Hello everyone – I’m new here
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Hi Gavin, thanks for all of this helpful information, and for providing all the detail about PDT. I guess nothing is as bad when you know what to expect. I will pass this information on at the appropriate time to my mum.
I wish you all the best too and I’m pleased that your dad is doing so well and living his life to the full, and it seems, managing the condition well. I don’t think I appreciate quite how debilitating the jaundice is, and I’m desperately hoping my mum will bounce back when she’s over this and it’s managed with the new stent.
My mum has just been introduced to the macmillan nurses, who I have every confidence will be another pillar of support for her and my dad.
I have been strangely comforted to read several accounts on this website which suggest that cc itself rarely causes much pain even right up to the end stages.
I’m sorry about your parents ongoing house troubles, having been through something similar with flood damage, I empathise with them about the huge inconvenience this causes when you have to move out- water can cause so much damage but hope that it all gets resolved quickly and they can soon enjoy a new kitchen and bathroom in a nice and newly decorated home. It’s a real annoyance isn’t it, especially when you have so much else to bear, but hopefully they can see an end to this in sight which will allow them to just get on with their lives and focussing on being positive.
Do take care,
WendyHi Wendy,
It’s good to hear from you again. I’m glad that found everyone’s advice helpful. Everyone here is really friendly and helpful so please dont be afriad to ask any questions. I guess the only stupid question is the one that isnt asked!
Considering everything that is happening, my mum and dads mood is sort of mixed I guess. The building work was due to start this week but has been delayed due to further damage appearing in the ouitside wall in their block of flats which will affect the work needed to be done in their flat. They will probably have to move out of their flat into a hotel while the work is carried out due to the kitchen and bathroom having to be totally ripped out and replaced. The walls will alos need to be dried out with de-humidifiers for a few days even before it can be replastered. They will not be able to cope with all the dust due to their illnesses so need to move out. They cant come to mine to stay as I live 3 floors up and they cant manage the stairs. All in all, this is turning into a complete nightmare! But all we can do right now is get on with it.
Dads mood is pretty good. Yesterday I took him up to day care at the local Macmillan centre, he now goes there every Tuesday for the day and he loves it! He gets tea and toast as soon as he gets there and a 3 course dinner so he’s pleased! It sort of like a group where cancer patients go for the day for activities and to meet others in the same situation. They can get all sorts of stuff like reflexology, reikie sessions, arts and crafts and games, yesterday they were all playing scrabble and dad got another reflexology session, he loves that. It is staffed with specialist nurses and volunteers and is very informal. He also got a blood test done and they will be in touch if need be today.
Has your mum been offered the services of a Macmillan nurse yet? My dad was offered one when he was in hospital for the second time last year and she has been a god send to my parents. She comes to visit us when ever we want at home and is extremely helpful in so many ways, not only for medical matters but for other situations that might arise over time.
Thanks for the link you gave on the microwave treatment, it looks really interesting and hopefull for those who undertake it. Radiation treatment was ruled out along with surgery for my dad due to the location of his tumour, so PDT was offered.
As to the PDT, my dad never asked how long it would extent his life for. I dont think he really wanted to ask that question but I can understand why you want to know that. My dads attitude was that his specialist recommend the treatment so he wanted to go for it straight away. You say it sounds like a tough therapy to endure, but I guess when I compare what my dad went through to what I read here from people who have had chemo, it doesnt sound so bad. The biggest fright my dad got was when he saw the size of the syringe that the Photofrin was in. Not only that, but there was 2 of them! He said he thought about jumping out of the window to escape when he saw them! But they were injected through the valve type thing he already had in the back of his hand so he said it was painless. This was done 48 hours before he underwent the laser treatment so that the Photofrin could spread through the body. Although the Photofrin spread throughout his whole body, most of it was to amass in the cancerous cells which were then zapped as it were with the laser. The laser procedure was done in the same way in which the stent was inserteted and was under some type of anaesthetic. My Dad was deemed suitable for this treatment as the laser was able to directly attack the tumour and would therefore not cause any other damage to the surrounding area. The procedure itself was painless and dad could not remember a thing.
