Alhamdulillah, I just got opportunity to re-write and publish the continuation of Khalid’s journal last week…moga semua dapat manfaat dr kisah yg ingin Khalid kongsikan dgn org ramai. beliau bercita2 ingin menulis sebuah buku ttg perjalanan hidupnya ttp xberkesampaian..Ya Allah, sampaikanlah salam rindu kami ini kpdnya di sana.. (Sumayyah)
Continuation of CHAPTER 7: NHL- NON HODGKINS LYMPHOMA
…So, I was given the first dose of Daunoruvicin and Vincristine through slow bolus. I started on the ALL High Risk Protocol. This is a treatment for Acute Lymphocytic Leukaemia. When I started chemo, I didn’t feel anything. Maybe my body takes time to react to the drugs. I was told that the red drug (dauno) can cause cardiac toxicity, red urine, hair loss, nausea, vomiting and decrease blood counts. Vincristine could give me Peripheral Neuropathy that is numbness of my fingers and toes and constipation. However, I pray to God that I would sail through this treatment without much side effect.
That night, my Uncle Zul took care of me because my mother needed a rest and she went to my cousin’s house. It was difficult of her to stay in that ward because it was crowded and the patients were all male. The next day, I was lucky to get a bed in the SW21 that is a first class ward. I was put in a four bedded room and later to a single room. Next treatment was MTX (Methotrexate) which was given intrathecally (meaning that the drug was given through an injection in the spine (Lumbar Puncture)). I also had L-aspariginase but it was withheld after 2 days because my liver enzyme (ALT) went up to 226 (normal is <40) which means that my liver cannot tolerate to this drug. In addition, I was also given dexamethasone and prednisolone. I completed my 4 round of dauno and vincristine, blood and cryo transfusions and finally on 20th of January, I was discharged. During this time, I made a few friends in the ward, they are Nik and Abdul Rahman. Both of them are 16 years old and have ALL. We spent time watching TV, chit chat and playing games whenever we are bored.
CHAPTER 8: MY 2ND ROUND OF CHEMO
On the 4th February 2004, I was readmitted for my second round of chemo. The regime this time is HyperCVAD-course A which is a combination of cyclophosphamide, vincristine, adriamycin, dexamethasone and IT ara-c and MTX. We departed from Malacca in the morning and headed straight to haemato clinic. The clinic was packed with patients waiting for their turn. As for me, thank God I was asked to go straight to the ward. I reached about the same time as Uncle Zainol from Miri. So, we end up sharing the same room. The next morning, I had a BMA (Bone Marrow Aspiration) done by Dr. Chua. I was relieved that he secceeded getting the bone marrow. Uncle Zainol was not as lucky as me because he had to go through three times of BMA. He seems to be in a lot of pain. The bone marrow result came the next day where it shows partial remission with BMI (Bone Marrow involvement) 8 to 10 %.
The following day, the nurses set a line and started chemo. I completed the cycle this time without any complication, alhamdulillah. But this time I lost more hair. After my blood count was normal, on the 19th of February, I was discharged. Praise be to Allah I did not have any complication accept for the LP. Dr. Chua failed to do it twice and I had to repeat the procedure by Dr. Ong. I hope next time I won’t face this problem anymore. I went home to Malacca. I stayed at home for only 1 week and I had a fever which was caused by an infection. I was admitted to Malacca Hospital on the 26th of February. I was given antibiotics which gave me a lot of pain during the infusion. After my fever subsided on the 1st March, I was advised to have a chemo port inserted because the doctors had a difficult time to set lines because my nerves had collapse due to previous chemotherapy. It was painful for me because it was done only under LA (Local Anaesthesia). I was discharged as soon as my wound healed.
CHAPTER 9: MY 3RD ROUND OF CHEMO
After 3 weeks, I went to HKL for the next round of chemo which is the HyperCVAD B, a combination of Ara-c, Methotrexate and lumbar puncture. This is a high dose drug compared to HyperCVAD A. My sister, Asma’ looked after me because my mother had flu and cough. This time, I had a mild infection. My mouth felt sore. The nurses gave me some mouth gargle. I shared the room with a nice middle-aged man who is a very pleasant person. His name is Pak Cik Wan Mohamad. He suffered from DVT that is “Deep Vein Thrombosis”. We talked about many things and shared our food. I stayed in the hospital for 23 days because my blood count took longer time to climb up to normal. When my blood count returned to normal, I was discharged but for only 1 week. I went back to my new home in Jasin, Malacca. We just moved to Jasin and the house was messy but my mother did not allow me to help with housework and unpacking out things because I must have enough rest and avoid dust for fear of infection. Thank God. I was well and at the end of the week, I was ready for the next chemo.
