My story…

Diagnosed Atypical CML age 40; female; US

For a few years I had some “odd” symptoms leading up to 14 months ago when I felt more strange and curious than ever.

Symptoms had included:

Night sweats (had been chalked up to the hysterectomy I had just after turning 39 in 2021)

Bruising all over limbs (off and on for 6 years or so)

Itching after showering

Extreme dry eye (I never wore contacts or had vision issues of any kind)

Fatigue (would go away and return in cycles but I shouldn’t have been aggrevated so easily when climbing stairs, etc. as I wasn’t extremely out of shape… but I also worked tirelessly as a teacher and summer camp director plus working late care totaling well over 40 hrs per week)

Hair loss (couple of years of thinning hair line started to be super noticeable to me)

Quick fluctuating weight gain then loss (everyone thought I was losing quickly w diet after a big break up with my ex of 15 years)

I went to my yearly physical in 10/22 for school with my PCP whom I adore… my wbc numbers didn’t quite look right and she thought I may be bleeding internally somehow when she compared my numbers from 11 mos prior. I had always been a little anemic*

I knew I wasn’t bleeding internally but I also attempted to get in at a couple of GI docs she suggested. It was going to take longer than I’d like… I had researched different combinations of my symptoms and truly felt I was a candidate for CML. So, I called the self referral line at MD Anderson in Houston and they got me in to see a Leukemia specialist a week or so later.

The initial appointment was pretty extensive. 29 vials of blood sent to their labs and quick results showing that I had extreme inflammation markers in my body hiding just how anemic I was. Apparently these weren’t your average blood tests and it was supposedly good that I had come to MDA because this would have been hard to catch but other types of specialists. They cancelled the bone marrow biopsy that was scheduled for that same day after seeing my bloodwork, age, overall health and obvious worry. I was told I was an unlikely candidate for leukemia and that the hope was that if I could get my extreme inflammation down and my super low iron up then I would feel a heck of a lot better. There would be a bit further testing and the results would come within a couple weeks but they’d be in touch to either schedule me or refer me for my issues. In the meantime the Christmas holidays were coming and I was to start on a good diet and an iron supplement.

Fast forward to the evening of 12/30 when I was about to board a flight from Tampa to Houston after visiting friends and family for the holidays…

I received an e-mail that stated I had new results in my MyChart from MDA. So, I opened it and tried to decipher what I was seeing. It was a gene mutation result. Something I didn’t even know to expect. There was a lot of information, letters, numbers, and more. I knew it being the new year I wouldn’t be able to speak to anyone for a few days at least and I was a little leary. I sent a message to a friend that ran a dna lab at OU in Oklahoma City and asked if she could tell me what any of it meant.

She returned my message with a few questions as to why I even had the testing done and said she would lay it out for me in a day or two via email as best she could.

When I received her response, I had of course already been researching each mutation like crazy, but she was able to explain each mutation in scientific and in real talk. You see I had a total of 11 mutations occurring on 7 genes. She was able to breakdown most of them in her own and had to do a little research on a couple. She said I wasn’t born with a single one of the mutations, suggested I ask my doctors a few different questions, and asked to keep her informed after I spoke with them.

Once able to speak with my “leukemia” doctor… he actually apologized and stated that he believed I was right about having leukemia but he needed to get with a team and try and sort out what type of leukemia I might have. He stated that he was shocked at my gene mutation results combined with my lab work because it was certainly not typical of a 40 yr old female. He said it was more on point with what he would usually see in an elderly male. So, just in case, we would be scheduling that bone marrow biopsy after all.

The bone marrow biopsy showed the exact same mutations and at that point we knew there weren’t any mistakes but we still didn’t have an exact diagnosis.

After several weeks, my doctor and his team had several discussions and meetings about my case and finally said that it was Atypical CML. I was given a few different options as far as original chemo attempts would go including clinical trials, etc. In the end, I chose what I felt would be best for myself and my doctor agreed. We now needed to see what would happen with my blast count after chemo. I was told that in Feb 23 my blast count t was “low” at only 5%.

