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Beating Bowel Cancer Community

Life with bowel cancer

TraceyJ61

Palliative Chemotherapy

Hi. Is there anyone who has been told they are on Palliative Chemotherapy? I have a 4cm tumour on my sigmoid colon and liver metasis. I was told that as the mets on my liver were quite extensive they didnt think that the Leeds Liver Unit would consider me for an op so there was 'no point' in operating on my bowel and I was to received palliative chemotherapy.

They did an MRI on my liver as a base line scan in Sept and started Oxaliplatin and Capacetabine. I was then passed to a different oncologist who was talking possible operations if successful. I managed 6 full rounds but had problems with throat spasms especially when they put the flush through after my chemo IV and when I had the dye injected for my follow up MRI so they reduced to half the oxaliplatin on the 7th treatment.

Last week I was told that the liver MRI showed some reduction and that they would pass the first MRi scan from August and the second MRI to Leeds Liver MDT for consideration for operation. I also had a CT of my bowel/abdomen and lungs which apparently was unclear if any reduction on the bowel tumour.

Have just got letter through today to see the original doctor who put me on palliative chemotherapy next Weds so am now worried that its not good news from Leeds and no op.

So basically my question is If you are on palliative chemotherapy and it is working do they continue with chemotherapy indefinately or is there a limit to how much you can have and they stop? Will they continue with treatment to see if reduces more and reconsider operation or do they give up and manage symptoms only? or does palliative mean they have given up trying?

TraceyJ61

Thank you @Alan C @Lizalou @Baxter2 @DianeS @Kathy L for all your kind and supportive comments. Yes I am disappointed but Leeds Oncology team really on the ball. I only saw the liver consultant late yesterday afternoon and the nurse rang me this morning with an appointment to see the Oncologist tomorrow morning to hopefully start the ball rolling with the radiotherapy asap as I am in a lot of pain and can hardly walk. I also have appointment with my hospital Oncologist tomorrow in the afternoon where I am hopefully wanting to re start my chemo so my liver and bowel symptoms can be kept under control.:x::x:

Baxter2

I’m so glad things are moving quickly to help your situation @TraceyJ61!

Will you let us know how tomorrow goes?

Sending love and all my very best wishes,

K????❤️

TraceyJ61

Thanks for replying @Baxter2 and yes I will let you know :) :x::x:

Ev

Hi @TraceyJ61 I'm sorry to hear you're in a lot of pain with this - sciatic pain is so cruel. My husband had a met removed from his sacrum last year but it looks like it's either starting to regrow at the margins or a new met is growing in that area and is putting pressure on his sciatic nerve. It has meant that he has the same type pain as you have described and he found that the likes of cocodamol just wasn't helping at all. He put up with the pain for months on end (some days he described the pain as 9 out of 10!) until eventually he gave in to trying something else and it seems to be helping more. He's now on oxycodone and the oncologist and GP are trying to get the right dose at the moment while they come up with the next stage of his treatment plan. He's also been told that if this new pain relief doesn't help then they'll get the pain management team to try to find the best pain relief for him. So please make sure that when you meet with the oncologist that you come away with some plan for pain management too as it can make a huge difference to your day to day living.

TraceyJ61

Thank you for that piece of advice @Ev :) :x:

TraceyJ61

Hi @Baxter2 Went to Leeds yesterday to see oncolocgist they are just giving me one blast of radiotherapy to ease the pain in my hip and not as I thought to reduce the tumour but apparently it can prevent new painful areas developing? Leeds have been really good though I am going in this Friday morning for the planning scan and hopefully have the radiotherapy treatment early next week. They even offered me transport to and from hospital as I cannot drive at the moment.

I then had appointment in afternoon with oncology at my local hospital to discuss continuing my chemotherapy which stopped 25 Jan because of proposed liver op (which is now not going to happen due to bone metasis) The last 3 sessions have been halved due to allergic reaction (swollen tongue) but now that can be managed with hydrocortisone I wanted to go back on full treatment and they have said no that I have to stay on half as its not good for me to change back to full. So I have to wait another couple of weeks to recover from the radiotherapy before recommencing the chemo for final 3 sessions.