On the 5th of April 2004, I was admitted for BMA and the next day the doctors started me with HyperCVAD A. this is the 2nd time I’m going through this regime. I was well and there was no complication this time. I had a terrible time sharing the room with a patient who had lots of visitors and poor hygiene. But luckily I had some nice time with my friends Rahman and Nik. Rahman came from Penang to have his FLAG/IDA while awaiting for his transplant. He has no match among his siblings. So, he was hoping for an unrelated donor. Nik came in for his ‘B Block’ of the German Protocol. He had very serious mucositis at that time and he was confined to his room. Rahman and I visited him occasionally. We played games on his PS2 although he was on morphine drip. Both of them were high spirited and were very positive in their fight against the disease. The BMA result came after 3 days of chemo and it shows the presence of 8 to 10 percent blasts in my marrow. After this chemo, the doctors decided to change to MIDAC for the next chemo. This is another high dose drug regime which I have to go through.
I left the hospital on 21st of April 2004. the day before my siblings all came to have their blood taken for HLA (human Leukocyte Antigen) typing. This is to find out who would be match my blood for transplant later. Before I left, Abdul rahman had fever and severe vomiting. My mother and I sympathized with him. He was so sick and would not eat but he still can talk and make a joke with me. His brother Hanif was there to take care of him. The others in the room were Pak Cik Zainol and Pak Cik MatNoor. I was given a TCA appointment for MIDAC.
CHAPTER 10: FROM ALLAH WE COME AND TO HIM WE SHALL RETURN
When I was home, my friend Nik sent sms to me. He wrote the sad news of Rahman’s demise. I was shocked and sad that he had passed away but from Allah we come and to HIM we shall return. He was bleeding in his stomach, had asthma and kidney failure because of the side effects of high dose chemo. I must keep my spirit up and hope Allah will cure me.
On the 10th of May 2004, I was admitted in ward 21 to be given MIDAC regime consisting of Mitoxantrone, Ara-c and Dexamethosone. Before that, I was told by Dr, Jameela that this is a high dose and quite harsh compared to the regimes before this. I was told to drink a lot of water to avoid drug toxicity and kidney damage.
I started chemo on 12th May 2004. this time I lost all my hair including my eyebrows. Once finish, I was given 3 days home leave which I spent in Putrajaya in my auntie’s home. I was well and I didn’t realize that I have contracted the herpis zoster virus because I was neutropenic. Before I left for the hospital with Mak Long, Nik sms me saying that he has high fever with low blood count and low blood pressure. The next day he was sent to the ICU because of septicaemia. That same afternoon, Thursday, 20th of May 2004, Nik passed away. In 10 days, I have lost two of my good friends, this time I was quite ill because of the shingles. I was isolated because this disease is very contagious. After 2 weeks, I was discharged. The plan is after this I will have BMA and gallium scan and also ‘A’ block of the German Protocol.
I went home and spend my days indoors. I didn’t go out because my blood counts were low. A few of my friends came over to visit me and we palyed carom and RISK.
At the end of June, I was admitted for ‘A’ block. This regime is high dose protocol. Within 5 days, I was given a combination of 5 drugs that is MTX, Vincristine, Ifosfamide, Cytarabine and VP-16 plus intrarhecal (LP). The MTX caused me mucositis. Thank God it was not that bad and I could still swallow my food. On the following month, I did a gallium scan where the radiologist injected isotope into my vein 48 hours before the scan to check whether the disease has spread to othe parts of my body. Thank God the result was negative. Bone marrow were also normal and clear of blasts. So, the doctors planned to give me low dose of chemo while waiting for transplant scheduled on the 18th of October 2004. I had my chemo port removed in Malacca Hospital on the 4th of October. However transplant was postponed because of scabbies and infection at the chemo port site. I was worried because of the delay but this is a blessing in disguise because I was able to fast the whole of Ramadhan and only came for PBSCT 2 weeks after raya.
CHAPTER 11: Peripheral Blood Stem Cell Transplant (PBSCT)
After one month of resting at home I was due for my transplant. We traveled to KL on Sunday morning, 28th of November 2004. I brought quite a lot of my things because this time I was told by the doctor that I would have to stay quite a long time in the ward. Before entering the transplant room, my bags were sterilized and I changed into a clean hospital clothes. I was given a briefing on personal hygiene and care of food during the transplant because extra care has to be taken during the transplant process.
Next morning, I was wheeled to the Angio department to have my triple lumen hickman catheter inserted. It was dine under local anaesthesia (LA) without any sedation. It was terrible experience. I had to bear so much pain as the doctor tunneled through my tissues to get the line in. they took longer time than usual.
Once that done, I was ready for the next treatment that is TBI (total body irradiation). This will take 3 days with 2 doses daily……………
(Khalid’s journal stops here. Khalid left us to meet Allah the Almighty on 15th November 2006..allahummaghfirlahu warhamhu wa’afihi wa’fu’anhu) –missing him lots and lots.
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