I started on outpatient chemo 2/20 for five days. I also stopped teaching in my classroom 2/22. I would use my medical leave and then start short term disability… which was all new to me. I was I. A whirlwind but I missed my students. Unfortunately, you cannot predict what chemo will do and how quickly you will be affected. The chemo I was on was via IV each round. The rounds were 3-4 weeks apart and after a couple of five day rounds, my medical team switched me to 3 day rounds because of my results they were seeing.

I was told that they believed my age and overall health showed I should have a stem cell transplant for the best chance of outcome once this chemo had kicked my blast count down. So the hunt for a match began with the stem cell team at MDA and I worked with my wonderful stem cell social worker to understand a lot more about the process. I also wasn’t working so I did a lot of research about my cancer, transplants, etc.

Unfortunately, I had a PICC line put in right as the results would come in that the chemo hadn’t lowered my blast count and put me towards remission. My blast count had risen even with chemo to 9% which was also fairly rapid as I understood. I was told that I stead of heading inpatient for my transplant I would be heading inpatient for an intensive week of multiple chemotherapy routes and I’d be watched around the clock to see if they could zap the blast count a bit to get me closer to remission to go back in for transplant as intended.

At this point my donor had been found. A 36 yr old male in the US with my same blood type… that’s all I knew. And instead of receiving the cells immediately, they would be preserved at MDA and kept until ready for transplant.

The week in the hospital was awful. It was just yuck. I had an IV chemo, stomach injection chemo, and pill chemo and I started to feel just gross inside. I was sent home and finished chemo myself with a chemo pump put in my PICC line, injections I did myself, and chemo pills. My body rejected the PICC line and I had to have it removed after already having it “redone” at the end of my hospital stay. My body just hated the foreign object apparently.

I then had a CVC line put in instead and would be using that during transplant instead which isn’t near as common for stem cell patients. I got really sick and developed a fever and was sent to the ER with a 0 platelet count and admitted before I could even finish out the courses of chemo. All chemo was stopped. Then after another bone marrow biopsy a week later… ta da!!! My blast count had gone up, again! This time even more rapid and to 16%. No chemo was working. Nothing was working. My leukemia was on a rampage. The leukemia and stem cell teams felt that my best option would to be to head directly to stem cell for transplant because I was “young” and “in good shape” otherwise. I surely wasn’t feeling “in good shape” but I could see and tell that I didn’t really have options. I had done the research. I knew my odds. I knew how rare of a case I already was.

I went at the beginning of August to stay on the 18th floor at MDA to prepare for transplant. I knew I would be there a minimum of a month and I wasn’t allowed to leave the floor. It would be a long time for this girl without fresh air to breathe in.

8/15/23 I had my transplant. I dont currently feel like going into it. It wasn’t anything too crazy but I did have an allergic cardiac reaction to the preservatives my cells had been stored in. That was not fun. My hair had already begun to fall out from all the intense chemo and the chemo I was put on for transplant so I had it shaved off.

I really got to know my nurses and the rounding doctors and I paid close attention to every little thing because I didn’t have family or a full time caregiver at the hospital. I am an only child and had been single again for a couple years after a bad break up in 3/2020 so I just rolled with the ugly punches. But, it really allowed me to understand my medical care and my medical teams all knew I would be asking a lot of questions.

I wound up with some delirium from some of the meds and one of the worst cases of mucusitis that one can develop. I won’t lie, it was painful and I felt miserable. I couldn’t swallow my own saliva for many days and constantly felt the need to clear my throat as my esophagus was renewing from top to bottom. I developed painful hemorrhoids and never went to the bathroom “regularly” for the next few months. But, I made myself get up and take long showers every day. I took walks around the unit daily. I visited my friend and her husband on the same floor and we would go to the family room (where we met) and do puzzles and chat about how cancer sucks, etc. We felt like sisters from different misters and they were the exact same age as me. She was about 12 days ahead of me in regards to transplant. Some of my hardest days were after she was discharged and I didn’t get to see them or their family daily.