The biggest side affect of the treatment was that his skin was extremely light sensitive for a few months afterwards. The rest of his time in the hospital was spent in his room with the blinds drawn and the lights off. It sounds bad when I put it like that, but it really wasnt as bad as it sounds. he had to stay away from direct sunlight at first hence the blinds being drawn and the lights kept off. When he came out his room for a shower, all the lights in the ward had to be switched off and the large blinds on the main windows also had to be drawn. Once he left the hospital, he had to keep pretty much all his skin covered when he went outside, really dark sunglasses, a wide brimmed hat and gloves. This went on for a while and eventually he could go out without the gloves, then the gloves and hat and eventually with no gloves, hat or glasses. Again, it probably sounds worse reading it than what it really is. He only found it a bit of a hassle remembering to cover up, but he got used to it. as I said before, anything specific you can think of to ask regarding this then ask away.
Tess and Lainy have, as always, given you some great advice and support. All I know about chemo is what I have read on this site from people who have and are undertaking it. I really hope your mum can get referred to a specialist this week so that you can investigate further treatment of some sort. I would imagine the results of your mums scans and stuff should be stored electronically so should be able to be transfered over the NHS intranet to whoever needs to see them quickly.
As to the calcium in your mums blood. If you use the search function on this site then you can see if others have experienced this and posted anything about it. Does your mum still have the itching with the jaundice?
As far as you and your mum wanting to get back into her garden, that is not a ridiculous thought at all. I agree with Tess, hope is never ridiculous. My mum and dad also enjoy sitting outside relaxing and enjoying the simple things in life when they can. I hope you can keep us up to date with all that is happening.
I wish you all the very best.
Gavin
Thank you Lainy, and thank you Tess
You are amazing – you don’t know me from ‘Adam’ and here you both are so generously giving me all this advise and support, giving me such a huge insight into the condition so quickly so I can help my mum and my dad. Its certainly giving me hope about what we can achieve for my mum.
It turns out my mum has too much calcium in her blood so they are questioning a problem with the para-thyroid and trying to bring the levels down. I don’t know/think it’s connected, but they may have to outrule any secondaries as I understand the tumour is in a place where there are a lot of veins and arteries which could mean it spreads into other parts of her body quite quickly.
Lainy – that’s certainly a good place to start, and we will take this on board.
Tess – you are an inspiration – these are things we hadn’t even considered (and probably not even known by my mum’s local acute team). I thank you for taking the time and trouble to write all this information in your post. I’m hoping that some of the information/images are electronically filed and can be forwarded to specialist colleagues through the NHS intranet, but it’s a great idea about the courier-ing if that speeds things up/or for paper format and I will bear that in mind. I know if she is transferred to the birmingham team they will want to redo everything as a baseline. However, we feel we are racing against time, so every shortcut and second counts doesn’t it.
Thank you both so much for this, I will keep you posted about how we get on.
Best wishes
WendyHi Wendy, I’m glad you had a chance to connect with Gavin, he has much experience to offer. Good to hear from you Gavin!
You keep your spirits up to Wendy, and remember to take care of yourself, the caregiver-daughter/son role can be very exhausting & gratifying on so many levels.
