I was diagnosed with GIST following surgery in April 2018 to remove a 10cm tumour from my small bowel, metastatic disease from the peritoneal cavity and a bowel resection. I was advised that I was at significant risk for recurrence of GIST due to the size of the tumour and the fact that it had metastasized and therefore started taking Imatinib (400mg) in July. 2 weeks after starting Imatinib, a routine blood test showed high calcium and creatinine levels and I was advised by my oncologist to stop taking Imatinib with immediate effect.
Investigations started to find out whether the high calcium was caused by the medication or by an auto-immune disease called sarcoidosis, which is thought to have developed as a result of living with undiagnosed GIST for many years. After ongoing investigations between Oncology and my sarcoidosis specialist, and a hospital stay to treat the high calcium, it was decided that the most likely cause was the unusual amount of sunshine experienced in the Summer of 2018. Sunshine and sarcoid do not mix well.
Fast-forward to the end of September 2018, and my calcium levels have started to stabilise thanks to steroids and I have restarted Imatinib at a reduced dose of 100mg. I now have everything crossed that I am able to tolerate this dose and that my calcium levels remain stable.
During all of this, a recent PET scan showed that I am currently GIST free. This is a great relief. It seems strange now focussing on getting back onto Imatinib and taking a cytotoxic drug that can cause side effects, when I feel so well, but I have to focus on the encouraging stories I hear from fellow GIST patients who talk so positively of the protection or delay it can provide in future recurrence.
In 2009, I spent an afternoon bent over in agonising stomach pain, I wanted to call an ambulance but was embarrassed about causing a fuss. Then, whilst visiting a friend in August 2011, I awoke in the night with the same crippling pain, thinking I was going to die. When my friend saw how gaunt I looked in the morning, she took me to the doctor. The doctor suspected appendicitis and sent me to the local A+E for investigation. Whilst there, I experienced sweats, fever, confusion and chills. 4 days later, an appendicectomy was performed. After the operation, the doctor advised that ‘it was a bit of a mess in there’ and that they might need to go back in. I was treated for sepsis for 3 days and then released. That was the end of that, or so I thought….
18 months later I found myself bent over in pain again thinking ‘this feels just like the appendicitis….’. It felt like there was an alien fighting its way out of my bowels. I was seen by an out-of-hours doctor, who suspected adhesions from the appendicectomy. Over the course of the next year, the pain would return randomly. I was seen by more out-of-hours doctors and sent away with diagnoses of adhesions or gastroenteritis and sent to the pharmacy for painkillers and anti-cramping tablets.
By September 2014, I felt overwhelmed with fatigue. I’d had enlarged lymph nodes for months. I saw doctor who seemed concerned and referred me to hospital for tests. After blood tests, scan and visits to various hospital departments, I was diagnosed with an autoimmune disease called sarcoidosis, which causes lesions to form in organs, impairing the function of affected organs.
In August 2015, whilst preparing to go out for my birthday, I felt as though I was coming down with the flu. I spent the rest of the week in bed with fever, confusion and chills. Strangely, similar symptoms returned each following birthday, along with more acute abdominal pain, which was considered to be gastroenteritis.
In October 2017, I awoke with chills, aching body, sweats and fever. I went to the doctor and a urine infection was suspected, despite no evidence of one. This would be the beginning of much confusion. Over the next 6 weeks I experienced fever over 38 degrees, chills that would cause my whole body to shake and lower abdominal discomfort. I continued to see various doctors, and started to report blood in my stools. Over the course of 6 weeks I took antibiotics. At one point, I called 111 as I had black stools, and an ambulance was sent out, but as my essentials were fine, I was referred back to my doctor. I was referred for a kidney scan. Nothing was found from the scan and just before Christmas 2017, I started to return to ‘normal’ health.
Then in February 2018, whilst having afternoon tea I suddenly bent over in familiar pain. This escalated to rapid pulse and the feeling that I would collapse. My friends called an ambulance and I was taken to A+E, vomiting blood and in violent pain. In the early hours, I overheard the consultant say that I was ‘complex’ and could go home and return to see my doctor the next week. Blood test results showed that my CRP was extremely high, and kidney stones were suspected despite the hospital saying this was unlikely due to nothing showing on my kidney scan. I was told to return for more blood tests later in the week and my CRP had reduced, but lower abdominal pain persisted. The following week, I asked to see the doctor who had taken my swollen lymph nodes seriously back in 2014. As soon as she saw me, she knew something was wrong - I was crying from the pain in my abdomen. She referred me for an urgent ultrasound scan of my abdomen, which showed a complex mass on my right ovary.
I was sent for an MRI scan which showed that the mass, measuring 10cmx9cm, was actually coming from the small bowel. It was then suspected that I had small bowel lymphoma (my enlarged lymph nodes caused by sarcoidosis confused matters) and I was referred for a biopsy of a lymph node and to haematology. A couple of days after the biopsy, I received a call from my new haematologist to say that the first findings from the biopsy were showing sarcoidosis. The haematologist explained that he’d already spoken with a bariatric surgeon who thought that it could actually be a GIST. I’d never heard of GIST and Googled it whilst on the phone to the haematologist. I asked him how GIST was treated and he explained that usual treatment was surgery followed by targeted treatment, as GIST couldn’t be treated by ‘standard’ chemotherapy.
In April 2018, an operation was booked and I awoke from 5 hours of surgery on a high dependency unit to find that the mass had been removed along with 10cm of small bowel, my right ovary (to which the tumour had grown) and 2 nodules from the peritoneal cavity. I stayed in hospital for 10 days, in which time I had sepsis, ileus (I experienced the dreaded GI tube), anaemia and blood transfusions. Recovery felt excruciatingly slow. I totally underestimated how long recovery would take. 6 months later, and I am pleased to be fully mobile and think the surgeons have done an amazing job of restoring my bowels to normal function.
In July 2018 I started to take 400mg Imatinib and saw this as a positive move forward in my GIST journey. After 2 weeks, a routine blood test showed high calcium and acute kidney injury and I was admitted to hospital for investigations and treatment. It turned out that a combination of the unexpected heat wave combined with sarcoidosis caused high calcium levels - there was an epidemic this summer amongst sarcoidosis patients. With this finally under control, I have restarted Imatinib on a reduced dose of 100mg, and I have everything crossed that I can tolerate this, and start to look forward to the future, and make life plans again.
A recent PET scan has shown that I am currently GIST free – the best feeling in the world. My lymph nodes still light up on scans like a Christmas tree and my blood count is not where it should be so lymphoma is now back in consideration, with a lymphadenectomy planned in November 2018 to investigate further.
I signed up for support with GIST Cancer UK as it’s hard to find people to talk to and share GIST experiences with, being such a rare cancer. I’ve found it to be an essential part of recovery.
>> Read More: GIST Patient Stories