I was put on a pain pump and all my meds went through IV because I could not swallow even the smallest pill. So obviously I wasn’t eating. I drank what I could. I smiled through the pain and aggravation. I spoke up to the rounding doctors about any little things… no matter what. My CVC line even reversed itself and went up my neck TWICE during my stay and had to be redone. If it could be “weird” with my case… the doctors and nurses all knew that it just would be. They learned not to be surprised. They laughed when I wouldn’t sleep after three doses of Benadryl… but I had already told them I wouldn’t

It was coming up on a month and I was determined that if I could go home I would heal better and faster. I had one of my nurses call the doctor on duty and tell them I wanted off the pain pump and off as many IVs as I could get off of… that I would swallow what was needed and I wanted off anything “extra”. After determining that I was serious and narrowing down each med with me, I was taken off all my IVs. I said that I wanted to go home within 3 days. They told me maybe 5-6… and then… 3 days later, I rolled on out!

Going home was not easy. At first you are outpatient daily for potassium, magnesium, platelets, injections… whatever you might need. Then, it tapered down to 2-3 days per week and viola, earlier than expected, I was told I wouldn’t be attending the outpatient center as I had “graduated” and would now attend “clinic” instead. I went twice a week for two weeks and then it became once a week where I met with my stem cell team in clinic. Of course there were blood labs every week, but my numbers were looking really good and my tacro meds would be varied buy I was doing really well. My medical teams were fairly astonished.

I have done about 200 labs, tests, x rays, etc in the last 13 months. It’s not easy. At least not as easy as typing it all out sounds. Your mind also goes to all sorts of places with any little throat trickle, sniffle, or unknown pain.

Now, I have labs every couple weeks and I have telemed calls with stem cell. I have appointments with “survivorship” every so often and they monitor me for gvhd. I worry about little things that are “different” now but usually my worries are put to rest. I was officially in remission when I graduated from outpatient visits only 4 weeks or so after my transplant. I “look” great as everyone tells me. But I’ll be honest I don’t always feel “great”.

Mornings are very difficult for me still. I have fatigue and want to sleep like a newborn as they say. I have very achy joints in my shoulders, neck, hands, and feet… worse than before transplant. My hair is slowly growing back in. It’s not the same texture and so far it’s mainly all gray which is a bit crazy. I don’t mind it much really. I still have extreme dry eye which I believe is actually worse. I’m having an issue with my neck pain giving me headaches and a shoulder pain that makes it difficult to lift even my purse from most angles on my right arm. But all in all, that’s not much to complain about when you’re alive.

This week I have a bone density test, a pulmonary function test, labs, meetings with both stem cell and leukemia teams, and another bone marrow biopsy all on Thursday. I will know if I’m still in remission and a lot of other information when we receive the results. It’s a lot to think about. I’m trying to be positive because I would like to receive my first round of newborn vaccines by the 14th (6 months post transplant).

But, that’s my story… my story in fast forward.

I had originally blogged and posted multiple times per week since it all started but my Facebook account of 20 years was h@cked into in Dec and I lost it all. It was fairly devastating. Other than that, the hardest part for me has been the paperwork and financials. I was turned down multiple times for social security. I am not a senior not a child so a lot of grants and such I just don’t qualify for, etc. It’s been mentally trying and I’ve now run out of donations and savings since I originally believed I’d be back working full time before now. But, I won’t complain. I’m here. And I’ve seen with my own eyes people that had transplants around the same time as me that are in really unwell shape (including my dear friend) and even some that the transplant failed.

It doesn’t mean my leukemia can’t come back… but at this point I’m doing very well in comparison and the medical teams have been very impressed. They’ve called me a unicorn and a model patient all in one. I had a less than 50% chance of making it out fairly unscathed like I have. Thats after being diagnosed as basically 1 in about a million for my age, sex, etc with my rare diagnosis.

For now, I keep going… Thursday will be a big day… the results will be huge. I ask for your prayers and continued supportive thoughts. I really cannot wait to work again as soon as possible in whatever position He has planned for me.

Thank you for everything.

#TeamASW #leukemiawarrior #atypicalchronicmyeloidleukemia #CANCERSUCKS #rarediseaseawareness

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