Hi Everyone
Haven’t been on the forum for some time - but noticed the discussion about insurance. I have travel insurance with eurotunnel but after conversations with them it transpires that they will cover you for travel - but not for the cancer. I insisted the telephone operative checked with the manager - she confirmed that the Dr’s note isn’t sent to them - it is your back-up that you were fit to travel if there is a dispute - BUT that they didn’t cover the cancer if you were still having any sort of treatment - and of course most of us are!
Still bought eurotunnel as general travel insurance - but decided not to visit USA as too risky. I think maybe if it was a different kind of cancer I might risk it but with bones - there is too great a risk of breaking something - and USA medicine is so expensive.
Good luck with the search.
Chris
Good morning, I have been feeling really anxious and worried over last couple of days. My chemo is over and my body has responded well. Now I am on letrozole. I have scans booked in to see if this has maintained the response. I just seem to worry in case its not working. (tomoxifen didnt). I am still tired some days too.
I have met with work and am going back on a phased return after half term. Again another source of worry. Will I cope, be able to do the job or be too tired. I am sure once I have my routine and purpose back I will be fine.
Its not like me to feel down. I guess its the not knowing whether this treatment plan is working. I have no pain and the rads to my hip have been quite amazing in that I can walk unaided and do not need any pain killers. I have yoga later at the hospital, that always helps and zometa and zoladex tomorrow.
My oh and I have booked a lovely hotel in Poole over looking the sea next week so that may help me get out of this strange place I seem to be in at the moment.
I hope everyone else is feeling ok.
Take care
Mel xx
Hi Mel
It is all such a worry so i hope you enjoy your trip to Poole next week and find yourself in a more positive mind afterwards.
Can any ladies assist with advice or had a similar experience? My mobility has worsened due to numbness and was given a zimmer frame two weeks ago. My CT, MRI and brain scans were okay and my onc said he didnt think the problem was cancer related so referred me to neurology consultant who i saw today for results of electric current tests. He said that the nerve centre at the base of my spinal cord has been severely damaged by active cancer and that i will end up in a wheelchair as my condition will get worse. Apparently my brain is not being told where my legs are. I have an independent living person coming tomorrow to assess my home for mobility aids and i have been told to tell them to think on a big scale. Was i really walking round Oxford Street and catching the tube at the beginning of March celebrating my 50th? I am really shocked at how quickly this has happened. I hoped it would be a trapped nerve needing physio and i could ditch the zimmer!
More worryingly is that the cancer is so active. My appointment to see my onc has been brought forward from wed next week to mon lunchtime and further chemo has been mentioned. Guess the Tamoxifen hasn’t worked! Am i unique or can someone help with any info from experience?
Best wishes to you all
Caron x
Mel it is normal to worry treatments are not working, I hope you do not have long to wait for your scans so you can get it confirmed.Also don’t be so hard on yourself,it is not long since you finished chemo and the tiredness is normal,the chemo and rads hang around in the body for months but they also continue working long after you have finished treatment.
really pleased rads worked for you,I had 5 blasts to my pelvis a couple of weeks ago and must admit the pain is better but still not able to manage without a crutch as yet.
Enjoy your holiday and justn try to concentrate on enjoying yourself and leaving all the cancer rubbish behind (I try to put it in a box when I go for a break and leave it there until the time comes and I have to worry about it again).
Just be kind to yourself and build up your energy ready to face the normal world again.
L xx
Thank you Caron and Lucinda. I feel a bit better having been to yoga, its amazing how I feel much calmer afterwards.
Caron I hope they can can help you with your mobility.
Lucinda my hip took 8 weeks or so to feel less painful, now 11 months on you wouldnt even know I had such terrible pain.
Thank you for your words of wisdom. I have my zometa and zoladex fix tomorrow.
M x
Mel,
sorry to hear you are feeling so low. Remember you’ve been through a lot! Returning to work may be good, get your mind off cancer. i’m also returning to work next week, after 9 months off so can understand your feelings about that. Just enjoy your holiday away 
i also have a question for you ladies. Just had my CT scan and Dr rang me to say I have fluid in my abdomen, asked me if I had any symptoms like nausea, vomiting - which i don’t. I have my onc appt next week to discuss but now I’m worried. Does as this mean the cancer has spread to my stomach? Has anyone had the same experience?
xx
carrie anne I have been thinking of you.I am sorry I have no words of advice or have experienced what you are going through,and can’t imagine how scary it must be.My mobility has got worse over the last 3 years since dx but mine is related to arthritis as much as cancer.I think the fact that you have not had many replies from people with similar experiences may mean that your situation is unusual.I really hope that they are wrong about the speed at which this may progress and you have time to adjust to your new situation.please keep us informed on your progress and my thoughts are with you.Take care.
