Alex
This is indeed good news and well done for pushing for an assessment about your liver mets - I’m still pushing… is it for Cyperknife or Tomotherapy or some other treatment?
best wishes
Fran
Hi
Thank you for your good wishes.
I decided not to specifically mention cyberknife to the onc because I am not sure that he would have heard of it and I was concerned that this could be a stumbling block. I asked to be assessed for Radio Frequency Ablation.
The onc is referring me to a specialist in another area, I think it is likely to be Birmingham as this is where my uncle had his secondary liver cancer treated. He had two thirds of his liver removed, ouch. I don’t want a liver resection as I have mets in my spine. My plan is to discuss a range of options with the specialist including Cyberknife.
I won’t be too disappointed if I don’t get cyberknife as having RFA will not preclude me from having it at a later date.
Alex
I always go to this site for reassurance when I am feeling scared (which is most of the time!)and thank all the positive people who post their comments. I also have liver and bone mets and the initial diagnosis filled me with absolute dread; I didn’t think there would be anything out there which could get me better but, I have been receiving paclitaxel since 22nd december, one a week for three weeks and then a week off. I’ve just started my 5th cycle and all results show liver is going down and tumour markers in blood have reduced considerably. The thing that bothers me is that after steadily going down the tumour markers went up a little just before this new cycle. Has anyone else experienced the same? I desperately hope it’s just a blip, the doctor didn’t even remark on it when he saw me after looking at the results but I couldn’t bear it if the treatment stopped working after being so filled with hope with the good results.
Hi Siu
The tumour markers are an indicator and on their own not totally reliable. Small changes in markers i.e. if they rise a bit do not mean that treatment is not working. My TM’s reduced by four points once and I asked the onc why this was and he said probably a change in the direction of the wind. I think he was trying to explain there can be a degree of random fluctuation so they need to be evaluated against scans.
Taxel is very strong and it sounds like it is working well for you. When I was initially diagnosed with mets my TM’s were 219. 2.5 years later they are 15 and long may it continue.
How is everyone doing? thread is a bit quiet.
Hi Val
I am still here in between sitting in the garden - glorious again here today. I think the weather is too nice to be sat in at the computer. I am just waiting for a man to come to check my ceiling (after the flood) and unbeknown to OH I am thinking of a Kitchen re-vamp, new worksurface and handles…shhhhhhhhh don’t tell!!!
BY the way, feeling okay after last dose of Vinorelbine yesterday, will maybe flop a bit later, but so far so good. Capecitabine tablets finish in a week and then I am having a short break from drugs.
I hope you are feeling okay Val?
Sue x
Hi all
Sue -are you getting that new kitchen?!! Lovely to plan for -so hope you do go ahead. I keep planning short breaks away from home - seeing new places just revives me and keeps mind busy too which is very therapeutic.
Second Capecitabine going ok now that I’ve Flexinol on my feet as they were awful at the weekend - could not walk at all that was a real problem. Have the udder cream on order so hope that arrives soon. Wonders of the NHS… my Onc said they could only prescribe an aqueous cream so thank goodness for BCN having other ideas that had also been suggested on these forums. Anyway hoping it’s all worth it as I’m sitting more comfortably so hope the liver is being zapped… Did manage a good walk with my yoga teacher today since I’ve not made her sessions for a long time - so am now quite balanced… need to motivate to cook healthy tea…
Do all blood testings pre- chemo do tumour markers? My Oncs have never mentioned them; guess I should ask…
Mackers - hope you are still enjoying green tea and baths. I’ve been drinking decaf green tea since diagnosis and reading about eating/drinking etc - no wonder my energy levels are low with no caffeine… but fennel tea seems to revive me so that’s hidden in an airtight box in the kitchen since otherwise the smell spreads everywhere and all the teas taste of fennel!!
take care all
Fran
Hi Sue, I am well thank you. The caravan has been in for repair. I have the curtains off and in the machine as I write. I am sorry about your recent home disaster but hope you get a new kitchen from it! So glad you are now able to have a break from your drugs. I know just how liberating that can be.
