About me and my diseases

So I will give you a brief history of my journey with blood cancer, starting with my initial diagnosis working up to present day!!

2005 – Initial Diagnosis

I was 17 in the second year of my A-levels at school (Maths, physics and biology… ouch). I was sleeping a lot and noticed a lot of bruises and mentioned it to the nurse at my GP’s at a routine appointment. They did a blood test a few weeks later (after much persuasion from friends/family). I got a phone call from my GP that evening asking me to go straight to hospital! My blood counts were so low (roughly): HB- 84, platelets – 5, neutrophils – 0.1. This meant i was high risk of bleeding and infection. (See the blood and bone marrow link for more info https://bloodwise.org.uk/all-blood-cancers/understanding-blood-cancer)

Whilst an inpatient I was given supportive therapy of red blood cells and platelets. They also ran several tests including bone marrow biopsies (ouch!!!!), ct scans, x-rays etc to find the cause. I was diagnosed with Very Severe Aplastic Anaemia. Aplastic anaemia is an blood disorder where your immune system is attacking your bone marrow and stopping it from producing blood cells. (See http://www.theaat.org.uk/ for more information)

2005 – ATG treatment

So as a typical teenager I tried to continue as normal a life as possible. I took my exams, went to my end of year prom and applied to university. I was given supportive therapy throughout of red cells (3 units every 2-3 weeks) and platelets (1 bag every 2-3 days), but this wasn’t a long term solution I was practically at hospital every day!!

So the decision was made to defer my university place and head to St Georges hospital for treatment called ATG. ATG is an immune suppressment which suppresses the immune system giving your bone marrow a chance to recover. ( See http://www.theaat.org.uk/immunosuppressive-treatment-atg) I was treated with horse and rabbit ATG. Both occasions I was in hospital for around 3 weeks during the treatment in isolation so my main side effect was boredom. I was very lucky and got limited side effects from the treatment (only 2 days of flu like symptoms) and avoided infections.

The second course of ATG put me into remission and my blood counts increased enough to allow me to attend university where I studied Mathematics.

2006 – 2011: Freedom

Here I got a few years freedom from the disease. I was still attended monthly hospital appointments, I was still high risk to infections as I was on an immune suppressant called ciclosporin and I was on a drug called desforol to reduce my iron levels, BUT i was living a fairly normal life! I joined the rowing team, I did a summer working abroad in Corfu, I went out with all the other students, achieved my first in mathematics and qualified as a Les Mills Body Attack instructor. I then got new job in February 2011 as an Insight Analyst in London for a company called AIMIA.

2011 – Relapse I and BMT I

I had just started my new job in London when my blood tests began to show a downward trend, but by  the summer I was back on red cell transfusions. After a bone marrow biopsy it showed my Aplastic Anaemia was back with a friend called MDS (Myelodysplastic syndrome) with monsomy 7. https://bloodwise.org.uk/myelodysplastic-syndromes?gclid=CKmRsdHvgMgCFRFmGwodW1EL0w

Now it was time for action, the only course of treatment was for a bone marrow transplant. I didn’t have a related donor so the search began. Luckily we found a 10/10 match and I was admitted to Kings hospital in August 2011 for my transplant.  Although before being admitted I did a 10km race to raise money for anthony nolan!! As you do!! Raised a few £k though so was worth it!!

270485_2265197468937_3806325_n

I had chemo regime FBC (fludarabine, busulfan and campath). Overall I think I had the standard side effects but wasn’t as bad as I expected: sickness (but was mostly managed and just nausea), diarrhea, achy body, cramps, acidic stomach, hair loss, dry skin, etc. For me the nausea and vomitting was the worst thing. I have a phobia of being sick and just the idea freaked me out. The nurses made a massive effort to keep on top of my antisickness though, and after one vomitting episode decided it was a good idea for them too as I get so panicky and distressed!!

I was very lucky and didn’t get any serious infections or GVHD and was out of hospital quite quickly though by day 15. Pictures of me having my head shaved, and the stem cells!

304149_259541070753119_974237014_n 319105_259540907419802_226189217_n

I moved back home with my dad for my recovery, London wasn’t really an advised option with a brand new immune system and trying to live by myself might have been a bit much! Recovery took me quite a long time with a few bumps. I got mild GVHD in various places but mainly skin and mouth. The skin was like bad ezcema, all flakey, dry, itchy and generally uncomfortable. This is what it was like on my hands. My fingers were the worst. It used to be so painful to bend them!!

