from operating a house cleaning business, so I knew I should be fit enough to recover well.  I determined that there was no time like the present to kick this cancer’s butt.

The next six months were full with work, drives to downtown Chicago, other medical issues that popped up, finding a donor, and basically getting my affairs in order.  I wound down my house cleaning business and ended it completely in June.

I was having heart irregularities that required a complete cardiac work-up (as well as an overnight stay in the hospital).  A routine mammogram led to an unexpected biopsy, which, thankfully, turned out to be benign.  I also had the deadline of a surgery I had scheduled for August.  Two months were needed to recover from that before my transplant.  Around all that, I had to fit in the required tests for transplant.  Fortunately all the cardiac and pulmonary testing was already complete because of my previous heart episode.  Taking care of any skin issues, a dental exam & cleaning, and multiple blood tests were required.  I also met with the social worker and transplant coordinator at Northwestern about the transplant details and financial assistance.

My Brother Carl…..A Lifesaver!

Six of my siblings were tested to be donors.  I was told I shouldn’t have problems finding a donor because of having a large family and being of German descent.  Each sibling had a one in four chance of being a full match.  And I had seven potential 10/10 unrelated donors.  Well, it turned out that none of my siblings were a full match.  The unrelated donors ended up either not coming forward for further testing or not being a full match.  In the end, my doctor decided it was best to go with my brother Carl, who was a 7/10 match.  I read up on haploidentical (half-matched) transplants, and hesitantly moved forward.  My doctor reassured me that it was almost as good as a full match—no problem.

One of my biggest fears stemmed from the fact that a previous Bible study leader (back in 2002) had died from complications from stem cell transplant for MDS.  What were the odds that I had the same thing?  I never even heard of MDS at the time.  My brother Carl was in the same Bible study and was good friends with him.  I thought how fitting that now Carl could save me from the same fate.  Even  though it was scary, maybe it was a good sign that Carl would be my donor.

Carl and his wife, Cora, came out in August for his final testing and stem cell donation.  It took a total of two weeks, but they made a nice summer vacation out of it.  We spent some great time together and bonded quite a bit.  It was so special knowing he was making this sacrifice to save my life.  The actual process was a few days of self-administered injections into his stomach to make his marrow release the stem cells into the peripheral blood—then one powerful injection at the end because there weren’t quite enough stem cells yet.  It caused some bone pain and gastrointestinal issues for one night.  Then he underwent a process similar to a blood donation, but longer in duration.  He was a trooper, and they got a plentiful supply of stem cells out of him, which were frozen and waiting for me.

It took me two weeks to pack.  I wanted everything germ-free to prevent infection.  I sanitized everything that could be sanitized.  All of the reading I did made me paranoid.

New and comfy items I brought for my journey:

  • new baggy V-neck shirts to accommodate my central line
  • a new suitcase
  • tons of hats to cover up my soon-to-be bald head
  • a pillow and blanket
  • my own personal supply of soft toilet paper from home to give me comfort
  • books, iPad, headphones and everything I could think of to entertain myself

I set up a CaringBridge site to keep friends and family informed.

mask for stem cell transplant myelofibrosis SCTThere was also the task of getting our house ready for recovery.  We did a thorough cleaning, including air ducts, blinds, clearing the rooms of dust traps.  I bought air cleaners for two rooms.  Sadly, we had to put two elderly cats to sleep right before I went in the hospital, which was heartbreaking.  My doctor did not require it, but it was necessary because of extenuating circumstances.  All of our many plants were moved to the basement.  My immune system would be extremely weak when I came home and I would remain vulnerable for a long time.

Even with all the activity and uncertainty, I had a real peace about the whole thing – much more peace than I would have dreamed of having.  I think I was calmer than most of the people around me.  The last weekend before going in was filled with prayers by friends and the elders at church.

A New Beginning

I entered the hospital on October 10.  There was an immediate whirlwind of activity with having my central line (vas cath) put in under mild sedation.  I was put in my new room and my first chemo was started.  Pino and I wiped the whole room down with disinfectant cloths because we didn’t quite trust that it was clean enough.  After all my reading, I was more focused on germs than the hospital staff seemed to be.  There were “rules,” but not as many as anticipated.  Once, when I was being picked up for transport, I hadn’t been given the special mask to wear while I would be roaming all over the hospital into uncontrolled areas.  Pino had to find a nurse and ask for one, and he had a word with the head nurse over that one!  That would not be his last meeting with her. He was very protective.