Hi Fran, I had TERRIBLE feet trouble on Capecitabine so know how bad that can be. It felt like walking on broken glass and it had me crying. My Oncologist reduced the dose at this point and that did help. Sorry if I am repeating myself as I get confused with who I have told. I do not think it is “normal” to do tumour markers but to be honest I think they are reluctant to do this testing as it is quite expensive to do. My TM are really high just now but my Oncologist doesn’t think I need to start chemo just yet. But I am happy with this decision as I want to get out and about this summer. Hope you all have a nice day tomorrow no matter what you are doing. Love to all on here. Val
Hi all
Val - sorry to hear your caravan is out of action, during all this lovely weather, but at least it will be all spruced up ready for your next holiday.
Sue - hope you are getting some enjoyment out of planning your new kitchen, it is stressful, but will hopefully be worth it.
Alex - have you had your referral to discuss RFA?
Out of interest has anyone on here actually been successfully referred for any sort of targetted reds on the liver? I mentioned it last year when my liver ‘spots’ where first identified and the onc, said that it wouldn’t be appropriate - I didn’t push it, as I was understandably in a state of shock as the previous CT had been quite encouraging. My last CT showed stabilisation of bone mets, but the liver spots were showing subtle changes, so surely zapping them before they grow anymore would solve the problem? is that too simplistic a view?
Is there a case where RFA would be offered privately and not on the NHS? although that would upset me more, as my husband will struggle to cope financially as it is without us borrowing shed loads of money to ‘buy’ something that isn’t going to cure me and he being left to pay off the debt!
Sorry another question - how many of you with liver mets are having chemo and if so, which chemos? I am still just on hormones ‘faslodex double dose’ but if this doesn’t work the oncologist said he would try chemo next.
For those of you discussing tumour markers, mine are never done! so can’t help there.
Love to you all and hope that those of you awaiting appointments and results get the kind of news we all need!
Nicola xx
Hi Nicky
The onc said that he would make a referral another hospital for RFA for liver met five weeks ago. I spoke to another doc on the phone 2 weeks ago and he said that there was a note about the referral but it had not been done. He said he would do referral to Birmingham but I have still not heard so I have now contacted the oncs secretary and have booked another appt with him on 10.05.11. I have some other questions to ask him about MRI scans I think he may have been comparing the wrong one’s!!
I do remember reading that someone had RFA on liver mets, I think it may have been chilli but I can’t be sure. I know the person lived in the London area. Also there was a young Dr who was diagnosed with liver and bone mets she has had some sort of rads to her liver and is now NED in this area, she was quoted as saying they next step was to attach the bone mets in her spine, I guess this must be with something like cyberknife.
Alex
Hello ladies
I am new to this site but was diagnosed with extensive liver mets in July 2010. Had bone scan no bony mets 6 FEC chemo new CT scanner found 2 bony mets in C1 and C2 following chemo. Have never had MRI scan as very expensive and also no measure of tumour markers also probably too expensive. My local trust has not even achieved foundation status and we share oncologist from nearest foundation trust with gynaecology. She specialises in gynae not breast cancer. However, am now on Bonodrate and Exemestane and all seems stable on my last CT also liver function tests, albumin, calcium and bilirubin all remain within normal limits. Seems most of my tumours are now cystic and there is very little remaining tumour to measure in the liver. Initially, before I knew the tumour burden in the liver I felt that RFA could be an option I would have gone for but due to the number of tumours involved I realised that I would not have been a suitable candidate. Will check with my oncologist in June If that has changed. The criteria for RFA as I understand at University College Hospital in London indicates that solitary tumours less than 7 cm, 5 tumours smaller than 5 cms or 9 tumours smaller than 4cms all other metastases need to be stable. Hope this helps those who are considering this I have not ruled it out. I am very lucky as have had no pain and have been able to return to work and enjoy my life to the full including exotic holidays. I hope you all will eventually feel the way I do am the eternal optimist and try to live life to the full and enjoy everyday. Hope this post has been helpful and that everything goes well for you all. Big hugs.