277261_428051723902052_1079473402_o 277386_428051483902076_896274265_o

My mouth was horrid, it was really sore like the top layer of skin had all gone. If i accidently ate anything with chilli or that was quite acidic I knew about it very quickly!!! My thyroid also went berserk on me and then stopped working. When it went hyperactive it made me feel really unwell, I felt really nauseous all the time, sometimes vomitting, neck pain and couldn’t sleep. It then went under active where I was just constantly exhausted and weirdly I couldn’t sweat!! I was put on thyroid replacement therapy.  I started to not tolerate the ciclosporin anymore and had to be switched medication to part MMF. I believe i only got one infection that led to me being readmitted for a week or so, after which they removed the hickman line. Due to pure stubbornness though I was back in the gym within a few weeks and working part time from January onwards, despite still feeling pretty rubbish!!

So the next year or so kind of plodded along….. I never felt 100%, but i didn’t feel terrible either. I got back working full time and living in london and was back going to the gym. I got loads of colds and flus, but managed to stay out of hospital. The one thing they didn’t manage to do was get my off the immune suppressants. My chimerism (% donor) didn’t ever come up overly high and I was still on blood products for ages. Consequently I was kept on the drugs for over a year and a half post transplant!! During that time my phobia of being sick just got worse, and more of a daily challenge too.

2013 – Relapse II

In early 2013, around February, I started to develop some pain (and I mean pain, I could barely drink water!!) at the pack of my throat with some tiny white marks. After a visit to kings the doctor decided it was either mucositis or GVHD as my blood counts were low. So he gave me a load of soluble pain killers and some steroid mouth washes.

After a few days it became apparent it was getting worse. And it no longer looked like mucositis, it was a fungal infection. My temperature started to spike and I felt terrible. I had barely eaten or drunk for a few days and even swallowing made me gag as it was all right at the back of my throat. When my temperature raised to 38 I was admitted to kings to get treatment.

Usually infections can end up being quite a short stay, but this one wasn’t, I ended up in hospital for 6 bloody weeks!! I had this fungal infection, I got chicken pox, which then turned to shingles, I got a stomach bug which flared up a hiatus hernia. I basically spent 6 weeks in hospital spewing and with incredibly bad reflux. I had to have my most feared procedure, endoscopy to try and work out why i was being sick. I was on constant antisickness with a syringe driver, which then caused an absess in my arm!! Overall I lost 10KG in weight and all my muscle, by the time I was discharged I could barely walk, I also ended up in quite a dark hole of depression. Chicken pox, looking fiiiitt!!!:

78037_10100373288999885_2082690675_o

Whilst in they did a bone marrow biopsy and it became apparent that my MDS had returned with vengeance. After a few weeks back at home wih my parents to regain some strength the doctors decided to start me on a chemo called azacitadine. http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individualdrugs/Azacitidine.aspx

Mentally I was really struggling to come to terms with being ill again, being so weak and freaked out at the idea of being back on chemo and especially as an outpatient. I was worried it would make me vomit, etc (despite the 6 weeks being sick I still had the phobia!!) and that I wouldn’t cope at home. My CNS decided that we could admit me to administer the drug so I could see how i dealt with it. This did not help my mood at all!!! I was terrible, crying everyday, barely doing anything. I got discharged early as mentally I wasn’t coping with being an inpatient, but being at home wasn’t much better. I was a mess!! I ended up on antidepressants (which I’m still on now!!) which seemed to help me see the light.

I had 6 months of aza cycles, 5 days on 3 weeks off. With aza you you in and have an injection once a day. For me the only real side effects were tiredness, constipation, blood counts dropping and inflammation at the site of the injection. So I was able to carry on as normal. Over the 6 months i started to build up my strength. I got back to the gym, went to knitting clubs, out with friends, and I worked in my in between weeks. My blood counts started to improve quite dramatically over this time too, especially when they started to administer DLI, donor lymphocyte infusions too.

After around 6 cycles the doctors were happy i was in remission. My counts were amazing and I felt amazing too!!  2014 and start of 2015 were my best years to date!! My fitness was amazing, I even ran the london marathon in 2014!!