As an aside, for the dozen second opinions we found for Dad, none were referrals and there is often disagreement (even amongst the specialists) about potential treatment options. In our case, we had to go search out our own doctors & then Dad’s original oncology office sent his doctor records and CD imagery to these other specialists in FedEX overnight delivery packages, such that they could be tracked. It meant that the docs. could review all the records and let us know if they could perform any treatments outside of chemo, and that we didn’t have to travel to get these opinions. 10 out of 11 doctors said no to resection, and one said yes (if the tumor could be shrunk a bit via chemo & radiation). His oncologist said that resection was the only option for survival in Dad’s case (but everyone’s story unfolds differently), so we were shooting for the stars & desperately wanted it out. Mind you, they were willing to attempt resection on Dad, even with advanced stage 4 intraheptic cc. He was just about to start the radiation when he passed. He did tolerate the chemo (gemzar) quite well, as it effects everyone different. He was very tired, his appetite went down, at times he felt a slight bit nauseus, and his tastebuds were effected. But he was still able to go sit on the porch and enjoy the sun! Like your Mom, Dad had repeated problems with the stent (in his case it was a biliary catheter used to divert the bile), you have to stay on the doctors with any issues as soon as they arrise. Dad had his catheter changed out 3X in 4 months, and they couldn’t figure out why it would quit working, but each time they put a bigger one in. He also got an infection in his cath, which had to be treated asap. His had to be flushed daily. He too got very jaundice again when they’d start acting up, but the itching did not return. They do offer prescriptions to address the itching and a moderator on this board (Lainy) suggested SARNA cream, it’s over the counter, and that too seemed to help (it’s a US product, but I’m not sure if it’s available in the UK). I’m sure it is driving your poor Mom crazy.
It would be wonderful if your Mom could get back out into the garden again, even if was just for tea and relaxation…. hope is never ridiculous, it’s all we have & the small pleasures & moments count for so much in life!
Best to you Wendy,
Tess
Dear Wendy, you are truly at the very beginning and it is scary and frustrating.
If I may make a suggestion don’t settle. If you feel uncomfortable with the decision that is being made then gather the records and seek another opinion.
Remember we are our own best advocates and we can persevere until we are satisfied. I hope the new stent works wonders and that your mum is feeling much better in a day or two. Never feel you are asking too many questions of the doctors or of us, ask away. My biggest question to the Specialist would be
“will the chemo help?”. And what other alternatives are there? When you have 2 doctors who are both disagreeing as to treatment then go to a 3rd. Good luck to you and I too hope mum will be soon sitting in her garden enjoying the summer air!Hi Gavin,
Thanks for answering so quickly, and I hope this post finds your mum and dad, and yourself very well and in high spirits. And I really hope they managed to fix that wretched leaky tap – it’s amazing how annoying but ‘fixable’ things like this can really upset everyone when they are feeling at their most fragile.
I must say, we have found yours and Tess’ advice so helpful – especially in these early days when we are fumbling around in the dark trying to make sense of it all. To be quite honest, I’m still trying find out what questions to ask, but I have to say that I’m so grateful to have so much expertise on tap, especially for such a rare condition. ‘Thank you’ doesn’t seem good enough, as we are very grateful for your help and advice and hope we can offer the same to others one day soon.
The link about the microwave ablation in UK which I found last week while searching on the net is http://www.theengineer.co.uk/Articles/311291/Microwaved+liver+cancer.htm but if you google the words ‘microwave ablation cholangiocarcinoma’ you will get lots of information on it. We contacted the UK specialist (Mr Lloyd) based in Leicester Royal Infirmary yesterday, who was so nice and emailed us straight back today but sadly told us that ‘Unfortunately, bile duct cancers near the liver hilum are not suitable for microwave. The energy required to ablate the tumour would cause local destruction of important vessels (hepatic artery etc) and potential liver failure. These are very difficult tumours to treat and surgery should be considered
Hi Wendy,
Welcome to the site, although I am sorry that you have to be here. I’m glad that my post has been of some help to you during this stressful time. I know how you feel as I was feeling the same as you are now with my dad last year. In the space of a few weeks, my dad had been refered to the hospital because of the jaundice to being told he had inoperable CC. If you have any questions at all then please, ask away! Everyone will be more than happy to help if they can. This site has been great for me, so much information and support and has been a great help to me.
