Showing posts with label kemoterapi. Show all posts
Showing posts with label kemoterapi. Show all posts

Wednesday, 9 April 2014

Side effects of chemotherapy/radiotherapy on our children which doctors might not have explained

Hi all, this post is just to share with all of you about some of the many side effects of chemotherapy (chemo) and radiotherapy (RT) on our children. Banyak side effects kat sini yang doctor tak pernah explain to me or my hubby masa kitaorg buat chemo for Aisy... ni semua atas dasar usaha research sendiri dan bantuan daripada org2 yg tak dikenali yang share fakta2 ni.. sorry tapi mostly memang in English.. susah nak cari in bahasa..

Selalunya doctor or hospital selalu ceritakan side effects yang immediate, yang kita akan nampak semasa anak2 kita tengah buat chemo or RT.. macam rambut gugur, kulit jadi gelap, muntah2, ulcer, loya, darah merah turun, immune system turun dan mcm2 lagi.. itu yang selalunya akan jadi masa chemo or RT course dijalankan.. tapi ramai yang taktau atau tak diberitahu pasal long term effect pada anak kita.. saya cuma nak share sebab ilmu Allah ni luas dan saya rasa bertanggungjawab untuk berkongsi apa ilmu dan fakta yang saya dah come across.. ni semua saya copy from various websites.. you can do your own research.. ape yang saya kumpulkan ni is actually my own reference untuk aisy.. i try to highlight mana yang important to know if it is too long for u to read.. so please have a read to know more..demi anak kita..


1) Long-term outcomes

During and after cancer treatment, the main concerns for most families are the short- and long-term effects of the cancer and its treatment, and concerns about the cancer still being present or coming back.

It is certainly normal for families to want to put the cancer and its treatment behind them and to get back to a life that doesn’t revolve around the cancer. But it’s important to realise that close follow-up care is a central part of this process that offers children the best chance for recovery and long-term survival.

For many years after treatment, it is very important that children have regular follow-up exams with the cancer care team. As time goes by, the risk of the cancer coming back goes down, and doctor visits might be needed less often. But they are still important because SOME SIDE EFFECTS OF TREATMENT MIGHT NOT SHOW UP UNTIL YEARS LATER.

Because of major advances in treatment, more children treated for cancer are now surviving into adulthood. DOCTORS HAVE LEARNED THAT THE TREATMENT MAY AFFECT CHILDREN’S HEALTH LATER IN LIFE, so watching for health effects as they get older has become more of a concern in recent years.

Treating childhood cancer requires a much specialised approach, and so does the care and follow-up after treatment. The earlier any problems can be recognised, the more likely it is they can be treated effectively.

Childhood cancer survivors are at risk, to some degree, for several possible late effects of their cancer treatment. It’s important to discuss what these possible effects might be with your child’s medical team. The risks depend on a number of factors, such as the type of cancer, the specific cancer treatments used, doses of cancer treatment, and the child’s age at the time of treatment. Some of the MORE COMMON LATE EFFECTS OF CANCER TREATMENT INCLUDE:

- HEART OR LUNG PROBLEMS (due to certain chemotherapy drugs or radiation therapy)

- SLOWED OR DELAYED GROWTH AND DEVELOPMENT (in the bones or overall)

- CHANGES IN SEXUAL DEVELOPMENT AND ABILITY TO HAVE CHILDREN

- LEARNING PROBLEMS

- INCREASED RISK OF OTHER CANCERS LATER IN LIFE


2) What causes late effects?

Late effects are CAUSED BY THE DAMAGE THAT CANCER TREATMENT DOES TO HEALTHY CELLS IN THE BODY. Most late effects are CAUSED BY CHEMOTHERAPY OR RADIATION. Major surgery can also lead to late effects.

Cancer treatments like radiation therapy or chemotherapy kill cells that grow quickly, such as cancer cells. But in a child, many healthy cells in organs throughout the body are growing fast, too. Treatment can damage these cells and keep them from growing and developing the way they should. Sometimes the damage from treatment isn’t serious enough to cause problems that are noticed right away, but they may show up over time.

