Hello, I am sorry to hear that. I had not heard of the drug you mentioned so I went to search it online. If this drug is used to treat primarily only liver cancer, try to ask your doctor to ask if any of his/her patients need the drug at a lower price? Not sure if it is legal to resell the drug but there might be some people who need it but could not afford it at its normal price. All the best to you and your family.

how's your mom?

Thank you for your concern. My mum was already ok after a few months of treatments (chemo + radio) previously, all her cancerous tumours were gone. Now, she only has to go back to hospital for follow-up medical check-ups regularly.

great.... does she have extremely dry mouth now?

some side effects remained after the treatment. she never complained about dry mouth. what bother her the most are the weaker sense of taste and weaker hearing (ringing in her ears) but she has got used to all the side effects now.

yeah... the 'weaker' taste is due to dry mouth... some ppl improved after couple of years... some will have permanent dry mouth....

Hello, very happy to hear your mom has recovered. My mom just diagnosed with stage 3 nasal cancer which spread to lymph nodes last Wed. We have consulted a few doctors in Beacon and SJMC and they have different opinion in terms of treatment plan. May I know what was your mom treatment plan. Was it just radiation and concurrent chemotherapy only? I am kind of confused.

And which form of radiation did you choose? I know there is 3D conformal which is a very old technology with many side effect, Trubeam (IMRT) and Tomotherapy (IMRT).. These are all available in SJMC and also the Institut Kanser Negara (IKN). Our SJMC doctor did help us to refer to IKN which has the tomotherapy machine. They gave us an appointment date is 8 May 18. '

I want to know how long was the gap between your mom diagnosis and start of treatment? Obviously I want her to start treatment asap but if IKN I can choose the best treatment at the affordable cost. The Tomo machine at SJMC alone cost RM42K + RM15K for chemo, which is too heavy burden. So I am very divided whether I should wait for IKN or just go ahead at SJMC.

I would be grateful for any experience sharing.

hello, my dad just did had his surgery for colon cancer few months back and he now has a permanent stoma.

anyone has any experience with this? stoma bags are pretty expensive too, wonder if anyone knows where's a good place to purchase at a reasonable price. thanks!

Sorry for the late reply and sorry to hear that. Your mum's situation is quite similar to my mum last time, stage 3 and spread to both sides of lymph nodes in her neck (3 lumps if not mistaken). We also went to Beacon and SJMC, and yes both of the hospitals are very expensive. The doctors in SJMC and Columbia Asia were kind enough to write referral letters to refer us to IKN as we did not have the money for treatments. I personally think that IKN is ok as they specialise in treating cancers only if you cannot afford the treatment in the private hospitals. My mum did chemotherapy first then radiotherapy (all in IKN) because the doctor said that her tumor was too big to start with radiotherapy. I have no idea what kind of radiation it was though. The diagnosis and scanning of her full body to check if the cancer had spread to other parts of her body took about two weeks, then about another two weeks only she started her treatment. What I can tell you now is prepare for the side effects your mum may experience during and after the treatments because the treatments will not be easy on the patients although each person will have different experiences. Ask me anything that you need to know. Check your inbox for my phone number and you may contact me through whatsapp if you really need quick reply.

This post has been edited by Guitary: May 7 2018, 03:37 AM

Nice.
Good luck in the future check ups.


This post has been edited by Lim Ling Yang: May 8 2018, 10:31 PM

Glad to see your mum are recovering so well. It's such a joy to see that.

Hope other more people can share their stories, how they recover from cancer? or what lifestyle they change after they know they have cancer?

how is your dad now?