I dont know anything about the microwave ablation treatment you mention so thanks to Tess for the link and info on that. Im sorry to hear that from your last post you say that this treatment has been ruled out now. I hope you manage to get your mum seen by a specialist as soon as possible. Has your mum had the stent put in yet? My dad felt a lot better once he had his put in, he has a metal one. He suffered really badly from the jaundice, bad itching, yellow eyes etc and like Tess’s dad, once the stent started working he felt so much better. Im sure that once the docs get your mums jaundice sorted then she will feel a lot better.
As to the PDT treatment, ask away if you have any questions and I will help if I can. Have your mums doctors talked with you about types of treatment? Like a lot of other people, my dads CC was too advanced once it was noticed for surgery to be an option. The only symptoms that my dad seemed to be showing was the jaundice and the affects of that. I sure do wish that there were other symptoms that would have shown up at an earlier stage so that surgery might have been an option.
I can relate to how you and your dad are feeling right now having to deal with all of this. It seems like so much to have to deal with in one go and it isn’t easy. But it sounds to me as if you are doing a great job supporting your mum and dad in this fight.
I hope you will stay on the site, ask questions and keep us all up to date on what is happening. Like Tess said, starting a new thread may be a good idea also. Stay positive and I look forward to hearing more from you.
Wishing you and your family all the very best.
Gavin
Tess, I’m so sad and sorry to hear about your dad, you must miss him dreadfully and I’m so sorry for that.
Thanks for your kind words of support too.
On the one hand, I’m grateful that my mum has not had to endure years of suffering and worry before now, but just so shocked that this has all come about so quickly -it seems a horrible condition and creeps up so fast and quietly. I’m so very grateful for you taking the time to write back and your helpful and comforting advice…. I’m glad about the itching because that’s the one thing that seems to be bothering my mum at the moment, she seems to really enjoy ice cream and fruit right so the shakes are such a great idea. And I guess we have to find out what we’re dealing with first – she’s only just had results from CT/Endoscope which the team are going over again with a fine toothcomb to see if there are secondaries which we will know about later this week – so I suppose we need to get a second opinion from a specialist and find out what grade she has with a biopsy if we can. We’ve just heard that microwave ablation is out of the question because it’s too close to the hepatic artery. You have been like a shining star in a very dark night Tess and I thank you for responding so quickly. Your dad must’ve been so proud of you too and everything you did for him.
Thanks for the suggestion about the new thread too.
Best wishes
WendyI sure do know your concerns Wendy, it’s a rollercoaster ride for the whole family & you’re definitely not alone. One of the most important things I’ve learned from this site is that everyone responds differently to the cc, and to the various treatments, it is virutally impossible to predict the course of the cancer. Some people survive for years! My Dad was was not one of them, and we lost him in March.
I think your Mom’s symptoms are pretty typical of cc, as they reflect much of what others indicate at the time of their diagnosis. A good oncologist can help your Mom deal with many of those symptoms & the stent should help with the itching (it totally stopped my Dads). He also took meds to try & increase his appetite & he drank the powder nutritional shakes if we mixed them in a blender with some ice-cream. We also went after numerous second opinions, which you can start at any point if you choose, as different docs approach the cc treatment plan differently. As far as how advanced the cancer is, they were able to determine that my Dad was stage 4 – at the time of diagnosis.
I know how hard it is Wendy, and I can tell you’re in for the fight. You’re family is lucky to have you as their advocate!
Come back and post anytime with your questions. If you post a new thread in the introductions section, many more people will see your note & you’ll likely get more feedback- just a thought….
Best,
TessThanks Tess, the site seems to explain everything so clearly about possible treatment. i’m so grateful to you for posting it.
One other query I have which may not be possible to answer – for cc is the jaundice an early indication or a late one? Or is there no measure? I guess it depends largely on where the tumour is located and if its blocking the bile duct and we need to find out exact what she’s dealing with first. From what I’ve read it seems there are no clear ‘symptoms’ of cc until there is a problem such as with jaundice, nausea or deep fatigue and it gets investigated with CT but what I can’t work out is how extensive it can be by this time.