L xx
Caron,
Don’t despair! Like you, I was very active until the autumn when my 1994 breast cancer caught up with me. Spinal cord compression, active cancer all over the place with ‘very extensive’ bone mets. I was within days of paralysis and bed ridden. But after rads, steroids and endocrine therapy I am on the up. I have been discharged by the local hospice team. I can do 0.5k on our treadmill in 10 mins. A lot of the occupational therapy equipment, eg wheelchair, hospital bed, has been returned. I can always get it back.
The occupational therapy people are fantastic, in my experience. Great to get the equipment of course. But equally important to find out what your Onc is proposing to do about the ‘active’ cancer. You’ll find a lot of info on this site to enable you to ask the right questions. And then to be proactive in managing your own health.
All good wishes and big hugs,
Susan xxx
Hi Everyone
I hope you are all managing to enjoy your weekend.
Lucinda - Thank you very much for your kind words and yes i will let you know what happens. I am seeing my Oncologist tomorrow at 12 and am going to ask the big question. Its lovely of you to be so caring.
Susan - How amazing you are to become mobile again. Your message has eased my fear and despair somewhat by thinking if you can do it, so can i. You have given me some hope. Thank you.
Take Care
Caron xx
While since I postd and it was probably bragging about how side effect free I was on Cap. All may be changing! for a while I’ve had tingling lip nose ad cheek on my left side but it didn’t bother me too much so I mentioned it to my chemo nurse but we didn’t really discuss it much. During 2 week hol in algarve I noticed my sight was a bit blurry - thought nowt more f it. Homeabout 24 hours and I realied my left eye was pretty useless. Mentioned t chemo nurse and she said see opticain. This I did yesterday and they did a lot of checks but found nothing obvious wrong. Tey arranged a visit to ey hospital latertoday for me. Events overtake however and I woke thi m with a bloatedtongue - left handside - filling my mouth. OH rang chemo nurses, andadvice just back is stop Cap - if side effect a rareone but only way tto prove one way or other. Start nice steroids to stop me sleeping and blow me up (!) and continue them til we get resuts of CT head scan we’re going to request urgently (obviously thinking brain mets). Not a happy bunny and scared too. Sh1te sight, diffs talkining and eating, and a brain scan - what esle can a girl ask for?!
Hi Nina
So sorry to hear about your eye and face problems. It sounds really scary . Will be thinking of you while you get it sorted. Hope steroids will help. It seems to be the way of this horrible disease, just when you think it’s safe to go back in the water … Another shark rears its ugly head. Go well and let us know how you are. Love Ali .
Hi Nina
Sorry to hear what’s happened and hope it is a SE of Xeloda rather than anything else. I think we all live in fear of this disease whatever stage we are at.
Nicky x
Hi Nina, I have the same problem with my laft side only on my face. If I touch below my eye socket, down my cheek, along to my nostrel and down to my chin, my face feels numb to the touch BUT only on the left side. I did not notice this when on capecitabine although I did have severe problems with the soles of my feet before they reduced the dosage But I have not been on Cap since last year and have recently been on Taxol for 4 and a half months. I also have a small piece of exposed bone in my mouth probably the result from being on Biphosphonates for years and as still having monthly infusions for bones. On FRiday I am going back to the dental hospital for some xray/scan and I have been on antibiotics for almost a month for an infection in the bone. I had terribe bloody, dry crusty nose on Taxol and thought the numbess I first felt was just because of that. But now do not know which of all the side effects is caused by what. I will be interested to see how you fare with a similar problem. I am pleased that the numbess does not affect me in any other way and am not aware of it unless I touch my face. At least food and drink and talking are not impaired!
