Topic: Radiotherapy effective?

Hello all,

This site is wonderful and I'd really appreciate any help. My mum's just been diagnosed with intrahepatic cholangiocarcinoma that we've been told is inoperable. We've also been told that radiotherapy isn't effective for this type of tumour, yet I've read about people here and elsewhere getting radiotherapy? I don't understand why radiotherapy isn't an option, when it could maybe shrink the tumour so it could be operated on.

I'm desperate to find some treatment for my mum. At the moment it seems the doctors aren't even very positive that she'll be able to have chemotherapy.

Thanks very much for any help.

Re: Radiotherapy effective?

Hi Elizabeth,

Welcome.  You have come to the right place for help & support.  This is a great site and a wonderful group of people all who have been touched in one way or another by this awful cancer. 

I can only tell you what I have learned from my experiences.  In my husbands case, his first symptoms and ultimate diagnosis came at a point when the cancer had already invaded most of his bile ducts.  He also was intrahepatic and was inoperable.  They only thing they were considering was some type of pallative chemo that ultimately was not possible because his condition deteriorated so quickly that his body was no longer physically in any condition to undergo any type of treatment.

That was our situation.  Others have done much better.  Everyone's cancer and situation are different and what does or does not work for one may be the opposite for the next person.  I guess her condition and the progression of the disease will be the deciding factor in treatment. 

At this point I would suggest getting other opinions as soon as possible  and then make your decisions based on what you learn and what your Mum feels is best for her. 

There are several people on board from the UK and I am sure you will be hearing from some of them shortly.  They may have some suggestions as to where to go or what to do next.

This disease is so very unpredictable and does not play fair, so whatever you do I would do it as soon as possible.

I am glad that you found us but sorry you have a need to be here.  I will be hoping for the best for your Mum and you.  Please stay in touch and know that everyone here is more than willing to be here for you with advice, comfort, support and even just to lend an ear when you need to vent your feelings. 

Take Care,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Radiotherapy effective?

Elizabeth... as Darla has mentioned we have several other members from the UK.  Where is your Mom residing? 
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Radiotherapy effective?

Hello Elizabeth,

Welcome to the site, although I am sorry that you have to be here. As Darla said to you, this is a great place for help, support and indeed everything else.

From what you have said about your mums diagnosis, it sounds quite similar to my dad's. He was diagnosed last year and we were told his CC was inoperable due to the location of the tumour and that radiation treatment would also not be an option. His doctor was also not keen on going for chemo. My dad had a stent inserted which helped relieve the jaundice followed by photodynamic therapy, PDT a few weeks later. If you use the search function and type in my name or PDT, you can look for some of my posts that go into a bit more detail about my dads treatment to date.

Perhaps talking to your mums specialist about this type of treatment may be an option for your mum. I also agree with Darla re getting other opinions as soon as you can regarding everything to do with all of this. My dad was diagnosed and treated at Ninewells in Dundee.

I'm sure others will be along soon with more support and information, but if you have any questions then just ask away.

I wish you all the very best.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Radiotherapy effective?

Hi Elizabeth

My mum was diagnosed April, and her CC is also not operable nor radiation possible.  We even pursued microwave ablation for her (being done at Leicester and Bath Hospitals for mainly liver cancers) but because of the siting of the cancer in the bile duct, close to main hepatic arteries the consultant said it is too dangerous a procedure for CC patients.

Gavin's dad seems to have had great success with PDT which is just great, but again, it seems this is only offered at major specialist centres and not offered to my mum who is cared for by 'quiet backwater' NHS trust. 

The doctors have discussed statistics about chemo and the upshot is that they don't think my mum will necessarily benefit from chemo.  However, she visited Park Attwood Clinic today (www.parkattwood.org) and is seriously considering Mistletoe treatment.  For her, they have suggested an intensive treatment of injections over 10 days where they will induce fever like symptoms 3 times to stimulate her own immunity which in turn will 'fight' the CC. They said she will spend 3 days out of the 10 feeling really rotten (ie, like real flu with shivers, etc) but seem to think she will tolerate it well (even though she is v. v. weak at the moment) and can stop it at any time.  Her oncologist had not heard of other CC patients using this therapy - but was keen for her to try if she is willing.  This treatment also seems to be less invasive than chemo and from what I've read has a better chance of making her feel better/stronger afterwards.  They have said it is not a cure but will improve her quality of life..... and who knows if it will extend it?  So my mum is making the decision now about whether to proceed - the initial cost for 10 days treatment is around

Re: Radiotherapy effective?

Wendy....I am not aware of a patient registry.  I believe, the larger cancer centers in the US (and possibly, in other countries) are compiling the information regarding this cancer.  They do though have to follow the rules of the HIPA code.  It is very difficult to transfer information without infringing on the right of the patient at least; this is the case in this country.  Is this similar to the UK?
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Radiotherapy effective?

