Welcome to the forum ksc although I'm really sorry to read about your son's diagnosis and for the reason you are posting.

As we are a UK based forum we don't have many people posting from Singapore but we do have a page on our website where you can search for cancer organisations and charities in your country which may help you to connect with others where you are based. To find out more, just click here.

Despite not having many members here being from Singapore we do have two members - [@tessam]‍ and [@LindaLever]‍ - who have family members with the same diagnosis as your son that may be able to help and hopefully they will pop by when they can to share their experiences with you now I've tagged them in this post.

In regards to TCM, only your son's medical team will be able to advise on whether this will be suitable so do make sure you discuss this with them at your next meeting.

I hope this helps ksc and I wish you both well at this difficult time.

Kind regards, 

Steph, Cancer Chat Moderator

Hi Ksc, 

I am from Singapore and my son 8 was diagnosed with stage 1b of mf. 

As this is a skin disease, i would suggest you to check in with national skin centre in Singapore, the dermatologist there will advise what you should do. 

As for TCM, I don’t use it as i believe TCM is a slow treatment process. If MF is in remission, you can use tcm to prevent it from reoccurring. 

All the best. 

Dear Hui, Thank you very much for your response to my doubt. My son is at later stage. I have message you and hope to hear from you soon. Thank you. 

Dear Steph,

Thank you very much for your advise. 

I have finally received a reply of similar case from Singapore. 

I really there'll be an effective way to treat MF in near future and find the root cause of it. 

Hello KSC

CTCL Mycosis Fungoides is exquisitely radiosensitive - this means that MF patches, plaques and tumours respond very quickly to controlled doses of X-rays.  Tumours are NOT surgically removed - controlled and targeted radiation is much safer.

Has your son been formally staged, with a bone marrow biopsy, and maybe a PET scan?

Is it Mycosis Fungoides, or is it the more serious Follicular Mycosis Fungoides?

Hui said that this is a "skin disease", but really it's a blood cancer, and, a cancer of the immune system - that happens to manifest itself in the skin.  The T-cells that reside in the skin profliferate, and don't die.

Have you seen a haemo-oncologist at a large public hospital?  Haemotologists are usually the best medical specialists to deal with MF.   Some dermatologists know about MF, but not all of them.

Some dermatologists have UV light chambers, and UVB light can be very effective on MF patches and plaques.

I hope you son has not progressed any further.

Dear Mori,

Thank you for your sharing.

I am not sure if its only mycosis fungoides and I didn't know what is follicular MF. Staging/PET scan/bone marrow test/ removal of limb nodes done. 

Unfortunately, the radiotherapy didn't really make the tumour shrink a lot after 2.5mths from radiation and need more observation. From latest MRI the whole patch of the tumor is still there and it can't tell if there's any active cells or not.

I just can't stop blaming my stupidity to trust the team of doctors from our government hospital who acted professional misconduct with their over promising results based on the past history of treating MF & caused us missed the boat for the surgery. They said MF is very radiosensitive and it might disappear or subside itself. See what is happening now?! How can they do such thing to a young patient when he originally got 2 options but they told us surgery is not an option and not the first line option? Provide horror remarks about surgery which caused us suspect our surgeon expertise. Their verbal promising result was increased from 80% to 95% when we informed them that we didn't want radiotherapy.  

There's only 1 tumour and they keep persuading us from surgery. It's very rare in Singapore and now it's proven radiotherapy didn't really work effectively for everyone and slapped on their so called right treatment for MF. Now we can only observe and see.  Or may be more dose in future. My heart is bleeding...No words can describe our inner suffer & pain......

Dear KSC

I am sorry that you are suffering, and that the radiotherapy has only made your son's tumour shrink a little bit.

Do not blame yourself, because radiotherapy is usually one of the best treatments for cutaneous lymphoma tumours.

Surgery might remove the immediate problem of the tumour, but surgery will not cure mycosis fungoides in your son.  His DNA has been changed or damaged, so that even after surgery new tumours could still appear.  Have your son's doctors explained that to you?

I am glad that your son has had a PET scan, and a bone marrow biopsy.  These are very important tests that have staged your son's disease.  The tests show that your son's doctors are taking the disease very seriously.   Do you know what stage they have decided your son is at?

I am not a doctor, but I know a man in Sydney who had a mycosis fungoides tumour on his face (stage IIB), and he was treated very effectively with something called interferon therapy.  This does not work for everybody though.  Can you ask the doctors about this?  

You mentioned that there may be more doses of radiotherapy in future.  This sort of radiotherapy is very specialised, and the dose of radiotherapy has to be at just the right level.  

Singapore has about 5 million people.  Australia has 25 million people.  I live on the west coast of Australia, but the centre of excellence for treating cutaneous lymphoma mycosis fungoides in Australia is the Peter McCallum Cancer Centre in Melbourne, Victoria.

The website for the Peter McCallum Cancer Centre is https://www.petermac.org/ .  Professor Miles Prince works at Peter McCallum, and he is an acknowledged expert on treating mycosis fungoides.  Can you ask your son's doctors if they can collaborate with the staff at Peter MacCullum?  

I hope this helps KSC.

Regards - Mori

Dear Mori,

Thanks again for your sharing. I'll read  & find out more from our doctors here. He's at stage IIB.

Over promising results & talked about other doctor's profession are the wrong things done to us. Patient and caregiver rely very much on the doctors to provide adequate information and treatment options. I know surgery is not the cure but to get rid of the key problem first is more important rather than keep it as the time bomb. We still can treat the rest accordingly.

It's a fruitful chat with you. Thank you very much...

I you are still out there don't underestimate mycosis fungoidis.i nearly lost my life to it when a tumour on my finger became infected leading to the removal of the finger.it isn't a skin disease like psoriasis or ezecma are but a blood cancer which manifests on the skin and looks like them.it has destroyed my left thumb too and it will have radiation treatment on a tumour on it in 2 weeks.im guessing that I must be stage 2b as I have tumours over 1cm although one doctor said 2a but the information doesn't show tumours at that stage.i think that a lot of the information on it is based on the 1a stage and apparently some people don't progress beyond this.i was misdiagnosed as having ezecma and then psoriasis during the 1a and 1b stages and then the tumours appeared.i think that it must be regarded as, beyond 1a well that too as it has the potential to become worse,as a life threatening illness.another problem is mycosis fungoidis is compromising the immune system and bad psoriasis is treated with immune suppression drugs like acetretin now you can see the problem with misdiagnosis there!