Tomorrow I have to go in for an MRI Scan and some Xrays on my femur. I have to wait in one of the wards for results. I have to be prepared to stay in. If anything shows up on these tests I may have to have a bone scan. I haven’t had one done since July 2008, which really surprised me. Doesn’t time fly when you are enjoying yourself! I may have to sit around for ages so luckily have a good book on the go. “Fall of Giants” by Ken Follett. I highly recommend it if you haven’t already. Be prepared though as it is a HUGE book. But very easy to read. Wonder if this makes my back and leg problem worse. hee hee! Anyway not to be put down I have been busy ironing clothes for my cancelled/postponed holiday down south. Will get back on here as soon as I can. Anyway I am relieved that my symptoms are being taken seriously and that tests are going ahead so quickly. hanks for listening and for being there. Love Val
Hi Val
Hope your scans go OK tomorrow! With regard to heavy books - I recommend a kindle, I only got mine at the weekend and I love it! I bought it mainly for waiting around at appts etc, as it fits in my bag easily and I can read a variety of things dependent on my level of concentration. I took it to my appt Today and for once I was seen promptly, so didn’t get much reading done.
I have just found out Today that I need 14 sessions of radiotherapy on my leg - to mop up any cancer cells that may have been dislodged during surgery!
Which is a problem as I can’t drive yet the oncology unit is in a different county and my husband is really busy at work. I guess I will have to call in all those favours and offers of help that people have made!
Did I miss the post explaining why you had postponed your holiday, was it to have these scans? - Hope you manage to get away soon,
x
Hi Val & Nicky
I like Ken Follet books too Val and have a couple waiting to be read. Like you Nicky I am thinking of getting myself a Kindle as I can go through a book a day when on my hols and if we do manage to do the grand europ tour that OH wants, it is the only way I will be able to keep myself in reading material…I am miserable if I don’t have a good book.
Good luck tomorrow Val I hope they find out what the problem is and get it sorted out asap.
Hugs Sue xx
Good luck with results tomorrow Val - hope to hear from you again soon with info on your treatment plan.
I must get back to reading - loved it prior to dx but having shoulder op made holding a book a problem - arm now much more comfortable so maybe should start again; like the idea of a light weight Kindle without the problem of holding pages open…
Am on the move now with crocs and thick socks so hope next cycle of Capecitabine does not set me back too much… even fingers feel better today!
take care all
Fran
x
Thanks for all your kind words. I did see the Kindles in John lewis but as I have a ROOM full of books yet to read I think I will read them first…but very very tempted especially when going away on holiday. I usually take more books than underwear!
Fran hope you continue on your chemo without any more side effects. I have a lovely picture of you from your description of crocks and socks. Speak to you all again soon. Val XX
Hi All,
Val will be thinking of you tomorrow, and hoping everything goes well, god luck!! I too love books, and like you have so many to get through!! I don’t fancy a Kindle, I don’t think it could replace the feel of a book for me!!
What a bummer Nicola!!! Sorry you have to go through all those rads!! Would the hospital not provide a hospital car? I live in Suffolk,and have to go to the next county for treatment,and when my husband couldn’t take me they sent a car…well worth checking it out!!!
Sue and Fran it’s nice to see so many book fanatics on here!!! A Kindle might be the answer for you Fran!!
Take care all, lots of love Mary xx
Nicola, I have heard in various parts of the country that there are voluntary people to act as a taxi service for people who need transport to the hospital. Would a call to your BCN or Mcmillan be able to find out for you? Just a thought.
Thanks for your words Mary. I too love the feel and smell of a book. I am always looking back pages too as I cannot always remember where I am at in a chapter! Maybe both forms of reading are the answer! Love Val
Hi All
I had large tumpur in liver ( 7 cm shranke to 1/2 on chemo) and 2 dots that I had RFA on after chemo (EC) last December. I had a scan march NED but sadly came back April in nodes, liver and lung. I am back on chemo but have not ruled out more RFA as the Rad said he repeats on people and as long as not extensive ( similar criteria to ECLH) will treat. He said up to 65 % success. I was treated at Kings and know Guys and St Thomas also do. Cyberknife can also be used for liver
Hope helps
Hope15
Joanna
Thanks Joanna for the info re cyberknife. I wasn’t really in a position to discuss this yesterday, as the appt was to discuss rads following my surgery, however after my next CT, I am really going to push for the cyberknife. It is useful to able to actually quote “I know somebody who has had it done,” If you’re fobbed off as the procedure not being suitable for liver mets. My liver mets (2 at the moment and only tiny!) are not concerning my onc at the moment. But they concern me! surely if they are removed the prognosis must be better? Sorry to hear that yours have returned, but if your onc is suggested redoing the procedure that sounds positive.
Hi all, new to the liver link as just been told this morning the C has spread from bones to liver and am totally devastated, can’t stop crying etc, and I need to before the kids come home from school! Trying to get my head round the chemo options given to me, either the Gemztaxol one or the Xeloda (capecitabine). I’m tempted to go for the latter as its tablets and seemingly you don’t lose your hair (possibly some thinning) and Onc this morning said only a 10% difference in results. Any advice girls? I can’t stop thinking about my children , both now and in the long run… any advice and positive stories much appreciated, thanks.
Hi Wannee
I am sorry to read about your new diagnosis, please feel free to call our helpline if you feel it would help to talk things through with someone in confidence on 0808 800 6000, the lines are open 9-5 weekdays and 9-2 Sat
Take care
Lucy
Hi Wannee and everyone else.