So am back on palliative chemo. I have only 3 sessions left and apparently then no more for another 6 months? do they not give you anything in between? :x::x:

Baxter2

I read and re-read your post with interest (as well as concern) @TraceyJ61.

Firstly, I know you live on your own but do you have someone who can accompany you to appointments Tracey, in particular, consultations with your oncologist/surgeon? I think as a general observation, we patients are unable to take in all of what’s being said and process it especially when it’s bad or unexpected news. It’s also really important in my opinion to write down bullet points/questions in advance in preparation for the appointment and to ensure they are answered (and perhaps jotted down by the trusted other you take with you.)

I’m glad you are being given the radiotherapy to address the pain but like you, I thought perhaps it was to treat the met as opposed to control pain. I think it’s prudent to ask about this course of action since you need to have understanding and confidence in the plan.

With regards to your chemotherapy: I started on Oxaliplatin and Capecitabine when first diagnosed. It didn’t work for me and I developed mets in my liver and peritoneum over the course of 5 cycles. The side effects I had were pretty awful but won’t go into that here. It works a treat for many!! It was then stopped. My oncologist told me I must be resistant to Oxaliplatin. My status then changed to stage 4, inoperable and incurable. I was then started on Folfiri and Cetuximab which was a walk in the park in comparison side effect wise. I have no nausea (the very worst side effect in my opinion-worse than any pain I’ve ever had!) Folfiri is Folonic acid, irrinotecan and 5fu (via a bolus IV injection and 46 hour pump Infusion via my portacath) I also have Cetuximab IV too (only suitable for about 50% of us I believe) Anyway, I was told when given my bad news, and trust me, I had a meltdown in the oncologists room, she told me I’d be on chemo for life or until I couldn’t take anymore or my disease was progressing and my health was failing. I think now is a good time to perhaps ask about first/second line treatment e.g Folfiri with/without Cetuximab or perhaps another biological alternative. Don’t be afraid to ask......this is your life and you absolutely have to be your own advocate. I learned that lesson very early on! I’ve now had 34 cycles of it and manage the mostly annoying side effects very well on the whole. I had a six month break for my surgeries (see profile) and by the time I started back on chemo, it was back in my shiny new liver ?

Try to see the oncologist you preferred. This is absolutely crucial. I had the distinct feeling my oncologist had given up on me (and another two patients with same diagnosis as me) She stopped my 5fu bolus as I became neutropenic and refused to allow me to have it again (as well as no offer of injection to boost my neutrophils) She offered to remove my Hickman line and stop my 5fu pump too as well as continually refusing to refer me to a liver surgeon for an opinion (using our health insurance) ? She did want to refer me to a psychologist however to help me ‘accept things’! The lady I met was lovely but I did tell her I had no intention of accepting things! Soon after, I changed oncologists and have not come across any medical professional quite like her!

Anyway, sorry for the long post........you’ve maybe fallen back asleep by now! ??

Hopefully this will help but it’s only from my perspective. I think it would also be useful to run this by @Charlotte Nurse Advisor who can hopefully help you navigate the best way forward.

Lots of love and hope,

Karen ????❤️

Alan C

@TraceyJ61 Your situation and the small number of us on the forum with bone mets, illustrates the lack of useful information available for patients.

I've tried questioning the health professionals who maintain a hopeful outlook with little information.They maintain that chemo works on all parts of the body excluding the brain. The chemo will help reduce pain.

I resorted to Dr Google and scared myself so wouldn't recommend that course of action.

I started back on chemo last summer after it was decided radio wouldn't be helpful for me as previous radio (cyberknife) was too close to the nasty in my spine, and would increase the danger of fractures and weakening the bone. I think that's one of the reasons they don't like to give too much radio.