1966041_10203600867681785_997207954428592805_o

In April 2014 I did my Body Pump qualification and after that point I just got stronger and fitter!! My 5k time got down to 24:20! I did the Brighton half marathon (with no training!) and got 1:52! I started swing dancing! I got a promotion at work and started working in a new team. I was making loads of friends in London and generally loving life!!

2015 – Relapse III and potential BMT II

But now here we are again….. In July 2015 my blood counts started to drop slowly. To the point where the doctors wanted to do a bone marrow biopsy, and it turned out the MDS was back AND I was showing the monosomy 7 defect again.

We tried a round of 7-aza, but it didn’t do anything. My blood counts just continued to get worse and worse. I was (and still am) on at least weekly platelet transfusions and 2 weekly red blood cells. They did more biopsies and it showed that the cancer was developing fast than the chemo was working, so it was time to reevaluate the plan.

So the plan is still being discussed as you will see in my blog….. however the general idea is to nuke it all with chemo and put some new bone marrow in!!! But at the moment I’m lacking donors and funding!!

To be continued…….

Advertisements

10 thoughts on “About me and my diseases

  1. Rita

    wishing you lots of strength, hope and luck. my husband has been diagnosed in July 2015 and he just received ATG at PCH. He has Aplastic Aneamia with overlapping MDS. Keeping fingers crossed for you that they will give you all what is needed to get you on the road to recovery.

    Like

  2. This is the first time I’ve sat down properly this evening to read your story after what I considered to be a day of hell at work…

    …and now my day seems like wonderland and I feel like a douchebag for complaining so much about life all the time especially when good people like you and many others are going through such things with such a great positive attitude.

    Keeping everything crossed for you. I haven’t been the worlds closest friend or anything but I hope you keep fighting and I hope everything goes good. Let me know if you need anything. Xx

    Like

  3. Emma Castel

    Hi Emma P, good to hear you’ve had a good Christmas, out of hospital too. I Think of you often, lovely to keep in touch with you here. Sending you best wishes. Keep smiling, even when you don’t feel like it.😀

    Like

  4. Three words Emma, YOU ARE AMAZING ! I wish you could link your page to the MDS UK Community page. You give so much hope to others in the battle with your stamina and strength. I love the fact that you knit and sew and make things in class and in your home, keeping your mind active is a great help. Just one more thing, have you thought about writing a book, your notes and records are very good and interesting and would make a smashing story of hope and by the way, if I lose my hair through my MDS I shall go smooth like you, it suits you. Thanks a million. ♥

    Like

  5. G’day there Emma. I was researching Severe Aplastic Anaemia (SAA) and I found a post about your story on Facebook. You were mentioning that you needed a second bone marrow transplant. I was worried as it was an older post. So I woke up early to search and see that you are okay, and here you are. Thank goodness! Are you doing alright at the moment? My name is Charles MacKenzie. I am from Sydney Australia. My situation pretty much mirrors yours except I have never been able to find a donor. I was diagnosed with SAA in 1988. My brother was a close match, but a mismatch for a transplant. So I was going to have a mismatched transplant in London in 89. But at that time the survival rates were dismal. So I elected to save everyone the bother. I would take whatever was coming for me down here in Australia. I did numerous rounds of ATG. Nothing worked. Then I got serum sickness (had it twice and it stopped my heart once). And I was well and truly on the brink. Anyhow its a long story. I have have fallen out of remission before. Now I am going reasonably well. Just hanging in there and loving each day. Especially today as I discover you’re here. I am by the way a health care advocate down here in Australia. I ran a campaign for victims of tainted blood transfusions. Unfortunately if you had SAA in the 1980’s then there was a high chance of picking up a virus. I was one of those. But like I say I am still here. I will be following your blog from now on. Inspired by you!!!!!!!!!!!!

    Like

  6. Sandy

    Emma,
    Thank you so much for writing. I just spent the last week binge re-reading your blog. I discovered you probably about a year ago when I was just googling for any information about MDS. I was diagnosed in 2013, and were just doing the ‘wait and watch’. Numbers started changing this year and now I am waiting for a BMT. You are an inspiration and have been a wonderful source for information as I get ready for my hospital stay. ~Sandy

    Like

  7. Anthony

    Was struck by your courage and determination. An example to us all. I had lymphoma in 2008, then MDS in 2015, and a stem cell transplant January 2016. It’s very useful to read about someone else’s experience, and good of you to share it. I wish you all the best.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s