Have booked a holiday and had to buy new clothes as NONE of mine fit from last year and I am becoming a bit too thin for my liking. I used to think I had too fat a belly and bum to look good in clothes BUT take that all back as looking skinny is not a great look either and would like to have a few more curves again. Planning on swimming on holiday to improve my muscles and my strength but first I need to buy a new swimsuit as the one I got most recently is afr too baggy now.I had a massive clear out of my wardrobe yesterday as I am hoping that The largest clothes I owned will not EVER fit me. Going shopping today and dropping of the clothes to the charity shop on the way. I did well thinning out scarves, handbags and loads of fancy clothes that I haven’t worn for years. I need to make space to re-fill with clothes that fit me now or WILL fit me later this year. I have filled 5 of the HUGE black bin bags so you can see what I mean! A job well done but will I regret it do you think? Love to all, Val
Hi Nina, I have the same problem with my left side only on my face. If I touch below my eye socket, down my cheek, along to my nostril and down to my chin, my face feels numb to the touch BUT only on the left side. I did not notice this when on capecitabine although I did have severe problems with the soles of my feet before they reduced the dosage But I have not been on Cap since last year and have recently been on Taxol for 4 and a half months. I also have a small piece of exposed bone in my mouth probably the result from being on Biphosphonates for years and as still having monthly infusions for bones. On FRiday I am going back to the dental hospital for some xray/scan and I have been on antibiotics for almost a month for an infection in the bone. I had terribe bloody, dry crusty nose on Taxol and thought the numbess I first felt was just because of that. But now do not know which of all the side effects is caused by what. I will be interested to see how you fare with a similar problem. I am pleased that the numbess does not affect me in any other way and am not aware of it unless I touch my face. At least food and drink and talking are not impaired!
Have booked a holiday and had to buy new clothes as NONE of mine fit from last year and I am becoming a bit too thin for my liking. I used to think I had too fat a belly and bum to look good in clothes BUT take that all back as looking skinny is not a great look either and would like to have a few more curves again. Planning on swimming on holiday to improve my muscles and my strength but first I need to buy a new swimsuit as the one I got most recently is afr too baggy now.I had a massive clear out of my wardrobe yesterday as I am hoping that The largest clothes I owned will not EVER fit me. Going shopping today and dropping of the clothes to the charity shop on the way. I did well thinning out scarves, handbags and loads of fancy clothes that I haven’t worn for years. I need to make space to re-fill with clothes that fit me now or WILL fit me later this year. I have filled 5 of the HUGE black bin bags so you can see what I mean! A job well done but will I regret it do you think? Love to all, Val
Hello Ladies,
Im new to this forum so forgive me if Ive posted this in the wrong place. Im asking on behalf of my 82 year old Mum who has bone mets in several places from her breast cancer which was originally diagnosed in 2008. She has three mets in her left arm and the hospital are supposed to be giving her a blast of palliative radiotherapy on them tomorrow. They put the procedure back by a day so that they could study her original notes (from a different hospital) because they wanted to know if there would be any overlapping of the radiotherpyi from where she had it last time. They phoned me today to say that there will be some overlapping but that they have decided the benefits outweight the risks. The young registrar who I spoke to was not very informative. I suspect hes quite new in the job because when I asked him what the risks were, he stuttered and stammered a lot and I couldnt get much out of him. He just quoted statistics for nerve damage - 10% in 10 years whatever that means. I asked him what form the nerve damage could be but again, he didnt answer my question. So Im asking here. Have any of you ladies had palliative radiotherapy (which is quite a high dose) on an area where you had your original radiotherapy treatment? I would have thought that if someone had had breast cancer radiotherapy, there would be a good chance that a bone met treatment might be in the same area. Im worried that my Mum might lose the use of her arm because if that happens, she won`t be able to live alone. Thank you.
Hi Sue - welcome. Can’t answer al of your question but perhaps some. My rads after initial surgery (WLE and all lymph nodes) were on the scar area of my boob, and the armpit. These aren’t probably the eusual areas for rads to secondary bones, cos most of those seem to be needed on pelvis and spine so not really a problem for most people I’ve read of. Will be interesting to see what others may say. Normally they say no repeat of rads where previously administered, but this is caveated by how long ago and what intensity. HTH.
Val - won’t say I’m glad to hear you have numb bits too, but as always it does help to know you’re not alone. Still no sight in left eye, tho no more tongue explosions which is a relief. Have now been to eye hospital who like optician can see nowt wrong with eye itself, which I spose I should be pleased about, but there’s obviously something amiss, and they’ve taken bloods and are doubling up on the oncology head scan to include the eye and its nerves. CT scan tomorrow but pm, so due to bank hol definitely not going to get results till next week - more scanxiety.