Vas cath is a specialized central venous catheter. It is used to put medicines, blood products, nutrients or fluids right into the blood or removing blood for testing.

stem cell transplant a cure for MPN

Infusion day

The first week was composed of six days of two types of chemo and a “day of rest.”  The purpose of the chemo was to kill all my blood cells and, therefore, the cancerous cells.  They expected my counts to really start falling a few days after the infusion of donor cells.  I was still able to eat pretty normally and was only nauseated off and on.  My worst problem was horrible pain at the site of my central line.  The seventh day is supposed to be a day of rest, but ended up being the day they removed my central line and put a PICC line in my arm.  It was one of my worst days there because the resident doing the procedure was “practicing” on me, and had to be led through it by a nurse.  I thought I would die from the pain.  It took an hour for the actual procedures.  I also had a few fevers the first week that required chest x-rays and antibiotics.

Infusion day (Day 0) was October 17.  It was an exciting day because of the significance of it, but the actual procedure is pretty uneventful.  We had the chaplain come and say a blessing over the stem cells before the nurse infused them.  What was also special was that my mom, my brother Carl, and my aunt Sandra all got together for lunch in CA and prayed for the procedure and for engraftment.  I still felt good enough at that point to eat real food and walk the halls.  I had to wear a gown, mask, and gloves outside of my room, but they encouraged the exercise.  Two more days off from chemo after the infusion, then I had another dose of a third chemo to help prevent GVHD (Graft versus Host Disease) because of the haplo transplant.  This is when the side effects of chemo really began to kick in.

Insightful chronicle, just before the Stem Cell Transplant


The next week my blood counts plummeted.  They kept a chart of my daily blood counts on the wall for me to follow along.  I had blood in my urine from the third chemo.  As my hair started coming out in massive amounts, I made the decision to shave my head.  It’s a good thing I did before I got too weak!  I was able to write some on my CaringBridge site up through six days after my transplant, but at that point my communication went dark.  Pino took over the next few updates, as I was struggling with extreme fatigue and pain.  At times, I was unable to stay awake long enough to text a short sentence or take a drink of water.

Most of my body was covered with a terrible skin rash (I believe from the Hibiclens) which I was required to shower with each day.  This would require a skin biopsy off my back.  I couldn’t eat at all and could not even swallow my own saliva for days.  I had to have a suction system to remove it.  They put me on a pain pump for the severe mouth pain.  I had a headache (from muscle tension in my neck), and they sent me for a CT scan of my head to be safe.  At my worst, I couldn’t talk because of my mouth sores and swollen throat and mouth (mucositis), which led to panic attacks.

Pino was requesting prayer from everyone we knew and the anxiety subsided.  I was throwing up and having other gastrointestinal issues.  In the shower one day, I had a non-stop nosebleed when my platelets were extremely low.  I was receiving blood or platelet transfusions most days.  However, through all of this I still took showers on my own daily and made myself get up and sit in a chair during the day.

On the morning of October 30 (Day +13), Pino’s and my anniversary, the night nurse came in with my early morning labs, and she had drawn a big happy face on the paper because my white counts started to go up.  She was very excited for me.  I was relieved, but still feeling miserable, having hallucinations at night and felt like I was in a different room, although I knew better.  I am sure it was partly from the pain medications.  However, after that I started to improve and be able to eat a little.  I mostly lived on protein drinks.  My biggest hurdle to getting discharged was being able to take all my medicine orally and hold it and my food down.  Also, I experienced some very high fevers during the previous two weeks and I had to be free of fever.

I can’t describe how badly I wanted to go home.  I missed Pino, missed our home, missed being able to walk to a fridge and get something out myself, missed my bed— I was desperate.  I cried to God at night to let me go home.  I told every nurse and doctor, I wanted to go home and that I would be able to heal better there.  Approaching Day +21, my counts were almost normal.  They had to get my Tacrolimus (an immunosuppressant) level into therapeutic range for me to leave.  I said Bible verses (2 Tim 1:7) or prayers every time I took pills or brushed my teeth so I wouldn’t throw up.

I put six different Bible verses on my phone’s calendar at different times of the day as encouragement and reminders to trust God.  When my doctor came for rounds in the morning of Day +21, he said I should be going home in a few days.  I almost fell over in grief and disbelief.  Then all the doctors started laughing and said he was pulling my leg – I could go home that day!  I wanted to hug him I was so happy.

All of a sudden there was so much to do, but I was still so weak.  I needed my once a month Pentamidine treatment (a respiratory therapy) to prevent pneumonia, I had to set up my home health care, have my huge bag of prescriptions brought to me and go over them all, pack all my accumulated stuff up, talk with various nurses and pharmacists, and anxiously wait for Pino to arrive!  This required a lot of resting between activities, but I was so excited to go home, I didn’t care how many hoops I had to jump through.  By the time we left, it was rush hour, and I was amazed I made it home without feeling sick.