So sorry to hear about your diagnosis. I was diagnosed with bone and liver mets in Nov 2008. I had eight cycles of chemo FEC and Taxol. I thought it was the end of line but here I am 2011. One met in my liver has disappeared completely and the remaining one is small and stable so I hope to get it zapped soon. There is a lot of treatment options available. Marilyn’s had liver mets for years and she’s been on Xeloda for 7 years!
If I had to choose between chemo’s I would go for the most effective one, however I don’t mind losing my hair although I understand why this could be an issue for you.
Val hope your MRI goes well for you today. My MRI scan on liver was good as it could be. The onc made a referral to a liver specialist in April but still not heard anything apparently all the BH’s have caused delay’s. My goal is to achieve NED in my liver.
Alex
Hi Wannee and others
I can understand your distress at the diagnosis - this site has really helped me realise there are good treatments around so I hope you settle down with time… Not sure about the two options - I’m on Capecitimine and doing fine with the tablets with just sore feet and hands as side-effects but I have lost my hair twice with FEC and Taxotare and although it was traumatic initially I have learnt to cope and now it’s just part of life and is growing back so I’d go with the treament that has the most chance of success. Not easy being given choices when emotions are high - I’ve not had to make any as Oncs seemed clear on what was best choice.
I’m sure others will come along with ideas too - this site has really helped me. Many posters have coped well with their liver mets for a long time and I get alot of comfort from that thought. There are also new treatments coming along all the time such as Tomotherapy and Cyberknife that are stereostatic radiotherapy treatments available in just a few hospitals so that’s also very encouraging.
Still thinking of you Val and Joanna and others
Fran
Thank you so much everyone for your kind comments, I do feel more upbeat about things after what everyone has said. This site is something we just cannot do without, its so good to hear others’ stories. My husband says I should put this on here, I said it will get taken off cos its rude, but it’s all I’ve been saying all day, here goes, and sorry if I offend anyone: “effing b*****d cancer”, haaaaaaaaaaaaa thats better!!
Glad you feel better Wannee - know just how you feel about this BC! - you can interpret the B as you wish!
Keep in touch
Hello all my cyber friends,
Had the day at the hospital and in brief all went well and no bad news. However I am no further forward with symptoms for left leg. But at least I know there is nothing showing up in MRI Scan or numerous Xrays. I got a full physical going over too by the lovely (overworked and on-call) doctor. She couldn’t find anything either. So the plan is that I have just to see her again in July on my next check-up, unless symptoms become worse of course.
While I was waiting I got into conversation with some other patients in the small sitting room. Made me realise just how lucky I am. One young man had a brain tumour removed and had a seizure on Friday and was admitted for a few days. He was allowed to go home today. When I was working and became unwell it didn’t cause me any problem leaving work.There was always someone to fill my shoes. This young couple had a farm with sheep and cattle and they had to sell off all the stock as they would be unable to cope with lambing and the care of the animals while this brain tumour was around. However on the brighter side he said that meeting me had really made an impression and that he was amazed that I had being dealing with this for such a long time. He said that meeting me had made his day. It certainly made mine to see him smile. It almost felt that it “was meant” for our paths to cross.
I was worn out when I got home so crawled into bed for a long sleep. Thanks for your support and caring words. Just feel a little “daft” that nothing showed up. Not that I thought it woud really. But still have the problem. So to keep on the increased Gabapentin and see if that helps. Night night, Val
Hope you slept well Val and feel better today after efforts of yesteday - hospital visits are sooo tiring. Bondronet is now taken and absorbed; must have breakfast before fasting for 3pm CT scan - all this organisation of medical matters take up time and energy…
Hope you all have a positive day
Hi Val
Glad to hear that the scans didn’t show anything up, sorry that you’ve got no answers, but hopefully now that you know there’s nothing to worry about it may improve.
I liked hearing about your meeting with the young man, it made me smile, you have given so many of us inspiration and hope on here, it is good that you are spreading your good news wider!
Frances - hope the scan goes OK!
Alex and everybody else on here - good luck in your mission to be NED!
Thanks Nicky - when do you think you will start of your radiotherapy journey with so many treatments?
Am wondering about radiotherapy and secondaries in bones so can anyone help? I’ve signs that cancer has moved into my hip and Onc said they could only treat it palliatively to ease pain when it gets back (at the moment just a vague ache at night) but it sounds as though some of you have had it to tackle the cancer growth itself. Thanks for any info
Fran
Hi Frances
I was going to be given rads for pain relief only on my hip last year, I was actually laid on the bed at the planning meeting, but was asked to go and wait in the waiting room with my husband. They then called us in and discussed the possibility of referring me for surgery as the area to be treated was in their opinion too extensive. I had the surgery this April. During the operation 14cm of my femur was removed, but they then drove a huge spike right down the middle of the bone almost to my knee.
The use of radiotherapy this time is to mop up any stray cancer cells that might have been pushed down into the bone marrow. I also have bone mets in other places :- spine, neck and shoulder, but was told that these areas will only be treated with radiotherapy if they become too painful. My oncologist is reluctant to treat too soon, as he says radiotherapy can’t be used in these areas again.
I have however at times been concerned about lack of regard for my bone mets, I haven’t had a nuclear medicine bone scan since diagnosis to check development. I only seem to have a CT and they seem to measure progression by referring to the met in my sacrum, liver and ones I have in the mediastinal (Sp?) nodes in my chest. What check ups do others have for the bone mets. My hip/femur mets have however been very well tracked (but that is because I was referred to a specialist orthopaedic hospital and the standard of care there was amazing!)