Wednesday, 27 November 2013

Big-C has gone up to his lung...

Good day everyone,

To those who do not know, my job requires me to travel a lot. I spent more than half of 2012 outside from the country. Unfortunately, due to this, I missed a lot of possible hints on hubby's health condition.

Hubby had started his lectures (he was on study leave from mid 2008 until mid 2012). So it's normal for him to have fever and cough every end of semester. Hubby has quite a big tonsil; therefore it's quite easy for him to get sick.

[End Dec 2012]

Me and my kids returned home on 28th Dec 2012. Hubby had bad cough and on & off fever. He already went to DEMC to get some medicines + antibiotics.

[Early Jan 2013]
Hubby was still coughing badly. Until one point, the cough caused him backache (he felt like something pressured his back bone every time he cough). He told his oncologist; whom then instructed for ultrasound. The ultrasound was clear.

Hubby went back to DEMC; and he was given another set of medicines + antibiotics.

[Mid Jan 2013]
We went to DEMC again. This time the doctor gave hubby stronger medicines + stronger antibiotics. She said, "After one week if you still haven't recovered, come back and we will do chest xray".

Hubby took the med and finished his antibiotics; but his cough was still there.

[22nd Jan 2013]
** Not related to hubby's condition **
As I mentioned earlier, my job requires me to travel. My return was supposed to be for 3 weeks plus (home trip). I had booked for my flight to Melbourne on Friday, 25th Jan 2013. Accommodation also had been arranged.

On this day, I received email from a project manager to cancel my trip back to Melbourne and support the project from Malaysia. At first I was startled. C'mon, how come he gave me such a short notice. Anyway, given no choice, I cancelled all booking arrangements and made a booking at Grand Lexis PD instead :D.

[26th Jan 2013]
Syasya was not well and since doctor had told hubby to return if his cough is still there, three of us were at DEMC since morning.

I brought Syasya to meet her paed, Dr Koshi at the 1st floor. Hubby went to outpatient clinic alone. Syasya was done before I got a call from my husband, asking me to come down to outpatient clinic.

Hubby had a chest xray and we were called into the doctor's room. The doctor, my husband and I looked at the image. The first question from the doctor, "Are you a smoker?". Both of us shake our head and said, "No". The doctor then referred to a specialist and hubby was advised to go for CT scan.

In the meanwhile, I sent Syasya home and hubby stayed at outpatient resting area waiting for CT scan. The CT scan was done around 3 PM. The result came out few hours after that. It was confirmed that A MASS was found on hubby's left upper lobe lung.

I went home and realized something. Allah knows better than us, indeed it's true. Allah has planned our life and things that happen for reasons. Then only it hit my mind that my Melbourne's trip was cancelled because of this. It's better for me to be home instead of thousands miles away from hubby.

[27th Jan 2013]
Hubby was discharged around noon time. Since I had made prior booking at Grand Lexis, regardless with the recent shocking news, we headed straight to PD.

We didn't really think about the tumor. We tried our best to enjoy our short vacation before meeting hubby's oncologist on Thursday, 31st Jan 2013.

[29th Jan 2013]
Today was the day when I started to panic. How come I was so calm for the past few days since we first got to know about the lung mass? Because I thought there was ONLY ONE!!! I didn't cross my mind that two smaller tumors were also found in hubby's right lower lobe. How did I got to know? On this very morning, hubby asked me to take a copy of the report for him to submit to his faculty. And only today I got to know there was a report provided inside the CT scan envelope

CT scan date: 26th Jan 2013

I had a colleague in Dubai who had removed part of his lung in order to get rid of cancer tumors. So, my mind was thinking, "OK, there is only one on his left upper lobe. Maybe he can go for surgery to get the tumor removed, or worst case surgeon will remove part of his lung". But with the most recent news, one huge on his left upper lobe and few more on right lower lobe; my mind went blank.

Many possibilities came to my mind...
"Previously I thought surgery is feasible, but now left and right. How can he go for surgery in this case? Can chemotherapy help to kill the big one? Is chemotherapy safe for him? Can hubby go through chemotherapy towards the end? How will we cope with me working and him undergoing treatments?".
Looking at the devastated me; hubby said, "You have to be strong. If I am strong, you ought to be strong". From that very moment, I pulled myself together and started changing my plans.