They tested my blood to see the percentage of donor (male) cells I had the day I left the hospital.  Days later I learned that I had 100% engraftment at Day +21, which is pretty remarkable.  I believe that my drug therapy for the several years before the transplant, and reversing my fibrosis, was the key to that.

There were so many things about the transplant and recovery I dreaded, but I was very well prepared.  I got through the dreaded things, and some of my fears never played out as I expected.  There are things that you can’t plan for and you don’t know to expect.  I’m sure there are surprises for everyone, but you just have to take one step at a time and gather support around you ahead of time to help you get through it.

I thought that some of my favorite activities might keep my spirits up while in the hospital.  But I didn’t read the books I had, listen to music, play games, or do about anything while I was really miserable.  It was awful.  But it was only a couple weeks of my life that were miserable.  When I came home, it was similar, in that I had a hard time developing a routine.

I was very happy to get home, but not quite as much as I had imagined.  The news (which I usually love following) depressed me so much.  The fact that winter was just coming on did not help my mood. It was getting dark at 4:00 and I was stir crazy, but too exhausted to do much at first.  I was very emotional, and feeling down for the first six weeks.  Everything around the house reminded me that I was “sick.”  I had home health care visits every other day.  There were boxes of supplies seemingly everywhere.  I bought gloves, masks, and shoe covers for guests to wear in case it was wet out.  I had an IV pole and supplies for Pino to flush my lines twice a day and to give me a magnesium IV bag three times a week.

I had the PICC line in my arm that I had to wrap in plastic for my daily shower.  But this was not new – the Press ‘N’ Seal was so much better than the cling wrap I had used in the hospital.  And showering was hard as I was weak and my balance was off.  I would only shower when Pino was home for the first couple months.  Nonetheless, I was so happy to be in my own shower.

After a few days at home my back went into spasm from lying around too much, and I could hardly move.  I had a history of back issues going into this (a spinal fusion and history of fibromyalgia) so the month of relative immobility had really taken a toll.  On my first visit to the clinic the next week, I had to have chest and rib x-rays to check everything.  I had a small amount of fluid around my lungs.  They gave me some antibiotics and powerful narcotics to make things bearable, but I took very few.  They created even more problems with my gut, so I stopped them after a couple days.  Thankfully, I got that behind me and I was determined to start moving – movement is the best thing to prevent back pain.

Movement & Spirituality were Key

I sat carefully on the couch most of the day, but got up every hour to pace the floor for five minutes.  After the first week of that, I increased to ten minutes, and soon I was getting in a couple miles a day walking across my living room and kitchen.  I also laid a (sanitized) yoga mat on my (sanitized) floor and started doing stretches and core exercises.  It was pretty slow at first since I had lost 20 pounds and madseemingly all my muscle in the hospital.  I remember my first walk around the block after two weeks at home.  I thought I wouldn’t make it.  I was huffing and puffing and dying to lie down when I got home.  Three and a half weeks later, I went on a 1½-mile walk, one month later I joined a gym and started working out.

The increased activity helped my mood, but the real key was spiritual.  I started reading multiple devotionals every day to keep myself in a grateful frame of mind.  I thanked God many times a day for my progress and healing.  I kept a praise journal with a list of all my accomplishments and improvements, including activity level and foods I could tolerate.  All the spots and discolorations on my skin began to fade, my body smell and breath improved, my lips stopped peeling, my sense of taste improved, and I gradually increased the amount of housework I could do.  All these things made me start to feel “normal” again and I was so grateful for every milestone I achieved.

Isolation and fear of catching something were the hardest parts of recovery the first month.  I saw very few people and only left the house for medical appointments.  I had one good friend that came to see me frequently and texted me all the time (as she had while I was in the hospital).  She and her husband would not even go around anyone who was sick, and would say they had someone they had to stay healthy for!  That meant so much to me.  Pino, also, went around his office in the morning wiping down everyone’s phones, and other common areas.  He put hand sanitizers on everybody’s desks.  I had a few other visitors as well, and I even looked forward to my nurse coming!  Risk of infection is high after a transplant—not only because the immune system is not recovered, but also because of the high quantity of immunosuppressants you are on.  I had a special number at the transplant clinic to call 24/7 if I had a fever, vomiting, diarrhea, or any other problems.  They take it quite seriously.  Nobody was allowed to visit me if they had any hint of illness.  I had a urinary tract infection at one point, but I was so blessed that I never got anything more serious.  Many people end up hospitalized for something during their recovery— especially during flu season.