Afraid duty GP got edge of my tongue today. To add to my ills, th esteroids are having fun with my diabetes - sugars at 30+ today, and when she rang me back it was so clinical and condemnatory that I’d eraten a nut bar with my am steroid and had forgotten to insulin, I flipped and told her exactly what was going on with me, and apologised that I wans’t as precise with everything as I shoul dnbe and maybe she should try it… She mellowed a bit then … And maybe it did no harm - I keep my ‘face’ on for surgery visits usually so sometimes they don’t realise the quagmire that goes under the smiley face and laughter.
One thing my tongue incident has highlighted to me is the need for communication between upstairs and downstairs. I’ve always thought if I were unwell I could just call down - but having a tongue with different ideas and limited slow mobilty due to knee ligaments made me realise this wasn’t the case. It was pure luck I was just in panic mode when my OH came up to wake me. We’ve now got a buzzer system from Screwfix that I can buzz from anywhere and there are 2 sounders so he can have one in his office and one in the garage (his escape from my woes!). Might be worth othersw thinking about?
Thread’s bee3n quiet lately - I know a lot of us are having problems right now which may account for it, and in some ways the facebook area is more immediate for responses. I hope thread picks up and doesn’t fade away. Such a good source of info.
Nina
I am sorry to hear of the symptoms and discomfort of the recent posts here and hope they can be sorted.
I have had the results of my mri scan with contrast to lower lumbar and sacrum and its not good news. It has spread into the menange fluid surrounding and circulating the spine and brain. Apparently this is less than a one percent chance of happening in breast cancer. It seems the particles floating around in the fluid can settle anywhere hence the numbness and almost loss of leg use.
Am having another mri with contrast tomorrow afternoon for rest of spine and brain to see if any particle settlement there. I am to have radiotherapy on my lower back to see if i can get any leg use back followed by chemo that passes to the brain. I have been told any treatment is for pain relief and extra time to make plans.
Tamoxifen and zometa stopped and steroids and oramorph prescribed. Lots of calls from nurses and equipment arriving to turn my home into a hospital. Have had to tell the children.
TO SAY I AM PETRIFIED IS AN UNDERSTATEMENT !!!
Love to you all, Caron xx
Thanks for your reply Broomsticklady. Just for the record (in case anyone else is in the same boat as my Mum and the info might be of use). We went ahead with the palliative radiotherapy as I managed to get the info that we needed from the radiographers. There is a risk that the radiotherapy field might overlap into an old area where radiotherapy has been performed in the past. How many years in the past has a significance as the body is very good at repairing itself (growing new blood vessels etc). The radiotherapy field is accurate to +/- 1/4 inch so there can be some overlapping. Nerve damage can occur with this overlapping but the risk of nerve damage is 1 in 10 patients at 10 years. The 10 years is just the marker that they use in clinical trials. In this case (which involved the shoulder) the nerve damage can be anything from a little bit of tingling in the fingers to weakness and loss of motor function in the arm (worst case scenario). All in all, the benefits of this treatment outweighed the risks in my Mums case and she doesnt seem to have any problems so far.
Best wishes to you all
Suexx
Caron, I am so sorry to hear this news but I urge you to stay as positive as you can. I know that is far easier to say than do, but the radiotherapy and chemo are big guns in our fight against this awful disease. You will find strength in the days to come and we are all here to offer support and love. I am sure there will be more people coming on to share their experiences once they know which chemo you are going to be on.
I go to a secondary breast cancer support group every month and some people taking part have been through some poorly periods and had to change treatment or try new drugs etc, but they are now doing well once again. I know this isn’t always the case but treatments today are better than ever. Your team sound like they are on the case and being very thorough so let’s see what they come up with in terms of a treatment plan and then you will feel more settled.
I hope my words don’t offend you. Let us know how tomorrow goes and which chemo you will be on. Lots of hugs for the coming days x
Suzanne x x x
Dear Caron
im so sorry to hear of your latest scan results and am hoping there is more that can be done with the chemo and rads. Having recently had some changes with my mets and treatments that are available I do know how scary this can be and how awful the conversations with loved ones are. Supporting you all the way and hope you have better news from today’s MRI.
nicky x