Ann
Thanks Ann - glad you are doing so well - info on the RFA criteria at UCH is interesting as I might be referred for this at my hospital but at the moment am hopeful that Capecetabine is working well on my liver mets.
Hi All,
Hope everyone’s well. I didn’t know where to post, so just thought I would share here & hope that’s OK…
I’ve been in a lot of pain recently and all the chemo for the liver and bone mets didn’t seem to be having any kind of impact (based on an interim MRI and bloods etc) anyway now they’ve found a tumour on my pancreas…
Has anyone else ever come across a secondary in the pancreas? The onc is now thinking that perhaps the liver mets are actually liver cancer which might have spread to the pancreas. They did a biopsy today and I go for the results on Wednesday… but don’t know what to think anymore… Had just about got my head round the liver and bone mets and the treatment that would hopefully (go some way at least to) sort them out…
The onc said 2 - 3 years at first, and now he’s saying it’s getting worse quicker than they anticipated… I’m trying to be positive but I’m scared…
Sorry for venting here!
Liz x
Hi Liz, I am sorry that you are in a scary place right now. I am sorry I have no words of wisdom for you regarding you new mets. But just to say I hope you manage to cope with the wait until Wednesday. I am sending you warm wishes that you get some better news soon. keep in touch with us. We have all felt scared so know just what you are dealing with. Love val
Hi Liz
As well as the support you receive on the forums if need to talk things through at this difficult time please do give the BCC helpline a call on 0808 800 6000.
Here you can share your concerns with a trained member of staff who will offer a listening ear as well as emotional support and information. The lines are open weedays 9 to 5pm and Saturday 9 to 2pm.
I hope this helps.
Best wishes Sam, bCC Facilitator
Liz
Sorry I don’t have any knowledge to share - but here’s a bit dose of understanding of your feelings coming your way.
Hope you get some info soon and results that you can plan a treatment around.
Let us know how you are getting on
Fran
xxx
Hi everybody,
Liz sorry to hear your news. I don’t know much about liver cancer, I am guessing that they will put in some sort of treatment plan.
I saw a registrar yesturday and she went through all the reports on MRI liver scans. No wonder I got confused. It turned out that at diagnosis in 2008 I had two possible mets and one cyst in my liver. I thought I only had one. One met has gone completely and there is a small suspicious white spot on the edge of my liver which has not changed. She showed my a copy of the letter that he sent asking what would be the best options regarding frying the little blighter.
Bone mets are healing.
Alex D
Hi All,
Just a quick update for you all. The biopsy showed it is a new mets although we’re waiting on a new PET scan within the net few weeks. Pretty gutted to be honest, don’t really know what to think but just gonna wait and hope…
Hope you’re all OK,
Liz xxx
A big thank you to whoever suggested Crocs for sore Capecitabine feet (can’t find the message to find out the poster’s name, sorry). My footwear wardrobe now consists of Crocs, Birkies and roomy low level hiking boots (with Scholl Sensitive feet Ortho insoles for arthritis etc that cost as much as a pair of shoes!) - but thankfully that with these and thick sports socks and Flexitol I’m on the move again this week in my one week break in regime. Still typing too but fingers are sore. Just hoping scan later this weeks makes this all seem worthwhile. Thinking of those of you with scans and hoping you get treatment soon Liz.
Thanks for helping me to keep mobile with such good advice.
Nothing worse than sore feet. I have the same footwear in my wardrobe but I have no crocks yet. I keep looking at them but they seem a bit wide. perhaps I should try socks with them. Glad you are comfortable again Frances.
Madmusicgirl, hi Liz, any news about PET scan and how are you feeling this week?
Alex, How are you feeling after your MRI scan. I read your post above but wondered what was happening now. Love to all, Val