Hi Marion,
Yes, the ethical protocols are similar in both Europe and US.  We are looking to set our registry up in Europe first and then roll out to other countries and I know that legal/governance and ethical requirements are almost identical between US/Europe/Australia so it should roll out quite smoothly.
The patient registry we are setting up (I am cofounder of the charity organising this) is a self-reported registry.  It was felt that, for a number of reasons, it was better for us to collate information this way - largely because it is patient-initiated and therefore more straightforward.  We have been working with a registry co-ordinator (in other words a highly regarded researcher and clinician in the field of congenital neuromuscular disease) to establish the content of our registry, and we have been collaborating with his global peers to decide on the type of information that will be useful to help further research. Any contact between researcher and patient will be managed by a registry curator to protect patient identify and patient always has full control of data (managing it themselves online). The data we collect will (with full patient consent) be anonymised and passed onto interested researchers (after they have obtained research ethical approval) and be used to identify patients suitable for certain clinical trials (when they become available for our condition). The registy is governed by a steering committee (scientific advisory board) and other legal committees. The registry will help identify the prevalence of the condition and help to provide standards of care. We are hoping to include a function where researchers can design their own further questionnaire to send out to selected patients to help with their research.  For our condition there are only a handful of molecular diagnostic testing centres globally, mainly based in europe, so there are some clinical databases in existence but these do not hold full or necessarily up to date information.   We are arranging to harmonize our self-reported registry with these genetic databases (with patient consent).  Preparing the patient registry has, I admit been a huge and quite complicated process, and has involved the input of several researchers to define what type of information is required and is useful for their research, but we hope to launch later this year in Europe and then roll out to other countries with the help of curators (ie interested research academics/legal institutions) in those countries.     How the registry works is: the patients (or their representatives/guardians) will register themselves online (or offline) with personal data and then answer some 20 mandatory and some further highly encouraged questions. They will then sign a consent form requesting genetic information and some medical information to be released from their clinician which will be sent directly to the registry curator who will include this information on the registry.  Once this information is received the data becomes 'live' and can be used for research or identifying patients for clinical trials. The patient/representative will be encouraged to update information annually through reminders, and equally any new information about the condition (such as standards of care) will be fed back to the patient. (The patient registry has to have a benefit for the patient). Due to the high morbidity of our particular condition, we are encouraging information from both deceased and living patients. If you are interested further, then let me know and I will pass on more info, and be pleased to share our experience of setting up a registry.  We decided to do this ourselves and as the only supporting charity for the disease, to accelerate the pace of research and treatment into the disease which, as a rarer condition, has no public funding invested in it.  Also because it is a patient led registry, it makes more sense that it comes from the charity.  I guess this could work similarly well for CC - the condition which my mother suffers from.   Please email me privately if you wish to have any further info or look in the research section of our own website (which is the process of being redesigned!)...www.myotubulartrust.org
Best wishes
Wendy
wendyhughes@myotubulartrust.org

Re: Radiotherapy effective?

Hello all,

Thank you very much for your helpful replies. I'm so sorry that we all have to be here fighting this dreadful disease.

Unfortunately, my wonderful mum passed away on Thursday. She'd been told she had a few more months, but the cancer got her much more quickly than expected. Our family and her friends are devastated, especially by the suddenness of it all.

Thanks again,
Elizabeth

Re: Radiotherapy effective?

Dear Elizabeth, our heartfelt sympathies go out to you. Your mum is now at peace and perhaps it was a better thing that her passing happened the way it did. She passed when she was ready, with dignity and knowing she was so very loved. Our prayers go out to you and  your family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Radiotherapy effective?

Dearest Elizabeth.....This is a rotten cancer and many times takes from us swiftly, our loved ones.  I am sending warm hugs to you and wish for your heart to heal....one day at a time.  Only time will heal your pain and will allow you to embrace those memories so cherished by you.
All my love is coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Radiotherapy effective?

Dear Elizabeth,

You  have my greatest sympathy.   I am so sorry you are having to  go through all of this.  I know too well how hard it is, especially when it goes this quickly.   It just blindsides you.   Before you can  even  adjust to what is going on it is all over.  We  just have  to be glad  that our loved  ones  did not have to fight & suffer  from  this awful disease  for very long. Your Mum  no longer has to endure the pain & suffering.  She is at peace and will be with you forever in your heart & memories. My  thoughts and prayers are with you & your family.  Take care Elizabeth  and know  that we are all here to help and support  you as you grieve.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Radiotherapy effective?

Dear Elizabeth, I too am so sorry for your loss. My heart breaks for you, in both your loss and the suddenness of it all. I'm just really sorry for what you must be going through, it is a very difficult time.

You're in my thoughts.

Tess

Re: Radiotherapy effective?

To dear Elizabeth,
I'm so so deeply sorry too to hear about your mum.  You must be feeling shocked and devastated.  I hope you have the love and warmth of all your family and friends around you right now to comfort you. You are in our thoughts.
Wendy

Re: Radiotherapy effective?

Is there a drug on the market called "sirtex.
Very effective, and not from side effects if not a bit of fever.
From a life expectancy of at least two years.
Locally affects the tumor without affecting other organs, only the tumor cells.

http://www.sirtex.com/ (New Window)