Karen has hit the nail on the head with her post. It's important to try and get as much information as possible but the doctors often seem as confused as the patients when this disease takes an unusual or unexpected course.

I look forward to Nurse Charlotte's advice.

I won't add anymore just to wish you well.:)

Charlotte Nurse Advisor

Thank you @Baxter2 for the tag.

Dear @TraceyJ61,

I think what your post and the comments from others highlights is that treating advanced bowel cancer is complex and treatment plans vary greatly from person to person.

It is impossible to draw any comparisons between treatments even if the stage of disease sounds similar. What is important though is that you understand the rationale behind your consultant's recommendations for treatment and to ensure that he or she clearly explains the reasons and expectations of the treatment.

In the management of advanced bowel cancer treatment often has to be adjusted to ensure that the balance between the potential benefits of treatment are carefully weighed against any harm it may cause. To complicate matters consultants also have to wait to plan their treatment depending on what the latest scan shows. This can be interpreted as confusion but in reality the pathway of advanced cancer is unpredictable and at present the medicine available to us can only treat what can be seen. Therefore treatment is 'reactive' rather than proactive.

Treatments can, as in your case, be used to either try to treat the cancer or to treat the symptoms, such as the radiotherapy to your hip. Often it is a combination of both. As far as how long treatment continues we are now seeing more and more patients living longer with tailored treatments designed to stabilise the disease, this is often now referred to as maintenance therapy. Furthermore the developments in supportive therapies to help manage the side-effects of treatment have enabled patients to continue on treatment for much longer, with occasional breaks in treatment.

I hope your current treatment is going smoothly and please do get back to me if I can help any further.

With kindest regards,

Charlotte

TraceyJ61

Thank you @Baxter2 @Alan C @Charlotte Nurse Advisor for replying.

@Baxter2 Yes I have a very good lifelong friend who attends appointments and is also my chemo buddy but she has her own business so sometimes when appointments are short notice ie like this week it was reassuring to know that the hospital could arrange transport if I needed it. Did you have to change hospitals to change oncologist? The outcome may be the same but I want to deal with someone who will help me fight this rather than just getting me to accept it.

I think this week I have been in a state of shock and with the appointments happening so quickly not had chance to think things through properly but I understand that just one treatment of radiotherapy is for pain control and consecutive ones for shrinking the tumour. I am not under Leeds hospital so I dont know who to talk to about this? I dont have a point of contact at my local hospital. I think the oncologist that I trusted at my local hospital only sees patients where they are considering surgery and the one I have been put back with the one that deals with the palliative side and she has already told me her aim is to control my symptoms. I know it seems unfair to say I dont trust her but if there are any slight problems she is too quick to stop my treatment at my last treatment due to the allergic reaction the HODU nurse wanted to try the hydrocortisone at beginning of treatment but when she asked the oncologist she said 'she is only on half a dose so its up to you, try the hydrocortisone or not do the treatment' luckily the nurse went for the hydrocortisone option which worked a treat. So when I asked her yesterday if I can now go back to full treatment as I only have 3 left she said no that the half a treatment was a large dose and would work as well and that it might harm me more than good if I went back to full dose. Apparently then I have to wait 6 months before I can have chemo again? @Charlotte Nurse Advisor you mention maintenance therapy with occasional breaks but I havent been offered that. I asked what would I be taking in the 6 month break they said nothing but to contact them if I had any problems?

There seems to be communication problems between my hospital and Leeds It would help if there was one overall person co-ordinating things a point of contact for me?

I still dont know why I cant have my bowel resection, as that is the cause of everything and am tired of being on a low fibre diet (6 months now) I was told at the beginning that there was 'no point' doing the bowel resection as they thought Leeds would not consider my liver but when I first met with the Leeds liver team a couple of weeks ago they said that they had expected me to have had a bowel resection before being referred to them.