I’m trying to gauge right now how bad my mum is going to get and plan ahead for my dad who is just bewildered by this whole new thing my mum has. At the moment she is very jaundiced, is completely exhausted, sleeps all the time, is very itchy, gets the shakes, is not eating, lost weight and has tablets to control the feelings of nausea. I’m so hopeful that she will feel better in herself after the stent has started to work and clears the bilirubin in her blood, but scared that this is the best it’s going to be from now on. I’m just so hopeful we can find something that will give her a window of time to feel like her old self, as we’re certainly not ready for her to give up on life – and she has far too much she wants to achieve still. I’m sure you feel the same for your dad too.
My best hopes and wishes go to you and your dad and thanks for the time you have taken to respond to my email.
Take care,
WendyHi Wendy, and thanks for the post. Gavin is such a fighter on behalf of his family and was one of the first to welcome me to this site, I am certain he will help you any way he can. My Dad had cc, and at the time of research options we too considered Radio Frequency Ablation (RFA)- which appears to be comparable / perhaps synonymous with Microwave Ablation (http://www.liverpancreas.org/radio_micro/). Perhaps others can provide more insights. They do use RFA as a tool for cc. One hospital here in the U.S., providing a second opinion to us, indicated that tumor size and proximity to a major vessel prevented Dad’s candidacy for RFA. You may wish to search this site for others that have experience with it, there are many varieties of treatments that surface on this site.
We are wishing you and your family strength too Wendy.
Best,
TessGavin
Your story sounds so familiar, it could’ve been our own – as my mum has just be diagnosed with CC after 6 weeks of jaundice, but not yet treated. We are hoping to hear about any spread of the cancer on Thursday after a local multidisplinary meeting. We too live in the UK. We are currently exploring a potential new treatment called ‘microwave ablation’ as I know it is successful for inoperable liver tumours but I don’t know about CC and I will keep posted on here with developments in this regard. We are waiting to hear from the specialist based at Leicester to see if this is an option for my mum.
I am so pleased I read your post, i’m interested that the specialist recommended PDT before chemo treatment which will hopefully be an option if microwave ablation is not suitable. My mum is not currently with a specialist, but we hope to get her referred to Birmingham from Glocs and I don’t want to waste any time.
Having a 13 year old boy myself who was born with a rare and life threatening muscle condition / COPD himself I know how important it is to be seen by a specialist and quickly, and indeed it seems you have to do the research to get the best treatment for your loved one.
Thanks again, to each and everyone here for posting this wealth of information – my heart goes out to you all. Wishing you strength and good health.
WendyHi Lisa,
Many thanks for your post and for your advice, it is well and truly noted. I will be keeping a very close eye out for any of the signs you have mentioned. Once my dad had the stent inserted, he started a temperature twice in the hospital and was given paracetamol for this. It seemed to work at the time and his temperature dropped after a few days or so. Now he is at home, he is still having to take paracetamol, along with a whole lot of other drugs!
Many thanks once again for your post.
Best to you.
Gavin
Hello CS,
This is indeed a most wonderful site and I am so glad to have found it. I only joined the site very recently but the support and hope has been amazing and I am so grateful to everyone here for this. It really does mean a lot to me. I agree that the unknown can indeed be very frightening, but it helps to know that there are others who feel the same way. I wish both you and your mum all the very best for this fight. I hope you also keep posting.
Best to you both.
Gavin
Hi Karen,
Many thanks for your welcome to this site and for your kind words. We are doing our best here to all stay strong and I am doing everything I can to be there for my mum and dad and to help them in any way that I can. They both mean the world to me and anything and everything I can do for them both I am doing and will do. I hope you stay strong also.
Best to you.
Gavin
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