As a part of our Faces of Courage series, we are featuring a patient or caregiver story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.

Our Patient of the Month for March is  Kamel Ahmed. Here is his story:

GISTory

It was a nice sunny ‘end of August 2019 day’ in Amsterdam when I was asked to help the neighbors carry a large refrigerator down the narrow stairs of the old Amsterdam apartment blocks. On any other day before that, I would not have had any issues with carrying heavy equipment. However, that day once I took the first step down the stairs, it was like my chest and heart were about to explode. It took forever until I was done and had to take many pauses in between to catch a breath. Once I reached home one of the strangest things happened when I went to the toilet. I was seated and felt something strange exiting my body and I looked down and it seemed like my secretion was almost half a gallon of blood!?! Scary stuff! You would think, seeing such a case, you immediately call the doctor for a check-up. But no, I was my usual stubborn self who thought this was a normal thing to occur after carrying down so much weight and sweating my socks off. I told my wife and she started to scream and asked me to make an appointment with my doctor. My response was, “Yes, I understand your concern but once this happens again I will for sure do so…”

Kamel Ahmed

Kamel Ahmed & his family, Amsterdam, Netherlands

A few weeks passed (now it’s Sept 2019) and I started seeing black stools regularly, walking for long became difficult and had sweaty nights on a regular basis and that is when I started to be more concerned. Also, I had a strange pain in my lower left abdomen which felt a bit swollen and when I put my hand on it, it felt like I could feel my heart beating. So, I called my doctor and asked him to do a stool and full blood check. Reports showed anemia. He immediately made an appointment with a gastroenterologist, who had room a couple of weeks later towards the end of October. I went there with my wife and I had already lost a few kilo’s and the doctor asked me so many questions and all I could think about was, “What can this be? Is it Irritable Bowel Syndrome (IBS), an innocent intestinal cyst, or could it really be cancer?” At the end we agreed to have an endoscopy and colonoscopy appointment towards the end of the year (Dec 27th, 2019) which was almost six weeks after the meeting, but I had to finalize quite a few work-related topics abroad.

Days passed by and I was no longer myself and was literally limping and had to carry my legs to get somewhere. Sleeping normally at this point was a thing of the past as I had to wring my wet clothes and change the sheets every night even in the coldest nights. December 27th came, and I drank the disgusting salty watermelon taste laxative the night before the colonoscopy. I went there fully drained, fatigued, and just wanted to make sense of what was going on. The check was made, and nothing could be seen in the large intestine nor the stomach and therefore further investigations were demanded by the gastro-specialist. Also, my Hemoglobin (Hb) was barely 4 and I required a blood transfusion.

Two weeks later around mid-January, I had my first ever slides through the infamous donut (CT scan) and four days later while on the plane back from a business trip I got the dreaded call that I had to head to the hospital and that it did not look good. I shared the news with my wife, mother, and best friend and we all headed there together to meet the doctor.

She said one thing is for certain : “You have cancer. It could either be in worse case, a bad soft tissue sarcoma or if you are lucky, GIST. I have forwarded your case to a prominent professor in oncology specialized in sarcomas and GIST at the Leiden University Medical Center (LUMC). Your appointment with him is 23rd January, but you will need to do a biopsy very soon to determine what it is.”

That moment and that feeling was indescribable and everyone was gutted. I recall how everyone was shaken and looked and I did not know whether to console them or feel sad about facing my own mortality. The biopsy was done a day after, but things went from bad to worse and I did not know whether it was due to the needles entering my abdomen or the uncertainty of what I was facing. My gut seemed to have blown up afterwards and I could no longer eat much and only sleep all wet in sweat and tears. In addition, the bleeding in the stools did not slow down. So, my wife and mother took immediate action and brought me to the emergency department of the LUMC where the professor worked.

A quick blood check was done, and the decision was made to stay there a few days until the blood was at a reasonable level and the bleeding had stopped. Luckily, I got to meet the professor the following day and he immediately gave me 400mg GLIVEC and told me I had a huge GIST mass which was 24x24x11cm in size and a smaller one of around 4cm in the liver, but the biopsy results might take a while due to it coming from another hospital. The sheer joy on my and my families face after hearing it was GIST was immense which is strange if you think about it. And so, started my journey with GIST.

Coping with GIST

I am still a noob when it comes to GIST but I have found a lot of energy by staying positive towards everybody. Luckily, I am surrounded by five angels : my mother, sisters, wife and daughter who would turn the world upside down for me and make the lesser days all the more tolerable.

Of course, the beginning was a roller coaster as I had to accept my new self with a miracle drug that came with its own side-effect add-ons such as fatigue, nausea, muscle pain, dry skin and abdominal pains. Luckily, as time passed by, everything subsided a little bit. Although the abdominal pains still occur but seem to decrease when I am more hydrated. Gyms are closed during the COVID year(s), so I do a lot of body weight exercises such as pull-ups, push-ups, chin-ups, sit-ups and dumbbell exercises. This helps a lot, as the muscle atrophy is quite significant when there is no exercise, and it seems GLIVEC worsens it. I also take naps sometimes and I am not ashamed to admit it as I work full time from home and it seems that when working from home, the workload is more? Walking and running also helps freeing the mind a lot but I have been neglecting it a lot due to immense laziness and fatigue.

For me the best time to take the GLIVEC is during dinner time, between the hot meal and the salad (Yes, I eat the hot meal first). I take it with at least half a litre of water to make sure the pill is encapsulated by the food and in this way avoid nausea.

GLIVEC has done magic so far! Last scan end of January 2021, the largest mass has decreased in size dramatically to 10cm (was 24cm) and the liver mets went into idle 1.3cm. Of course, the anxiety or the infamous “scanxiety” is still a reoccurring thing. However, the results have been promising and according to the professor there should not be any worry for the time being.

Advice for Fellow GIST Patients

First and foremost, join The Life Raft Group! This group contains so much experience, knowledge, and support. It is a gift that keeps on giving and the people on the GIST Chat platform never cease to amaze in the way they provide support, experiences, and hope.

Speak your mind with your oncologist and advocate! You are the captain of your own vessel and if you are worried about anything, make sure you are getting heard and get the necessary assistance to ease your concern, whatever it may be.

Hobbies I Enjoy

  • I enjoy reading and expanding my knowledge in a variety of topics. Whether it be History, Novels, Politics or Technology.
  • I love perfumes and have quite the collection.
  • Football (soccer) is my favourite sport that I unfortunately cannot play due to the risk of hard contact in the abdomen region. However, I watch the Spanish league a lot and am a hardcore FC Barcelona fan who also enjoys the English Premier League.
  • Gaming is also quite the hobby since the early 90’s.

Motto

” Every disadvantage has its advantage” –  Johan Cruyff

Nobody knows when it is his or her time to meet the creator but facing your own mortality is quite an eye opener. It made me think about how more self-centered I was before GIST in comparison to now. However bad GIST may be, there are many others in the world that have it much worse and could use a helping hand. In short, GIST is the disadvantage and being more selfless is the advantage gained.

Also, give it your all, never give up and always smile through thick and thin. Life is too short.

Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.

Criteria for Patient of the Month

  1. Patient must be a member of the LRG GIST Patient Registry
  2. Patient is an active member of the Patient Registry, continually providing medical updates
  3. Patient’s record should be at least 80% up-to-date
  4. Patient has GIST Patient Registry Online
  5. Patient must agree to provide consent to share his/her story to our GIST community on our website and social media

Criteria for Caregiver of the Month

Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.

Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: skaur@liferaftgroup.org

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