In December, my sister Lorelei came out to help me for a week, and also to be here for my birthday.  She is so naturally easy-going and nurturing, and that lifted my spirits a lot.  She is also a wonderful cook, but, unfortunately, I was having a lot of stomach issues at the time, and wasn’t really enjoying food yet because of my altered taste.  By the time of her visit, my spirits were lifting as my independence grew. I had already started driving locally, and before Christmas I was driving myself downtown Chicago.  Pino had intended to take family leave from work, but ended up only staying home with me for one week and not taking leave from work.

I had my Day +100 milestone some time in January.  At that point I was working out in the gym, making jewelry, playing the piano, grocery shopping, driving myself everywhere (in the snow!), eating most foods with some enjoyment, and I got rid of my PICC line, home health care, and magnesium IV’s.  That meant going downtown only every two weeks.  I wore a mask every time I left the house.

So far, the only GVHD related problem is in my eyes.  GVHD is caused by the donor cells attacking my tissues because they are different.  Mine are especially different because of Carl not being a full match.  In February my transplant doctor sent me to see a GVHD eye specialist at UIC.  They made special eye drops with my own blood serum.  That, along with the steroid drops, did help some, but I am still having issues with the eyes and blurry vision.  Another complication I am being treated for is result of the chemo-induced menopause and all the related symptoms.  I still have a few-year window in which GVHD can flare up, and I am on steroids and Tacrolimus to prevent that.  They are slowly tapering my medications down.  I also still take an antifungal, an antiviral, a pill to protect my liver from GVHD, and go for Pentamidine treatment once a month.  And I take even more vitamins and minerals to get my levels back to normal and help treat the osteopenia I developed from the chemo.  I must be careful because the steroids can cause even more bone thinning.

At the end of March, I went with Pino, Carl, and Cora on a 10-day road trip.  I was completely paranoid about restaurant food up to that point, but that trip gave me a lot more confidence that I could lead a somewhat normal life.  I am not saying it wasn’t a pain lugging all my medicine around, keeping it cool, keeping myself covered up with hats and sunscreen, and wearing a mask everywhere.  But you kind of get used to people staring at you.

Overall, I would say I feel amazingly well for being six months post transplant.  Besides having new blood, I have a new lookout on life and new strength I didn’t know I was capable of having.  I am grateful for Pino and all he did for me during my transplant and recovery.  I am also grateful for my closest friends and family that were there for me, though the hard work of recovery I really had to do on my own, with God, because it was mental and spiritual.

My greatest lessons from the Stem Cell Transplant experience are:

  • Keeping an open mind about treatment—you don’t know how you will react until you are really facing possible death in the near future.
  • Be proactive with your own education and treatment—sticking your head in the sand will not make the cancer go away.  Get yourself to the best possible doctors you can find.
  • Slowing down the disease with drug therapy is great, and may make transplant more successful, but it doesn’t prevent new mutations and ultimate progression.
  • Keep yourself in as good of shape as humanly possible, even if you don’t feel like it; do everything you CAN do.
  • Don’t make decisions out of fear.  I really thought that I could not handle chemo and a transplant, mostly because of my aversion to throwing up and feeling sick.  I survived.
  • Follow doctors’ orders to a T, but speak up for yourself if you want to try something different.  I tend to be a little pushy with my treatment, but you can bet I take all my medicine and take precautions religiously.  I am actually stricter than my transplant doctor!
  • Enjoy the present, whatever it entails.  You never know how much time you or a loved one has left.  Don’t focus on the past or worry about the future.  The present is really all you have.
  • Most importantly, I could not have done this without God.  I am way too weak on my own.  I put my trust in God at the beginning of this journey and I know He is the reason I have come this far.  I don’t know how the rest of my recovery will play put, but I am counting on God to carry me through it.  I am closer to Him now than I was a year ago, and for that I am grateful—and even for the cancer.

Publisher’s Note:

I am very pleased that Heidi decided to share her inspiring story of strength and courage with PV Reporter and even happier she has done So well.  We published her first story back in 2015 and worked together on a couple of projects over the last several years.  I believe patients who are considering or facing a SCT will discover numerous tips and questions to ask their own doctor in this article.  Remember to keep a positive mental outlook and don’t ponder on the negative aspects of living with MPN (I know this is easier said than done).  Way to go Heidi, you are a true warrior and we are so proud of you!!


 

About David Wallace

Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward - "educating the patient is essential, so the patient can guide their physician to meet his or her needs." PV Reporter is a comprehensive resource hub giving visitors vital tools to become "empowered patients."

 
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