If you still remember in my previous post, I mentioned about 'the abandoned 4life brochure'. This moment was when I regret my action the most. Being me, I didn't want to waste my time regretting on things that couldn't turn back. On my way to the office, I asked my younger sister to contact her 4Life upline (his name is Zizan) and tell him to meet me at my office.

After meeting Zizan (+ Qaiyum), I bought few bottles of 4Life Transfer Factor Plus (TF Plus) and 4Life Tranfer Factor Advance (TF Adv). TF Plus is for hubby and TF Adv is for Irfan & Syasya (and also myself). I was hoping TF Plus could help to kick out cancer cells from hubby's body and TF Adv could help to boost up my kids immune system.

**I'm not going to explain here why I decided to get hubby TF Plus. Certain people might think I'm trying to promote products here. You can google about 4Life Transfer Factor and cancer on your own :-)** 

[31st Jan 2013]
For the very first time, I accompanied hubby for his oncologist appointment. We brought with us CT scan images and report.

Dr Nik Muhd Aslan, hubby's oncologist said, "OK, then we will plan for your chemotherapy. Can you start on next Wednesday, 06th Feb?" That was fast, wasn't it? I asked about alternative treatment @ surgery. Dr Aslan said surgery would be complicated due to the size of the tumor (the biggest one) and also multiple spots. We agreed with Dr Aslan's suggestion.

One minor issue (or maybe it's major); there were not many MFH patients being treated at PPUKM (or maybe hubby is the only one?). Dr Aslan couldn't give us details of the treatment until he discussed it with other specialists. There are several drugs can be used for MFH, and they have find one that is the most suitable for my husband.

[01st Feb 2013]
We first shared with families and friends about hubby's latest condition. Alhamdulillah, prayers and unconditional supports were given by everybody since the beginning.

Few actually shared alternative treatments for cancer; including sabah snake grass (SSG). I was really interested in SSG and straightaway looked for it.

[02nd Feb 2013]
We went back to hubby's hometown. We broke the news to his family. Mum was shocked and afraid. We convinced her to stay strong and insyaAllah together we will fight the big-C. Although it was not easy, we managed to stay calm and not to over think about the future.

[03rd Feb 2013]
On the way back to Shah Alam, we stopped by at YPL Herbal Farm, Negeri Sembilan to get supply of sabah snake grass.

**Again, I'm not going to explain in details about SSG. Maybe we will have dedicated post about it sometimes later**

OK.. enough flashback for now. So little information with such a long story, huh? Let's summarize the important points..

What are the signs? Please pay attention of the following symptoms, especially if you are a cancer patient:
  • Always feel sick @ feverish (on and off)
  • Have cough for long time
  • Chest pain while coughing
  • Back pain while coughing
  • Cough with blood
  • Loss of weight
  • Losing your appetite
What were among our first actions:
  • Straight away put hubby on supplement (4Life TF Plus) to boost up his immune system
  • Get supply of 'air zamzam' (holy water from Mecca)
  • Stay calm, positive and strong
That's it for now. Till our next post.. take care!!!
Intan & Naim
Shah Alam

Tuesday, 26 November 2013

Medical reports from the past 2 years...

Dear all,

In this post, we are sharing few reports for your reference. Most of the terms are actually aliens to us; except to doctors of course. Important information from each picture are all listed underneath.

Discharge summary: 08th Aug 2011

  • Biopsy date: 03rd Aug 2011
  • Discharged date: 08th Aug 2011
  • Tumor size: 8.4cm x 5.9cm x 6.4cm **from MRI done on 30th Jul 2011.

 Biopsy result: 09th Aug 2011

  • Biopsy date: 03rd Aug 2011
  • Diagnosis: "malignant tumor" and "probably pleomorphic MFH"
  • Malignant tumor: A tumor that is malignant and tends to spread to other parts of the body
  • Malignancy: The tendency of a medical condition, especially tumors, to become progressively worse and to potentially result in death
  • Pleomorphism: In microbiology, is the ability of some bacteria to alter their shape or size in response to environmental conditions
  • MFH: malignant fibrous histiocytoma

Discharged summary: 19th Aug 2011

  •  Operation date: 16th Aug 2011
  •  Discharged date: 19th Aug 2011

  • Actual tumor size: 10cm x 7cm x 6.5cm
  • Removed margin: 14.5cm x 12cm x 9.5cm
  • Final finding: Malignant fibrous histiocytoma (MFH), pleomorphic type
  • Grade: 3 (Poorly differentiated - high grade). The cells and tissue of Grade 3 and Grade 4 tumors do not look like normal cells and tissue. Grade 3 and Grade 4 tumors tend to grow rapidly and spread faster than tumors with a lower grade.
  • Stage: **we didn't know**
  • What were in our head and our initial actions?
    • OK, it's cancer. It's a type of sarcoma.
    • The tumor was removed, insyaAllah (if Allah permits) there would be no recurrence and would not spread to other spots.
    • Hubby since then is banned from taking red meat, seafood and milk.
    • Hubby started taking apricot seed and fresh sour-soap juice.
    • We did not care about the stage. For us, regardless of the stage, if aggressive treatments were needed, then we would go for it.
  • What were MY mistakes? 
    • I DID NOT properly digest the final lab report.
    • I MISSED/OVERLOOKED on the grading information. ** I got to know hubby's initial grade while writing this post :'( **
    • I SELDOM asked any questions to doctors.
    • I only knew MFH as malignant fibrous histiocytoma. I knew that it was soft tissue cancer; but didn't really look into the details. 
    • We relied 100% on doctors' advice and plans. Hubby went for regular check ups with orthopedic surgeon and oncologist. And hubby did all scans (MRI/CT/bones) scheduled by his doctors.

Discharged summary: 08th Mar 2012

  • Biopsy date: 07th Mar 2012
  • Finding: normal liquid **I have yet to search for the lab report**
Lessons learnt:
  1. Grading is MORE IMPORTANT than the stage. The grade will actually tell you how aggressive the cancer cells are.
  2. Read, go through and DIGEST all reports (lab reports, discharged summary, refer letters, xrays/scans instructions).
  3. Keep on asking questions (A LOT) to doctors. DO NOT BE AFRAID.
  4. Keep on looking/googling/searching for latest modern treatments as alternative for typical conservative treatments.
  5. Be more observant; alert on patient's health conditions (regular fever, cough, etc).
  6. Do not rely 100% on conservative treatments. Start taking supplements to boost up the immune system IMMEDIATELY. **To which, we didn't. No point of regretting our past mistakes. We look forward and started correcting what we did wrong at the beginning**
Plenty enough? Overloaded with information? Not to let everybody dozes off; let's keep this post up to here. Wait for our next posts which will be more interesting (hopefully). We will share our stories on:
  • When did we know hubby's cancer spread to his lung?
  • What was the first action?
  • How did we cope?
Till then... take care!!!
Intan & Naim
Shah Alam

The first time we got to know...

Dear readers,

Among many questions that are always address to us;
  • How did you first detect about the cancer?
  • What was your reaction?
This happened almost 2 & 1/2 years back, so we would not be able to tell the exact date on how we first found out about it. We are trying our best be as accurate as we can...
[Mid May 2011]
Hubby first complained about pain behind his left thigh. I still remember at that time we were at IKEA Damansara. We thought it was just a minor muscle pain; which as most people normally do; we just ignored it thinking that it would go away after awhile.

[Early July 2011]
Somehow the pain was still there (on & off) until July'11. First week of July we went back to hubby's hometown because my late father-in-law was not well. Since one of hubby's uncle is good in alternative treatment (or most people called "cara Melayu" - Malay style), we asked his uncle to give hubby a massage. His uncle said, "Owh.. this is just muscle pain (salah urat)".

I flew to Algeria somewhere on 11th July'11. Without having me next to him, hubby went to clinic to check on his pain. At first he went to nearby GP that we normally go, the doctor said, "It's not liquid" and advised hubby to go to the nearest hospital for further check".

[29th Jul 2011]
Hubby went to see Dr Luqman, a general surgeon at DEMC Shah Alam, whom then referred him to Dr Mahamud; orthopedic and trauma surgeon. Dr Mahamud did an ultrasound and found lump on hubby's left thigh. He then instructed for MRI (magnetic resonance imaging) to be done on the very next day. Since the scan was covered by medical card, hubby was admitted at DEMC for one night.

[30th Jul 2011]
MRI result came out on the very same day the scan was done. The result showed a sign of 6cm X 8cm tumor on hubby's left thigh, which unfortunately was located near to main blood vessel. Because of the tumor size and location, Dr Mahamud told hubby that DEMC was unable to take his case (if we wanted the tumor to be removed there) due to the fact that they did not have vascular team and sufficient blood bank to cover in case of any emergency during the surgery. Dr Mahamud gave two options; either we wanted hubby to be referred to PPUM or PPUKM (formerly known as HUKM). We chose PPUKM.

[02nd Aug 2011]
It was also 2nd day of Ramadhan (Muslim's fasting month). Hubby went to PPUKM with abah to see the orthopedic team. Hubby's case was referred to orthopedic specialists, Ms Hazla & Dr Yazid. They straight-away arranged for biopsy to be done on the very next day.

[03rd Aug 2011]
Biopsy was done at PPUKM. Doctors had advised that the result would only come out one or two weeks after. If the result came out with no alarming findings, there was no need for immediate surgery to be done.

[10th Aug 2011]
Hubby received call from PPUKM a week later. The biopsy result was out stating that the tumor is a type sarcoma. I couldn't recall the full details of the result (will try to post if I managed to find the report from hubby's file). Hubby went to PPUKM and specialists instructed for immediate surgery. Since I was thousands miles away (I was in Algeria), we asked the surgery to be held until my return. I managed to catch my flight on Friday, 12th Jul 2011 and reached home on Saturday, 13th July 2011 late evening.

[14th Aug 2011]
Hubby was admitted to PPUKM on the evening. I was planning to stay with him; which then denied by the staff nurse saying that I could only stay after the surgery.
Today was the day when orthopedic specialists told hubby on the complications that might arise during the surgery and what actions would be done to save his life. Since the location of the tumor was very close to the main blood vessel, there was a chance while removing the tumor, his blood vessel might be ruptured. If this incident happened, bypass would be performed on his left leg. The ruptured blood vessel would be replaced with blood vessel taken from below the left knee.

[15th Aug 2011]
Hubby was ready for the surgery. Around noon (or was it after lunch time), we were informed that the surgery had to be postponed due to unavailability of vascular team (another urgent case).

[16th Aug 2011]
The surgery went smoothly. Since I was aware of the possible complication; first thing that I did was to check on his left leg. "Syukur Alhamdulillah", I recited when I saw only one bandage on his left thigh; means no bypass was done.
Hubby was in the hospital for another couple of days. Orthopedics, nursing lecturers, physiotherapists, etc etc were among many visitors that came to check on hubby.

[19th Aug 2011]
It was my 33rd birthday, and the best birthday present for me (and him of course); hubby was discharged from the hospital. Next follow up with orthopedic was arranged few weeks (or a month) later. Next treatment would be planned based on the biopsy result done on the resected tumor.

[In between of August until January 2012]
The lab report came out very late (maybe it was due to festive seasons). Hubby was referred to oncology based on the biopsy done on 04th Aug 2011. Oncologist then started to plan for follow up treatment @ radiotherapy (RT). At the beginning, 24 rounds of RT.

Hubby went back and forth to PPUKM for checkup with RT team, molding and etc. RT was officially started somewhere mid of Oct 2011. Hubby went to PPUKM daily from Monday to Friday for his RT. Somehow after 1-2 weeks, hubby had chicken pox. His RT was put on-hold until he recovered. After hubby completed all 24 rounds of RT, doctor added another 12 rounds to make it in total 36 rounds.

Overall, RT was OK except when hubby had his chicken pox. RT made his skin very very dry; hence making his chicken pox scars worst. Staff nurse at RT gave him some iodine and told him to apply on his left thigh. But the iodine somehow make it worse :'(.

We went to nearby GP, our doctor told us to use saline (the one that is used to clean contact lenses) instead of iodine. That's how I started my 'career' as a private nurse (errrkk.. only to clean his wound daily).

Hubby completed his RT mid of January 2012.
Aside from hospital treatments, people might wonder whether my husband took any supplements, medicine, herbs as alternative treatments.
The answer is yes. My husband took:
  • Apricot seed (not B17, only apricot seed)
  • Sour-soap juice
Hubby religiously took both of these for at least 6 months. Then only left apricot seeds; which was also being abandoned from time to time after one year.