Survival by Children’s Oncology Group risk group

Low-risk group: Children in the low-risk group have a 5-year survival rate that is higher than 95%.

Intermediate-risk group: In children in the intermediate-risk group, the 5-year survival rate is around 90% to 95%.

High-risk group: The 5-year survival rate in children in the high-risk group is around 40% to 50%. (We were told Aisy was in this group)

The overall 5 year survival rate for childhood cancer is 80%.  That is awesome.  But SURVIVAL COMES WITH A COST.  OVER 2/3 OF THOSE SURVIVORS HAVE AT LEAST ONE SERIOUS CHRONIC HEALTH CONDITION.  1/4 of those survivors face a late-effect from treatment that is CLASSIFIED AS SEVERE OR LIFE-THREATENING.

 

3) Incidence Childhood Cancer (globally)




)

 

160,000 new cases/year < 15 years of age. 

90,000 deaths/year < 15 years of age

 

(Ferlay J, IARC Cancer Base N°5, 2004)

 

4)
Although chemotherapy can be very effective, the success rate varies and in certain cancers can be as low as one per cent!

"A survey of 128 US cancer doctors found that if they contracted cancer, more than 80 per cent would NOT have chemotherapy"  

A survey of 128 US cancer doctors found that if they contracted cancer, more than 80 per cent would not have chemotherapy as the "risks and side effects far outweighed the likely benefits". 


You have to work out what´s best for you and your type and grade of cancer.


4) A review of chemotherapy on 5-year survival rates in Australia garnered almost identical results, with a 2.3 PERCENT SUCCESS RATE, compared to the U.S. 2.1 PERCENT RATE OF SUCCESS. 2% only?

(NaturalNews) Chemotherapy is one of three main treatment protocols of conventional medicine, one which millions of people worldwide have been put through. In fact, virtually all of us know someone who suffered and finally passed on after a futile course of chemotherapy prescribed by his or her doctor. 'Nothing more could be done anyway', we are often told. Lately, a recent study in Britain has raised serious questions about chemotherapy, in particular the role it plays in hastening and even causing the death of late-stage cancer sufferers.

Details and Findings of Study

The study had been carried out by the National Confidential Enquiry into Patient Outcome and Deaths in Britain, whose members are mostly taken from British medical royal colleges. It had looked at the cases of 600 cancer sufferers in the country who had passed on within 30 days of treatment. The majority of the said patients had already been declared "incurable" by doctors, and had been put on chemotherapy for palliative purposes.

And the study found that 
ABOUT 1 IN EVERY 4 OF SUCH DEATHS HAD EITHER BEEN SPED UP OR EVEN CAUSEDBY CHEMOTHERAPY. The study's findings also included the discovery that 2 OUT OF EVERY 5 OF THE PATIENTS HAD SUFFERED SIGNIFICANT POISONING FROM THE TREATMENT.

Learn more:
http://www.naturalnews.com/025499_cancer_chemotherapy_treatment.html#ixzz2xuR0sR4g

 

I’m sure some of the doctors who comes across this post of mine would flip.. but these facts are done with research on them.. there are some things they try to avoid telling patients because they do not want patients to worry more than they already have.. but we as parents of the patients, need to know the whole truth before we decide something or some kind of treatment for our children.. we deserve to know more.. it is our right to know from A-Z what the treatment can and will do to a person.. life is a precious thing and no one deserves to live more than another..


Wednesday, 27 November 2013

Rendang Tak Berbuah..

Pernah dengar tak lagu Hattan, Rendang tak berbuah?

Lirik dia macam kat bawah ni..