Thank you again for comments and support, its much appreciated. :x::x:

Gill

Hi @TraceyJ61

I think I'm in a very similar position to you. I have a tumour in my sigmoid colon with multiple bi-lobular mets to the lungs and spots in the lungs. I wasn't offered surgery for the primary and told that liver mets are too extensive for surgery. I've now developed a strange lump on my forhead that nobody seems to know what to do with. I've had a CT scan on it and it shows up as being attached to my skull with significant bone damage underneath - think I have the proverbial hole in the head. Now waiting for a biopsy but they don't seem to know which department to send me too - tried dermatology this week, but they said it's not a skin problem and sent me back to oncology. It doesn't help that my consultant oncologist flew off to Australia yesterday for three weeks....

I have been on palliative chemo every fortnight since October 2016 - I'm up to my 34th dose of Folfiri and it is keeping things stable (except for the new one on the head). I've been told that I can keep up the Folfiri until it stops working and then they will try adding in something else.

By the way, I moved hospitals and changed oncologist as I felt my initial one had already given up on me. I now feel that there is much more they are willing to throw at me (except surgery)

Best of luck to you,
Gill :x::x:

TraceyJ61

Hi @Gill

Thank you for your message. Am sorry to hear about your lump on your forehead. Hope you manage to get the biopsy done soon. Let me know how you get on?

The 2 CT Scans I had of the pelvis in Sept 2017 and end Dec 2017 did not show any cancer in my bones it was the PET scan I had a few weeks ago that revealed a 'large mass' on my right hip.

I have been told I can only have 12 cycles of chemo then I have to have a 6 month break as its not good for my body? even though it has been working - 1 liver node clear and my tumour markers down? my last 6 cycles are less than half a dose now and have already had a month break in prep for the poss op which has now been cancelled so they have resumed my last 3 chemo sessions yesterday (hence on computer at 4am due to steriods) I have seen on this website that other people like you are continuing their chemo so am going to push this at my next appointment on 28 March

So have decided to finish my last 2 treatments and then seek to change hospitals. I dont know if you can change to one out of the area where you live? We have two hospitals but they both have same oncologists - they work at both hospitals.

Good luck with the biopsy, hope you manage to get it done soon. Tracey :x::x:

Baxter2

Good morning @TraceyJ61

I too am recently wide awake due to steroids ?? (great for getting windows and odd jobs done around the house in my case!!)I had chemo yesterday and just had number 35 of Folfiri and Cetuximab.

I did have an essential break for 6 months to enable me to have surgery and unfortunately in that time, the nasty b****r returned to my liver. ? I’ve been told chemo for life or as long as I manage. Fortunately, I tolerate it apart from a few mostly ‘annoying’ side effects. I never have nausea for example.

II guess what I’m saying is, rather than let cancer attack my body, they are happy for me to have chemo as it seems to be keeping things (mostly) in check. I know you can’t compare one cancer with another etc but if I were you, I’d be asking about the rationale for the decision to give a six month break?

Getting a second opinion can be done via GP I believe. I just referred myself to the LOC in London for mine just to get a review of my treatment plan etc. My first nhs oncologist sadly destroyed all hope I had at every consultation and was detrimental to my emotional health not to mention my physical health! I felt very much like she had simply written me off.

Hope you get something sorted which restores your faith.

Lots of love,

Karen ????❤️

Gill

Hi @TraceyJ61 ,

It may be that we're on different chemo treatments. I'm on Folfiri which is Irinotecan with 5FU. I've been told that I can take occasional breaks if I want a holiday and have done that a couple of times.

I haven't had a PET scan which I'm guessing would have shown up the lump on my forehead before I realised it was there. I'm going to push for a PET scan when I next go in as my tumour marker is still rising. It had gone down to 45 (from 6717) but has now gone back to 240.

As for the blasted steroids..... I take a sleeping tablet for the three nights I'm on them! It's the eating I have trouble with, I can't stop eating and have put on nearly two stone!