There was one time after hubby had his surgery, one lady came and passed me 4Life Transfer Factor's brochure. Unfortunately, unwise Intan (yours truly) took things for granted. My thought was, "Certain people just want to take advantage of others' less fortunate situation and try to make money out of it". The brochure was left on the side table after hubby was discharged.

[In between of January 2012 until January 2013]
There was no treatment. Only regular checkups and scans (MRI/CT/bone) alternately. Another biopsy was done on hubby's left thigh in March 2012 after a capsule was found from latest MRI. The biopsy result came out clear; only normal liquid found.

So, that was a long history huh? We let the story stop until January 2013. We will have another post to tell how and when we found out that hubby's cancer has spread to his lung.

If you also notice, there was no where up there mentioned about sarcoma, MFH, etc etc. Why do you think nothing was mentioned? We just realized it too. You will get your answers soon.

What was hubby's first reaction? And what about me? Frankly speaking, because I was far far far away from him, hubby didn't really talk about his feeling to me. Maybe he didn't want to make me worry. I was worried sick of course!!! But since it was happening too fast. I was in Algeria and frantically in hurry to get my flight ticket changed to the earliest date. I was not allowed to over think about it until I got the plane.

Whatever it is, everything happens for a reason. Until now, we are trying our best to stay calm and face the fact that the cancer is there. We are leading our lives as before; with extra precaution of course. Being sad, depressed and frustrated (with our fate) lead us to nowhere.

OK.. it's quite a long post we have got here. We will share more information in coming posts.

Till then... take care!!!

Intan & Naim
Shah Alam

Friday, 22 November 2013

What is sarcoma? What is MFH?

Dear readers,
[20th Nov 2013]
We are at PPUKM (previously known as HUKM); hubby is having MRI scan on his left thigh. So, while waiting for hubby, it's better for me to keep my words.
[21st Nov 2013]
Huhu.. I was supposed to post this entry yesterday. But, before I could even reach 2nd paragraph, hubby came out from MRI room. :-)
OK.. My husband was first diagnosed with sarcoma - malignant fibrous histiocytoma somewhere early August 2013. First question came to my mind: what is SARCOMA? Thanks to the internet; I got my answer.
"Sarcomas are rare cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues.
There are about 100 different types of sarcoma that fall into three main types:
  • Soft tissue sarcoma
  • Primary bone sarcoma
  • Gastro-intestinal stromal tumours or GIST – a soft tissue sarcoma found in the stomach and intestines"
[22nd Nov 2013]

Sorry, this post keeps on being postponed due to several reasons. Let's continue. 

My husband's sarcoma is classified as Malignant fibrous histiocytoma (MFH); cancer of fibrous connective tissue. Basically MFH is categorized as soft tissue cancer. MFH (which has more recently being classified as pleomorphic undifferentied sarcoma (PUS)) is considered the most common type of soft tissue sarcoma. It has an aggressive biological behavior and a poor prognosis

So, now you know what is sarcoma and MFH. Many people might have heard of sarcoma but not MFH. Even in my husband's case, he is the only MFH patient being treated at PPUKM; either under Oncology or Cardiothoracic department.

In our next post, we will talk about how and when we first found about hubby having this MFH.

Till then.. take care and have a nice day!!!

Intan & Naim
Shah Alam

Tuesday, 19 November 2013

Setting up dedicated blog

Dear readers...

It has been awhile since the idea crossed my mind; to setup a dedicated blog to log down all updates, treatments, progress, tips, etc etc.. All related to my husband's cancer journey.

Yesterday (or maybe it was the day before yesterday) my husband voiced out his intention of creating this blog. We know it will be a challenge to BOTH of us to keep on updating the blog; due to our already-hectic schedule (me working, him going back and forth to the hospital, entertaining+screaming at the kids, socializing with families and friends, etc etc). InsyaAllah, we will try our best to consistently post new updates regularly; minimum once a week.

In our next posts, we will share about:

1) What is sarcoma?
2) What is malignant fibrous histiocytoma @ MFH?
3) How and when we first found out about MFH?
4) How do we feel when we knew about MFH?
5) What was the first treatment hubby had for MFH?

Let's limit the scope of the coming few posts to these 5 topics first. Please prepare yourself for a long and boring posts. We will try our best to make these posts as simple as we can.

Till then.. take care and have a nice day!!!

Intan & Naim
Shah Alam