 

Sunyi dan gelap

Terlantar dalam telanjang

Di pintu rindu

Hidup dan matiku disisiku

 

Sakit yang datang

Menguji kasih dan sayang

Antara merenda semalam

Mungkin takkan berbuah

 

Hanya memenuhkan

Namun tidak mengenyangkan

Musafir lalu nan dahaga

Di jalan panas membara

 

Begitulah hakikatnya

Di mahligai kesakitan

Yang mengundang sahabat

Saudara jauh dekat

Menghembus nafas pilu

 

Ibu mengertilah

Aku sengsara

Lemas berendam airmata

Rendang kasihmu

Dalam gelora

Jadi rebutan selamanya

 

Berikanlah pengertian

Waktuku di hujung jalan

Berbicara bahasa tuhan

Yang penuh penyesalan

 

Manapun aku berlabuh

Pastinya untuk desamu

Biarpun tak bersubur

Biarlah tak tertangguh

Di telapak kakimu

Sakit kurasakan

Jadi peneman

Masa semalam yang silam..

 

Wanna know why I’m sharing this song? Lagu ni dari apa yang i tau, pasal orang yang sakit..tapi dia takleh nak meluahkan..lagi2 pada ibu dia.. dia nak bagitau derita dia.. tapi dia tak dapat...

Sebab tuh tiap2 kali Aisy buat chemotherapy or kena buat surgery.. watching him struggle through to survive.. mesti i teringat lagu ni.. sebab Aisy takleh cakap dia rasa sakit.. pedih.. pening .. he is still a baby.. my small little baby.. yang tak sepatutnya go through semua benda macam nie pun.. tapi Allah dah tentukan dia macam ni.. tapi i sebagai ibu dia..sedih.. sebab tak dapat nak share derita dia..apa yang dia rasa.. itu yang buat i terkilan..bila tengok dia mengamuk..menangis.. merengek.. i cuma boleh tanya, kenapa ni sayang..? tapi i tau i takkan dapat jawapan.. so bila terdengar lagu ni.. is aisy trying to tell me dia sakit? Dia derita? Dia sengsara ke?Ya Allah.. berikanlah aku kekuatan.. berikanlah anak aku kesihatan... berikanlah kami kebahgiaan bersama..



Tuesday, 26 November 2013

Follow-up appointment or Follow-up disappointment?

20th November 2013.. was six days ago.. Aisy ade appointment dengan oncology clinic dekat institute pediatrik.. as i mention before dalam recent post, appointment ni is to discuss aisy punya ct scan and future plans..

So we arrived kat IP around 9.00a.m. hubby dropped me n aisy while dia gi carik parking.. so i went to the klinik pakar area.. hamik number, registered.. bayor rm5..and letak aisy punya nombor giliran in the box pintu nombor 6.. that is the oncology clinic.. ramai pagi tuh.. as usual.. bila tengok sekeliling.. kesian budak2 ni.. macam2 penyakit, macam2 rasa sakit.. but still they are determined to live happily.. so we as parents, will have to do our best to provide and give the best for our children kan... haihhh.. sayu hati..

So hubby pun sampai..dah dapat parking..mesti double parking.. biaselah kat IP susah sangat nak carik parking..huhu.. so neways..tunggu turn while aisy mingle dengan budak2 kat situ.. dia belai2 kepala budak ni..pegang2 muka orang tuh..hehehehe ..friendly as usual..


After awhile..tak lama sangat pun.. Doctor panggil kitaorg masuk.. so first of all.. doctor tanya aisy’s condition.. after explaining that he is doing well.. she asked to bukak kasut n socks aisy.. she checked his kaki.. ketuk lutut n check reflex.. all the things to check his saraf pinggang ke bawah is working well.. so far Alhamdulillah, all is well for now doctor said..

So.. next..doctor explained.. “okay.. so apparently tumour dia masih ade lagi dekat spine dia according to the CT scan, as you can see here”, doctor tunjuk CT scan film to us.. from the film, it shows thatade tumour around his spine and inside his spine.. dekat L4 and L5.. hmmm.. okay.. actually it is expected.. so hubby and i macam tak surprise..altho we always pray for a miracle la kan..

Oh by the way.. hubby and I also bring aisy to rawatan Islam sementara tunggu results CT scan ni.. kena ikhtiar la kan.. so anyway, doctor cakap diaorg nak refer aisy to neurosurgeon.. neurosurgeon??? Biar betul?? Operate again? Hmm.. i told the doctor.. “hmm..doctor..if nak operate lagi.. husband and i taknak kot..after what aisy kena go thru after major surgery last august.. X sanggup.. Especially spine pulak tuh”... doctor Cuma senyum je bila i ckp camtuh.. then she said takpe, kita takkan buat without your consent.. so the plan is to continue four cycles of chemo, surgery tuh depends on what the neurosurgeon says, whether boleh buat or tak.. because the spine, of course, is one of the most dangerous parts to operate on kan..but if chemo takleh get rid of the cancer cells.. then maybe tambah two more cycles...

“So ada beza ke chemo yang baru ni compared to the one yang aisy pernah buat?”I asked...Doctor replied, “Yes, actually this time the chemo will be stronger.. dulu carboplatin and etoposide jer.. since cancer to tak response the chemo.. kita buat yang baru ni which is going to be combination of three different drugs yang lagi kuat.. andinstead of tiga hari berturut2..its going to be LIMA hari berturut2..”.

Wow...seriously?? dalam hati n pale otak ni dah macam2 dah fikir.. what will happen to him kalau buat chemo tuh? Is he going to be okay? Now that he is bigger, mesti side effects lagi teruk..? kalau badan dia takleh cope up with the strength of the chemo camne? Will it be the end of everything? Tapi mcm mane kalau chemo yg kuat ni pun takleh bagi effect ape2 pun kat cancer cell dia, what then? Tambah lagi drugs? Tukar lagi drugs? Sampai bila? Pastu anak aku jadi apa? Ya Allah.. Kau berikanlah hidayah dan petunjukMu supaya kami dapat membuat keputusan yang terbaik untuk Aisy Ezkandar..

While doctor is writing down some notes and forms for us.. to arrange appointment for the next visit at the onco clinic, buat ultrasound and appointment with surgeon.. i asked..

”Honestly doctor, can u give me a truthful statistics on the survival rate for neuroblastoma (NB) cases?... i mean, dekat IP ni, brape orang since the first case yang survive sebenarnya?”

She looked at me with sympathy and said.. “hmm......honestly.. sorang dua jer......................................this is because bila patient dah cancer-free after treatment, the cancer relapse.. NB in majority cases memang relapse.. cancer tuh datang balik..and usually when it relapse................................chances tuh... hmmm.... susah sikit lah....”. this was what the doctor said to me..

“So kalau stage 4s macam mane doctor? (readers, stage 4s is the safest stage for NB, u can google this or tgk my post awal2 dulu)... Doctor explained,” Usually kita bagi fiver-year survival rate.. so maksudnya.. kalau ade 10 orang yang kena NB stage 4s, by the time diaorg reach umur lima tahun.. about 6 orang yg akan survive, which means survival rate is 60% for stage 4s..mengikut statistics lah..”...

“Ohh.. itu untuk 4s kan.. so what about stage 3 or 4 nih?”, I asked...

.................................................................. (Doctor just smiled)...................

Hmmm...okay... doctor pun tak sampai hati nak cakap sebenarnya.. its ok.. i understand..

So okay, we will arrange the appointment with the neurosurgeon doctor kata, eventho kita taknak surgery tapi apa salahnyer dengar the surgeon explain the situation kan.. so lepas dah selesai semua explanation and paperwork.. doctor asked to book date for ultrasound in January, flush chemoport and amik darah kat unit rawatan harian.. okay.. so kitaorg pun thank the doctor for being nice and patient with us.. hehehe .. we went to book the date.. 2ndJanuary 2014.. for ultrasound.. then gi flush port and amik darah, Alhamdulillah all went well.. cuak jugak sebab aisy baru tukar port baru kan.. so after all that.. kita pun pulang lah.. so for now, we will continue the rawatan Islam... and wait for the call to confirm the date to meet the neurosurgeon..

Buat sementara waktu ni.. Kena cuba sedaya upaya to prepare myself for the worse.. and always pray for the best... Allah knows best..