@Baxter2 I'm lucky to have limited side effects too. No sickness or diarrhoea (not much hair mind you). The ones I'm struggling with are mucousitis in the mouth which makes eating anything other than porridge, yoghurt and scrambled eggs extremely painful! Nasty cuts on the corners of my thumb nails as well, which open up every time I knock them.

And no, still no news of my urgent biopsy (and I am phoning and chasing....)

Love to you both,
Gill :x::x:

Baxter2

Hi @Gill

Oh the nasty cuts to sides of thumbnails are just the worst aren’t they?! I use difflam mouthwash (on prescription from GP) and when I has some trouble with much mouth, I bought difflam mouth too. Do you get wonky long curly eyelashes and weird eyebrows? I’ve snipped most of my lashes short as they were poking me in the eyes so I have some false lashes to wear on occasions! Got to keep up the standards haven’t we?! I also saw a podiatrist who worked some magic (I’m hoping on 5 nails affected! Yeeuch!

Joking aside, I do hope you get some news about your urgent biopsy soon! As you say, keep chasing!

Lots of love

K????❤️

Gill

Yes @Baxter2 I'm fed up with nasty bits of plaster on my thumbs and doesn't it seem daft to be moaning about something so trivial!

I use difflam (on prescription and buy my own) also Gelclair (lucky enough to have managed to talk my GP into prescribing that as well - though he did turn a nasty shade of puce when he saw how much it cost!). Also getting quite good results with salt water gargle.

No my eyelashes are only short but my eyebrows resemble Mr Spock's at times, though they're a bit more 'normal' at the moment.

Going out for lunch with friends tomorrow (hope they do yoghurt) so I shall be getting 'glammed up' and doubtless they'll all tell me how well I look! (Anyone else want to slap the next person who says how well you look or is it just me?)

As for the biopsy - I shall be doing it myself with an apple corer soon!

Keep laughing!

Gill
:x::x:

Baxter2

Hi @Gill

Haha! Yup, you’ve got to laugh haven’t you?! It must be rotten having to completely watch what you eat through.....that’s no fun!

I’m told I look so well all the time too. Maybe I look like s**t but they want to give me a boost? Haha!

Love your great attitude Gill!

K????❤️

TraceyJ61

Hi @Gill and @Baxter2

Wide awake at 2am - will try some sleeping tablets thanks @Gill for that suggestion. Though like Karen I am getting lots of jobs done. I have been practically bed ridden for the last 3 weeks (apart from hospital visits) due to pain in hip but radiotherapy has taken care of that so now pain free.

I am on a different chemo taking oxiplatin and capacetabine 6 full treatments 4 half treatments with 2 more to go. I have asked why the 6 month break but was told that it wasnt good for my body and that I needed a break. My last scans at the end of December showed shrinkage on liver and stable bowel (didnt spot the hip) and apparently my bloods since then have shown lower tumour markers so its obviously working but onc said that it is quite normal to show some improvement after 6 treatments but it doesnt work as well after that? I have no serious side effects apart from neuropathy but only mild and when I have my IV I get a swollen tongue when they put the flush through but this has been sorted by giving me hydrocortisone at the beginning of treatment. Apparently I am due another CT scan end March/Early April so will know more then.

I must admit I have to grit my teeth and smile when people say to me how well I am looking like they are surprised!? Even though I feel like s**t my make up must be good!

Love to you both thanks for making me smile :) :x::x:

Baxter2

Hi @TraceyJ61

I pm awake too but hoping to get back off to sleep now! Just wanted to say Hi and I’ll message you properly later on. I need all the beauty sleep I can get to keep those compliments coming hahaha!

Hope you manage some more sleep too!

Lots of love,

Karen ????❤️

TraceyJ61

Hi @Baxter2

Just about to sign off and get some sleep. I need it as I have to open up my shop at 9.00am so will need extra time to slap on extra make up so I will look so well! Love Tracey :x::x: