Jo, having lived with this for far too long really (23 years) I have felt for most of those years there was little help out there yes - through primary treatments, many chemos, rads etc. and then the 2ndaries for the last 11 years. But then I ask myself what help would I have wanted...and I am not sure. For many of my years there were no forums .. no internet even to while away the time googling. I felt in the end you just have to get on with it and make of it what you will. Fight your corner every time and make it known what you want. Good people to talk to are few and far between. My macmillan contacts are lovely, they have done their best but I think I put across the image of a woman who can cope with anything. I am quite envious of those who have a lot of facilities on their doorstep at these places but I am not into reiki, yoga, and that sort of thing. My latest help has come in the form of a very expensive computerised pump implanted in my body and feeding morphine directly into my spine and I am pinning a lot of hope on that enabling me to do more - to being able to drive myself around and not depending on my hubby although he bless him will take me about.
What would you like to have in the way of help & guidance?
Hi all im just watching the best watch on tv for a saturday night CASUALTY as if we dont have enough of hospitals...... i feel Im an expert now on lots of mediacal issues lol. I am new on here and have buried my head in the sand for months now not able to face and understand whats happening to me. Thats not to say I havnt faced the fact that I am dying but what i havnt faced is the fact im living, during chemo you are busy doing a job so people are amazed how well you cope, its now im stuggling, its the lack of info out there. Work are retiring me through ill health and ive just gone along with it because the doctor says too i need to do everything I want to do .....inferring you dont have long. So here i am floundering waiting , wondering what happens next...Then I see on here the positiveness and amazingly the strngth and determination of you lot to cope with this and live. there is not a lot of help and guidance out there I have found.
Hi Buffy, i worked in the health service but I think because it is a public service many of the terms and conditions are similar.
I think it is extremely difficult to say when it is the right time to return to work after chemo because each person is different. Even thou i worked with children I worked during chemo reducing to part time. this was after a primary diagnosis and I think receiving a secondary diagnosis is different in many ways because there is less sense of getting over it and moving on. I then took time off during radiotherapy. Other people have a very traumatic time during chemo and need much more time to recover.
I have had a phased return to full time both after my primary and my secondary diagnosis.....i think over about 6 weeks but it was negotiable and it was possible to extend it my incorporating annual leave accumulated during treatment. Not sure if that is the same in education.
HR were helpful....especially in guiding me through ill health retirement......I think i guided Occ Health telling them what I wanted.
It is possible to rtake ill health retirement at any age.....it depends on meeting the ill health retirement requirements...these are probably available online...health ones certainly are....why not ask your union. ill health retirement usually involves an enhancement of wht your pension would have been without ill health and less or no reduction because of your young age. ie if you get ill health retirement at 42 (in the NHS) the number of years pension you would of got at age 60 is calculated and 2/3rds of them added to your pension. eg if you have been working since age 20 you will have accumulated 22 years pension. If you worked to age 60 its an additional 18 years. 2/3rds of this is 12years so you would get a pension as if you had worked 34years.
If you have a "terminal diagnosis" and a limited life expectancy you may be able to take all of your pension as a lump sum without affecting survivor benefit. again you should get advice as to the best option for you.
Hello, I hope you are all having a great Saturday. As you probably know I have now finished EC chemo...phew! Anyway I have been told by my onc that I should be able to return to work in 8 weeks...part time. I am a deputy head teacher in a busy environment and I am looking forward to getting back to some sense if normality (whatever that maybe). 8 weeks seems soon to me...I am still very tired a weary, although I am still feeling the side effects of chemo. I also have had a difficult HR meeting prior to me knowing I needed chemo...infact I was planning on returning. As a result of that meeting I contacted my union who are now going to support me at any future meetings. My head teacher sent a letter requesting I go to OH as they are organising staffing for next academic year (she sent a letter prior to that to say any meetings would be at my request!)
My questions are:
How soon have people returned to work after chemo?
Have you has a phased return?
Have your place of work been supportive?
Have HR conducted themselves in the appropriate manner? (my HR dived straight in and mentioned dismissal, early retirement)
How tired have you felt after chemo? When did you start to feel better?
How long can a phased return be?
I am 42, is it possible to have early retirement at this age? Dont really want to but useful to be aware of options.
I am likely to be starting letrazole and zoladex soon, how will se affect me?
I am sorry about all my random questions but I just want to ensure I do whats best for me and mmy health and also do right for my school.
Any comments welcome, anyone elses experiences are welcome. Thanks in advance
There doesn't seem to be a set plan for secondary (or even primary) BC and that's because we are all different and we may react better to some treatments than others. After my secondary dx I had 6 lots of FEC chemo then went onto hormone therapy which kept me stable for nearly 5 years. I'm now back onto oral chemotherapy until that eventually stops working. So, as you can see from the replies you've already had there is no set pattern. If you are going with Mum to her appointmetns you may want to ask why certain decisions have been taken. Most of us are on bisphosphonates at the beginning of either chemo or hormone treatments so you may also want to ask if there are any reasons for this not to be happening at the moment. As LemonGrove has said maybe they are waiting until after the radiotherapy benefits are seen. Good Luck
KJH1980 With regard to your Mum's treatment regime. When your Mum was originally diagnosed with stage 3 hormone receptive BC, she would - after MX and rads - been put on endocrine therapy to try and prevent a recurrence (and you say that she was on Anastrazole). The reason she has now been put on Exemstane, is because Anastrazol has now failed (hence progression to the bone), and so her doctors are trying another form of endocrine therapy (which works differently), to see if this has any effect. If it does then I guess they will probably keep her on it, but if it doesn't, then it appears they have a plan B (Taxol ).
I think the treatment she has been offered is pretty standard, as most people with oestrogen receptive secondary BC are offered endocrine therapy before chemo. Having said that some doctors believe it is better to give chemo first (mine for instance), and sometimes if cancer is progressing very fast doctors will often give chemo first, because endocrine therapy can take a while to kick in. With regard to why they have not put her on bisphosphonates straight away (bone strenghteners), it could be that they want to see what effect radiotherapy has. Obviously if she was put on bisphosphonates prior to RT this could distort the results, and it would be difficult to assess how her cancer reponds to RT.
Hope this helps you to understand the treatment plan proposed, and best wishes to your Mum for a successful outcome.
So sorry to hear about your Mum.
When i was diagnosed i posted on here and had the most amazing support from everyone. When your Mum is ready it would be really good for her to come on and touch base with us. Some of the ladies on here are a mind of infomation and are an inspiration.
I agree there is a lot of different combinations of drugs and i am sure a lady on here responds to you and puts your mind at rest. I am sure your Mum is getting the best treatment plan .
Take care ,
Hope you don't mind me posting - my mum has just been diagnosed with bone mets so I've been reading as much as I can over the past week and have been really comforted to hear a lot of your stories.
Obviously it's a bit different for me as I'm not the patient, my mum is. I've mentioned to her that there are forums such as this one available but I don't think she's quite ready to go there yet. For me, as you can imagine, I'm still in shock. Mum was diagnosed with grade 3 left bc (er/pr+, her2-) pretty much exactly 4 years ago, with 4 out of 11 positive nodes in the lymphs. She had a lumpectomy, then a mastectomy and lymphs removed, then chemo and then rads, and then went through all the reconstruction. Her most recent op was a lipofill just before Christmas. So none of us were expecting this. But she started to develop aches and pains which we could no longer just put down to arthritis (mum's just turned 60), and when she was rushed to hosp with hypercalcemia after a blood test a few weeks ago the truth was pretty unavoidable.
She has tumours in her spine, ribs, hips and sternum, and 2 compression fractures in her spine (it is just devastating to think how long she has been walking around with a fractured spine and I didn't realise). She's now home but still in a lot of pain. She's been put on exemestane (was on anastrazole) and is having a week of rads next week, then being put on 18 weeks of taxol from the middle of march, and then bone strengthening after that. It's obviously great that she's being treated and quickly but there seem to be so many combinations and orders of treatments out there and I haven't managed to come across any quite the same as mum's. A lot of what I've read seemed to suggest she would be having hormone tabs, rads and bone strengthening first and then chemo later on, so I'm not really sure what to think about the way they're treating it. I'd really like to know about other people's experiences.
Sorry, I seem to have gone on a bit here. It just helps to get it all out I guess!
Heather, as Nina says, it sounds like a nuclear bone scan. As well as avoiding young children, you are not allowed to hug any pregnant women for 24 hours. The scan bit, if they do the whole spine, takes about 30 minutes. The results can come through quite quickly, but it depends on how soon a radiographer looks at the pics and how soon you get to see the onc. I hope it all comes back clear for you. The quick appy may just be that the hospital dept isn't very busy, so try not to read too much into it.
Verity, from what I have seen, Denosumab seems to be an alternative ibandronic acid tablets. I am still on the tablets and I think they (or something) is helping, as I am cerrtainly getting alot less pain now than I was. I am down to 3-4 slow-release morphine tablets a day and 2 paracetemol at bedtime most days. If I over-do it I do need an extra paracetemol or 2 and if I know it is going to be a busy day, I will have 2 morphines in the morning instead of just 1.
I am getting closer to making a decision on whether to continue working. I had my annual review with my boss yesterday and while he understands that I can't go out to visit customers at the moment, I am not sure that he comprehends that this is a long-terrm illness. My job should include visits to customers all over the country (and potentially the rest of Europe). Before my initial dx I would often be away from home for 1-2 nights a week. Now, I really don't want to do that (even if I could do the travel) as time feels so precious with my daughter. I also don't want to be using my energy on the travel.
So, unless we can find a role that doesn't involve much travel, I may well be retiring soon. My boss (who has only been my and anyone's boss since last October) also finds the concept of part-time work alien, so the idea of reducing my hours from the 3.5 days even further went down like a lead balloon. We will see what the options are (I might actually meet my boss next month) and see what is possible. Also I need to work out what the long-terrm effects of the capecitabine are.
Hope everyone is keeping well
Heather - I'm with Nina on this one. It sounds the same as a nuclear bone scan and works as she describes. Think the time from scan to results depends on the area and staffing levels at the time. Sometimes mine have been reported the next day and other times it hs taken nearly a week.
Verity - sorry can't help really other than to say I was on arimidex and zometa for bone mets for a long time. Hope you get someone else who can help a bit more
I can't keep up with this thread!! Heather - I think your isotope bone scan is the same bone scan most of us boney ladies have with comparitive regularity. It's not a hard one to cope with - you'll have 2 appts, about 3 hours apart. the first will be to inject an isotope into a vein, so no different to a blood test if you do them OK. This will mean you can't go near young children for 24 hours but has no other visible effect. You'll then go back, lie on a flat plate thing and a machine will go from head to toe - you have to keep still for that - and then you're free to go.
Hope this helps
Sorry no more - husband having work crisis and he needs me!!
Hi everyone ive just logged on here...hope its ok just hopping in. Im intigrigued reading about this new drug your talking about for bone mets denosumab....i was diagnosed last march with secondary liver and bone mets have had chemo last year which keeps your mind busy but Im struggling now getting my head round it all and living with it. i had oncology check up this week which having had no scan couldnt update progress which at last scan last year showed no movement in bones and reduction in liver. I currenty am on herseptin and Lemetozole... anyone else similar to me who can advise on their coping stategies ..
Hello everyone. I don't post very often but am hoping for some advice from you. I was diagnosed in June 2012 with adenoid cystic carcinoma ( a rare breast cancer - I am still trying to find someone else who has had this so I can ask their advice about treatment, etc) I had WLE and SNLB and 30 sessions of rads. At Xmas I had biopsies taken again as onc thought there might be another lump but this turned out to be scar tissue. I have had shoulder pain since before the cancer but am now having lower back pain which is severly effecting my day to day life - when I wash the pots or make a meal I have to keep sitting down every few minutes due to the pain and am walking very slowly but have to keep walking or sit down because when I stand still I am in even more pain. I saw the onc at the end of last year who said that the pain couldn''t be anything like bone mets as I had had a ct scan and this hadn't shown anything up - the ct scan was to check nodules I have on one of my lungs, which the onc also said were fine, but in breast clinic they want me to have a repeat scan in June as one of the nodules has grown.
My GP referred me to rheumatology who I saw last Tuesday as it was a possibility I have arthritis. The rheumatologist now wants me to have an isotope bone scan because of my history but is hoping that I will just need physio. My appointment is on Monday - worried now because the appointment has come very quickly! Can anyone tell me what the scan is like and how long should I have to wait to get my results - I am really worried now but am at the stage that I just want to know what it is. I would be very grateful for any advice. Hope that you are all doing ok.
Thank you, Heather x
Yay!! Been to hospital today for bloods and funding is through for the new drugs!!! Came home clutching a bag of very expensive everolimus and exemestane and go back tomorrow for denosumab jab. Excited I can now start blasting those evil cancer cells again!
Thank you for the info and i have had a look at your thread Nicky about the drug .
It is good that you have no side effects jojo, i got the impression that my consultant left it in my court so to speak about me taking it. I did tell her that i felt so achy , in the mornings when i first get up and some days my bones ache a lot. That was when she started talking about denosumab. Should i push for it? or keep it as ammunition if/when i need it?
Hi LizH, I have been on denosumab for 7 months, its a small injection into tummy, all over very quickly and have had no side effects, my latest scans have shown bones healing and I have very little pain now, not enough to bother with pain killers. Hope this helps, good luck
Great to hear the 'S' word again :-) Must be a relief even if you weren't expecting any results. I have just started denosumab but as far as I know your oncologist has to apply to the Cancer Fund before prescribing it as its not on the NHS as such just yet. Having said that I think everyone who applies does get it. There are a few of us on it but its early days so not a huge amount of feedback Or advice at the moment. I've started a thread on this in the Secondaries treatments and medical issues part, I'll bump it up for you.
I had my appt with consultant today , just a chat as i had no scan results to wait for (thank goodness).
We did talk about the new bone strengthener (denosumab) and how it was now on the NHS . I would love to know what people think of this new drug -and if anyone is on it , side effects ect . I am on ibandronic acid and arimidex since diagnoses (April '11) and am please to say stable .
Best to all
Thank you again L, I was hoping to watch it and get any names mentioned. I haven't previously looked at bbc catchup tv so thanks for pointing that out to me. Incredibly frustrating, especially as I'm dealing with the first cycle of Xeloda and all that entails at the moment. The last thing I need to deal with a government department almost doubting whether I have secondary BC at all, or maybe I just got better?
Nicky 08. The item on Saints and Scoungers was about a lady clled Pauline. It was on Series 4 episode 6. If you go to BBC Catch Up TV in a few days you will be able to watch it (it's not currently available).
if you watch the programme, get the name of the Macmillan Worker who was dealing with it,, and got the DWP to issue national guidelines, she would be a good person to contact.
Just a quick update on the whole DLA/DWP fiasco, sorry if I'm boring everyone but it could affect any of us at some point.
After the information about the tv programme and MacMillan's help I phoned the advisor I had already spoken to about my claim. She knew nothing of these guidelines, neither did her manager who called me back and spoke at length - very cautiously as I'm sure the conversation was recorded! So, back to square one. I have already lodged a reconsideration of my claim but have been told I need to supply new eviddence as they will base it on what they have and that doesn't qualify me for DLA. Hmm, a list of medications for secondary bc, atrial fibrialltion and a long letter saying i was currently undergoing tests for aches in my hip/leg? I am seeing my GP later this week and, considering my recent progression in bones and now liver, will ask for a DS1500. Worryingly when I mentioned that I may get one from my GP the DWP manager said that doesnt mean you will get DLA. Also, my award in 2008 was 'indefinite' however the manager said only those awarded DLA before 2005 would actually have that benefit indefinitely, all others will be reviewed.
If anyone can get me a link to watch the Scroungers programme I'd be grateful. It's no longer on bbc iplayer and its not on YouTube. Any other tv websites anyone knows of that might have it? It was shown last Tuesday I believe and I could kick myself for not watching and recording it. Grrrrrrrr.
Sorry about the me, me, me post, rant over.
Dawn - glad your braveness in going for your op seems to be paying off - so pleased. Amysmum - I've been told by several people that paracetamol eases the path for morphine of whatever type, so altho you feel good reducing a pill, its not the one to reduce.
DLA - I did a quick questionairre on the DWP site as to when my DLA would be looked at - it was indefinite about 18 months back, and the answer I got was 2015 at earliest which encouraged me - my onc wouldn't DS1500 me.
Ref sec BCNs, I'm just using my old primary one when I need something. She seems quite happy, hasn't told me to go away, tho I don't contact her much, mainly recenetly to get me an early informal scan result service!
Currently floored by a sport injury!! Feeling so much better thanks to Cap I decided to try and up my fitness a bit. 5 minutes on treadmill at 3.5 kph so nothing major one day, 7 minutes the next, equalls 2 weeks pain and hobble. REfused to see anyone in case they hospitalised me, but slipped on kerb on Friday completely screwed me and I couildn't take weight on either leg - had to get chair to get me across road which is all I was trying to do in the first place. Pain got worse - stairs were effort of will - and Sat saw me in A&E where damaged knee ligament diagnosed and now on spilnt which does help[ but try going to loo with leg which won't bend - and then get up again!! a challenge indeed!! Cope with cancer fine, kinkky ligament floors me - no sense!!
Liz hope you and the ladies all enjoy your meet up in Liverpool tomorrow.I had hoped to make the London one this week but did not fancy train travel with crutches.
Not sure how cold it is here as still in bed.I have something on most days this week so need to build up my energy!!I have a macmillan meeeting tonight so will have to tackle some ironing as have nothing to wear not in the ironing pile.
Val - hahaha, you don't get rid of me that easily!!! When you said the time you had the patch on and that you could cut it up, I realised it was the other patches you were talking about. Hope the blood transfusion if needed gives you some energy back. I'm reading a Ken Follett at the mo - The Man from St Petersburg. Quite easy going, although it is in proper book form not on my kindle.
Dawn - delighted to hear things seem to have worked out with the implant and am sure you have had the most wonderful time with all the family.
I'm out for tea tonight with some ex-colleagues - happy hour menu at an Italian so that will be good as it's not a later do. Have the Liverpool get together for a couple of hours tomorrow so looking forward to seeing some of the girls from here.
Take care everyone and keep as warm as possible. Apparently it's freezing cold here but I've not ventured out yet....Liz xx
Val I am sorry but I felt as we had been talking about fentanyl patches it might have confused someone - to me it was obvious you were talking about lidocaine but others not familiar with those drugs might have been confused. I hope we all care enough about each other to not think I was being critical .
I think the operation as I feel right now has been a success. It still needs a bit of tweaking but I am going most of the day without pain. It is early evening/night I am having trouble although last night I did get off to sleep and stay asleep all night. But what I think is so important is that I really feel I have my brain back LOL sorry if I have already said that! but it is a fantastic feeling.We are having a lovely weekend with my daughter, her OH, and the twins + their bigger brother.
Gosh, I haven’t been on for a couple of days and the thread has been busy! Taken me a while to catch up with all the new posts. I’m sure I won’t remember to mention everyone individually but you are all in my thoughts.
First of all welcome to any new members I hope you’ll find the thread as helpful and supportive as I have. Lin, my heart went out to you when I read your post, I do hope you have already found some comfort in the support here. You know we’re not all really brave, we’re just like you, just getting on because that’s all we can do, you’ll get your head round it eventually, it sounds like you might be depressed at the moment too, maybe a word with your GP would help. I’m actually clinically depressed and have been on medication for years – it does help.
Buffy glad to hear the chemo seems to have done it’s job and hope your maintenance regime will be as effective. Sorry HR meeting was difficult, don’t be pushed into going back too soon, could you take a union rep or someone with you to the next one?
Nicky I hope your appeal goes through quickly and you get your DLA back. I recently had to renew my application and was really worried as I’ve heard of people not getting it thankfully it has been renewed, so fingers ceossed for you but we really shoildn’t have all this extra stress! Lemongrove, thanks for that info,lets hope it filters through to all the DLA staff. Of course you’re not going anywhere for a long time – we need you!
Amysmum hope you haven’t picked up the chickenpox! I can understand you’ve probably got mixed feelings about the wheelchair but it will make outings easier. Lucinda, hope you manage to get out on your scooter, I’ll keep my eyes open for you when in your neck of the woods!
SL, good to hear the markers are going down at least the Se’s have not been for nothing! Hope the arm pain continues to improve. Have fun looking for your new car!
Hope all my boney friends have a good week, lots of love xx
Dear Dawn, I am glad you are on the ball and corrected my error. It has been a while since I had the Lidocaine patches but I was also on Fentanyl tablets around that time so that is where i went wrong. SO pleased that you noticed my error before I killed anyone! Especially as you must NOT Cut the other patches up! Perhpas I should keep quiet in future! I blame my chemo damaged brain but that is just my get out clause. Sorry everyone!
Hope your new chicken recipe turned out well. I opted for a crispy baked potato with sour cream and grated cheese and it just fitted the bill. I could not face any form of meat and I did have home made soup and fresh fruit salad earlier today. Let me know what car ytou choose Lynn, We are just starting the search. I cannot be bothered really but my husband loves everything to do with cars so it was his idea to try a different one out. We have to order one that can tow our caravan and we have a Renault Grande Scenic at the moment which has been a great car but you need to look round because there can be a hefty down payment to be made on some models and these change every threee months I think. A list comes out.
Not been feeling 100% today but I know my HB is going down again so it may just be that. Will know on Thursday if I need another transfusion. I felt cold to the bone and just out of sorts.
Dawn I hope things are improving every day for you and that the pain is under YOUR control now. V]Can you give us another update sometime/ Take care all and sorry for confusing the patches Liz. Val
Thanks for that Val and yes it did sort of make sense.I take 2 300mg (so 600mg) gabapentin 3 times a day. I have started just taking one 300mg pill at night as I also take my MSL at 11 pm and then I sleep throught the night,also seems to work better taking my first MSL mid morning as I also have to take blood pressure pill am.The MSL seems to be working well so am hoping I can reduce the gapentin withou the spine pain coming back.Will be pleased when I get my mri so they can find out what is causing the leg pain...I am hoping it is cancer so they can blast it with rads.If it turns out to be arthritis and they decide a hip operation is needed I will be back picking your brains again!!
I am also on a car hunt as I need to order a new one April/May but I need to get one that will take a hoist.I purchased my mobility scooter Friday, and although it comes apart I would never be able to lift some of the parts myself,and I want to be able to go out alone shopping and be able to use theb scooter.Tried it around the area I live today and it is really frustrating because ther are hardly any dropped curves so I had to keep lifting the scooter down manually,back really ached by the time I got home.I think I might be making a complaint to the planning office.
Enjoy your reading.I am planning on cooking a new chicken dish tonight as I have not done much cooking lately and OH tries his best but is a bit limited,the book shop had a sale on so came back with more cookery books...well the illustrations made me feel hungry and reaaly got no appetite since starting new chemo drug.
Nicky so pleased you found out the cause of the exhaustion,it is upsetting when you take something to make things better and it causes other problems. My remedy for nausea is to eat liitle and often.I really hate having nausea but anti sickness pills always give me the runs and I can't run very fast at the moment.
Hope all boney ladies are having a good day..its freezing cold here.
Regarding pain can I just say that I think Val is talking about Lidocaine patches as she mentions 12 hrs on/12hrs off and it is correct that you can cut them up. I found fantastic relief from them when I had the burning sensation on my thigh. But the other Patches that Lizcat is talking about are completely different and you must never cut them up. I have used fentanyl patches and the lozenges for breakthrough pain which did help a lot but after long term use do need more and more to achieve the samre effect. Be careful with the patches liz - I adjusted really well to them, and quickly, but I had been on morphine before them. I think you mentioned you are on quite a small dose patch so I would be really surprised if you had any ill effects, but then we are all different. Hope Val you don't mind me clarifiying about Lidocaine patches.
Lis, I was neither up nor down with the patches. Did not make me sleepy or anything. No side effects at all but told to wear for 12 hours and off for 12 hours every day. I do not think you need to delay trying them. Easy peasy.
Lucinda, I do not know the dosage of Gabapentin you are taking. I was on 600mg twice a day until I needed to increase it to 600mg three times a day. Weaned myself off using Gabapentin 300mg tablets, the smaller dose so that meant I took 600 then 300 then 600 in the day.. Just took 300 mg for a few days and when that seemed to do the trick and the pain was fine I missed out that 300mg pill. It is up to you really depending on what mg of pill you are taking. If you like to take it three times a day you could drop the dose for a few days on any of the three dosages. (hope this makes sense). I would not rush at it but you should know yourself if you can manage without the pain coming back.If I have confused you just say and I will try to explain again!
Nicky the name of thre antisickness pills I take are called Domperidone 10mg. I wonder if this would suit you better?
I have been reading another Ken Follett book called "A Place called Freedom". A great book if you have not read it yet. I couyldn't put it down and an easy read. Hope you are all okay. Val
Val - I am so delighted the chemo and pain meds seem to be working for you. It makes it all worthwhile in that strange world we live in! Liking your forward planning for a new car. Remember colour is very important!! I was the one who mentioned patches. I have managed to get some fentanyl ones from the GP but haven't used one yet as they have to stay on for 3 days and I am out tomorrow to catch up with friends and then have a BCC meet-up at Liverpool on Tues so don't want to knock myself out with any side effects yet. Will probably slap one on Tues night.
PS I saw that programme about benefits and thought it was all a bit odd. I had a review form to fill in last Oct in advance of a review due about now. I filled it in, got the DS1500 and my automatic renewal came through within a week. I was a bit amazed at the speed but delighted nevertheless
Hi Val -Great news from your onc :-) It makes all the difference when your treatment is harsh that you can see that it's doing its job and blasting the uggers.
Cant help on any of the pain meds questions but I may be asking a few myself in the next few weeks as my back has started aching badly yesterday. I know it's the region where the new spread is so I'm hoping its the denosumab doing its job.
By the way my complete exhaustion, to put it mildly, has been caused by the anti nausea meds not the Xeloda after all. I was taking metachlopramide, which I took back in 2008 with no ill effects that I noticed, and this time I was getting the 'rare' SEs that they list, which I don't think are as rare as they think seeing another thread on here. Worryingly I had been told I could take twice the recommened maximum dose per day by the hospital pharmacy sticker on my pack. I'll be taking that up with the chemo ward when I next go in! Feeling much better and have had a v slight reduction in Xeloda dose after a chat with my onc on Friday when I was so desperately unwell. Only problem is I can't take anti nausea tablets at the moment as they all seem to indicate a problem if you have arrhythmia, which I do have, brought on by FEC 5 years ago.
Hope all secondary ladies are keeping well - and warm, snow has returned to Hampshire.
Hi Val so pleased with your results and pleased you are managing to reduce your pain meds.Can I pick your brains about gabapentin.I am hoping that now if the new chemo drug starts working,along with acupuncture,that I will be able to reduce my pain meds,probably gabapentin.I am taking 20 mg slow release morphine twice a day and gabapentin 3 times a day.I am really pleased with how the MSL has worked,it does not bother me at all and the bone pain has decreased (apart from my leg which is why I started it in the first place). My gp said I should not stop taking the gabapentin but reduce it gradually...I want to reduce the dosage as much as possible but how slowly should I do this?
Glad to hear you sound so much more positive Val. It sounds like the Taxol and Morphine are doing their jobs.
I agree with you about Oramorph. I had some before my back surgery and it is great if you want to go for a little lie down for a couple of hours. I am on the slow-release morphine and can function pretty well on it. I have upped my dosage to 20mg twice a day and I have pretty much dropped the Paracetemol completely. On just 10mg, I was on 8 paracetemol a day as well.
For some reason, morphine seems to be the pan-killer of choice in Ipswich. Oramorph is given out like sweeties on the wards in hospital and when I saw the GP last week she almost forced some more on me. It is good to know that there are lots more options out there for if and when I need more.
I wrote a post here yesterday but it seems to have disappeared. Try again....
Good news from my Consultant yesterday that both my tumour markers CEA and Ca125 have reduced with my weekly Taxol chemo so have to continue with treatment. I have had 11 so far and so just 7 cycles of this chemo ahead of me now. The pain in my arm has much improved since my radiotherapy 10 days ago and I have managed to wean myself off the middle of the day Gabapentin. The pain does return occasionally so I just take some more Gabapentin BUT the pain is no longer constant and some days I do not need all the pills at all. My HB is going down again since my recent blood transfusion but the Oncoliogist says it is the chemo that it causing it not my bone mets as many people on Taxol need blood transfusions and do not necessaril have bone mets. So my chemo ward will keep an eye on things and I will have yet another transfusion if necessary in the next few weeks.
Someone mentioned the pain patches. They can be worn during the day OR during the night depending when the pain is worst for you. But in it very important that if you go into the bath/shower that you remove the patch as it can be dangerous if you wear the patch in the bath, cannot remember who told me this. But the patches are great and you can wear them in different areas of your body at the same time. For instance if you have a sore buttock and a sore lower back you can have 2 patches on. You can even cut them in two if you want to. I used to use them but have not needed them recently.
I much prefer slow release morphine tablets twice a day, to the Oramorph. But if you have a breakthrough pain Oromorph can really help yuou cope. But when I use MST I do not feel at all odd and can drive and do normal stuff, but Oramorph makes me sleepy but is has got me through really really bad breakthrough pain that has had me crying at times. So each of these drugs and patches can help with different sorts of bone pain.
Hope everyone else is okay. I am away to try out new Motobility cars it the weeks ahead as I am due a new car in a few months, provided nothing changes with my DLA of course as I must be due a review soon. Not looking forward to that and all the hassle and worry that it can cause until you know where you are. Don't need this added stress when we are dealing with all this other stuff. I cannnot believe the huge variations betweent he wealthy and the ordinary people these days. I know you will know what I mean and do not want to enter into a political moan but things are not looking good for the disabled and elderly and sick people in the country yet the rich seem to be enjoying reaping the rewards that come their way. End of sermon. Hugs Val
Hi LG thanks for that info , you are the fount of all knowledge ;-) I didn't see the programme but probably should have. I had a general renewal notice which is the one listed previously on here (somewhere) saying it was the one used for re Assessments. Thinking about it when I first applied they lost my DS 1500 and I was originally refused DLA but got it all when I sent them a copy. I will get in touch with Macmillan, they have just set up a financial service at my hospital so I can get bloods done and a financial check at the same time!
Nicky08, re your difficulties with DLA. There was a television programme recently (called Saints and Scroungers), that was about this very topic. A woman who had received DLA under DS1500 for three years had been asked to re-apply when the three year period ran out. She was then declined (they said as she had survived for three years she was unlikely to pop her clogs in the next six months), and told that she would have to apply under the new arrangements (essentially they were going to assess her capability for work).
As a result, she took it up with Macmillan, and Macmillan approached the Department of Work and Pensions on her behalf. The DWP responded by saying there had been a mistake, and that one of their employees had misunderstood procedures, and that her claim should just have been re-newed. Anyway, Macmillan then looked into things a bit more, and found they had received numerous complaints about this, and that it appeared to be a widespread problem, so again Macmillan took things up with DWP. The outcome was that DWP issued guidelines to all it's staff that DS1500 claims should just be re-newed and that claimants should not be subjected to work capability assessments.
Given that is the case, I would suggest that you get on to Macmillan, and let them know what has happened so that they can take it up with DWP again.
I do suspect this is a postcode problem though, because I re-newed my DLA claim under DS1500 rules recently, and had no prolem whatsoever. When the three years were up they sent me a form asking if I wanted to re-apply. I completed the form and asked my GP to complete another DS1500 form and the DWP just re-newed straight away with no queries. Mind you, as I have gone straight from bone mets to brain mets, they probably do think I will be gone within six months (but while there are treatment options, I have no plans to go anywhere yet).
Hi thanks for the supportive comments about my DLA. I've had it since 2008 on a DS1500 straight after my initial diagnosis of mets when no one knew where I'd be in 6 months. This has come through as a review, which I think everyone will get, as my original award was indefinitely. I have already lodged with them that I want it reviewed and will be hopefully getting a my GP to do what's ever necessary next week to get it reinstated. If not its onto appeal! I was surprised they didn't give me any mobility allowance at all even though I told them I was limping! All of which has turned out to be mets progression anyway. Grrrrrrrrrr
Hi to NannieSpiky, another Liz. I'm not actually at S'ton but at one of the hospitals that the oncologists have clinics at in Hants, so we will all probably have the same team, just different locations, and still no SBCN!
Hi to all newcomers especially ponsmuir, our latest 'recruit'. As the others have said we are a supportive and informed bunch of ladies who help out as much as we can. Do ask any specific questions about things that are worrying you and keep in touch on a general level as well, we do talk about things other than bone mets - well, sometimes ;-)
Gosh this has become a busy thread suddenly.Welcome to all new ladies and sorry you have had to join us,but as all the other ladies have said we will help all we can with support.
Dawn so pleased they have got your wonder machine doing it's thing.We will all be following your progress with interest and wishing you a speedy move towards pain free days..and nights.
Re pain when my right leg recently decided it did not want to walk any more my doctor upped my gabapentin and changed my cocodemol to slow release morphine and i take 20 mg twice a day.I have been very loathe to take morphine and stalled,the hospital had given me oramorph for back up pain but I ahd never used it.I have to say the change to the slow rease morphine has been great,it has not affected me in any way,other than helping me sleep as I take the second dose at bedtime,and I am vitually pain free except for my leg which was the reason I was given it in the first place.
Sue sorry to hear about Amy,chicken pox is nasty for little ones and I really hope it does not affect you in any way.Since starting my new chemo drug I try to avoid anyone with any type of bug,give people with colds a very wide birth and contantly use alcoho gel on supermarket trolleys..even open doors with a tissue in my hand.Hope you enjoy your new chair,I bought a mobility scooter today that comes apart and fits in the boot..just waiting for it to get a bit warmer so I can try it out - absolutely freezing here today.I was getting really fed up not being able to get to the beach..we are only a five minutes walk away but it felt like miles and driving is just not the same.
Mel I have to agree about our lovely BCN,she has been a lifeline to me recently.I think it is something all secondary ladies should have access to but I fear that is a long way off,We should start a campaign.
Hugs to all my boney friends xx
Nicky when I was originally turned down for DLA I appealled,sent them copies of all my prescriptions,every hospital letter,copis of all scans and asked them to write to my oncologist.Don't know what made them change there mind but I was granted it indefinately.I know of 2 ladies who have had to fill out new forms recently,did it via DS1500 and it was approved so I think yours must have been looked at by someone having a bad day..don't give up and let them get away with it.The macmillan lady at our hospital is really good.
Hello Lin, Susan and Helen. Sorry to hear you have had to join our merry band. I only got dx with secondaries in October, so it is all quite new to me too.
Susan. sorry to hear you are having to wear a brace for your spinal compression. I had a single vertebra squash on me completely. On one MRI it was about the same thickness as a disc, but digging into my spine. I was lucky (!) that it was just the one and my local hospital (Ipswich) has a good (and brave) spinal surgeon who was happy to do a reconstruction with a couple of Titanium rods and pins on the 2 vertebra above and the 2 below. I guess if they had been dodgy too that wouldn't have been much of an option for me. He was thinking that without the surgery I would be confined to a wheelchair within days, with possibly no use in my legs. Walking or standing for too long (more that 10 minutes really) is no fun, so I have crutches.
Nicky, I am shocked that your DLA has been stopped. I had been led to believe that it was pretty much automatically given for secondary BC. My BCN (she covers primary ans secondary ladies) sent my details to a MacMillan guy who works for the council and he filled out the form for me. He only called me to check my NI number, my bank account and how many toilets we have (not sure why he needed to know that one). I got my DLA through in less than 2 weeks. You should contact MacMillan or your council and appeal the decision (or re-apply).
I am not sure whether I should be worried or not. Amy has gone down with Chicken Pox. I am pretty sure I had it as a small child, but I have had to cuddle her, apply lotions etc. I talked to Nurse at the hospital (not my BCN as she is on holiday this week) and she was very relaxed about it. I then saw my onc on Thursday, when I had the blood tests and the chat about how the first Cap cycle had gone. He asked how Amy was, so I mentioned the Pox. His reaction was much more alarming, as if I am not immune (and a few people get it more than once) and get it, I have to stop the Cap immediately, call him and get some anti-virals, as I could get some nasty internal blisters that the Cap would react with to make worse. Oh well, best hope I am immune then.
I have had a busy (and accepting) week. I got my DLA letter through, which kind of makes me realise that I must actually be poorly. I guess not being able to walk to the end of the road without pain is pretty major, but for as long as I can drive I can get about. We were out for the day last Sunday and I did more walking than normal - only round a shopping centre with lots of sitting, but I did feel it by the end of the day, especially as a couple of seats weren't good for a reconstructed back, So today we bought a light-weight wheel chair (spending the DLA before I get it ). We did borrow one fromt he red cross for a few weeks last year, but actually buying one does imply a permanence to the situation. Still, when the weather improves, it will make days out that bit easier.
I hope everyone has a good weekend.
I am based in the Royal Marsden...my secondary bcn is just for us bony ladies. I would be lost without her...plus we share our name...I really think that this needs sorting for secondary ladies everywhere.
Have a good weekend, I am still feeling the effects of my last chemo...feel so tired plus a headache has decided to join in for good measure. Sweet dreams. Mel
Dawn - thanks for your words of wisdom yet again. I have the patches in my possession and thought I would put one on before bed in case it knocks me out or anything. I have been given the lowest dose ones - 12 mg - as recommended by the hospital. I hope you are still getting a lot of benefit from the implant and are managing to get the dose right now.
Mel - lucky you having a secondary bcn!!!! They are a very rare commodity from what I understand. Part of that I think comes from the fact that numbers of people with secondary bc have never been collated so the powers that be who decide staffing resources have nothing to work off. BCC are working to rectify this but it will take a long time....
Hi Everyone and to the new ladies, sorry that you have had to join us but as the others say you will find a wealth of knowledge and support on these pages.
Dawn, I wonder if I could pick your brain regarding painkillers, with your experience you have more knowledge than my GP! I was diagnosed with bone mets in 2006 but after initial treatment with radiotherapy they have only become troublesome in terms of pain during the last few months. I have been on nothing stronger than Co-Codamol although rapidly gone from 8 to 30mg but now that I am on a second course of chemo am having to drop the Paracetemol for just the Codeine. My GP has given me some Ora-Morph for when I need it, which as I am suffering bad pain after my Neulasta white cell boosting injection on Wednesday is now, but for some reason I feel nervous about moving on to something stronger and have read some negative comments on its side effects (shouldn't look at the Internet I know!) just wondered whether you had any thoughts to share.
have been following your thread on the implant so hope all is still going well.
Lizcat I think you are right that the fentanyl patches are dearer than tramadol. I too had problems with that one a few years ago. It seems to be the last of the non-opiates that gets prescribed before moving on to the heavy stuff. Be careful with the patches and don't mess around with them - they are strong stuff and should you need to come off them any time - you will have to do it slowly. I get on very well with them, although the dose was pretty high before I had the intrathecal pump put in. They are tricky at first to stick on but there is a knack to it. Will 'talk' you through if you need me.My poor GP went through a bad patch a while back with the PCT leaning heavily on her to cut back on costs. All my stuff was expensive.
Hi Liz, Just to say I have a secondary bcn. She is brilliant. Either on the end of the phone, email and she has also been at some of my appointments. She gets back quickly to answer any queries and sorts out any issues. I thought it would be common practise for secondary ladies to have a bcn.
This is very busy again! Sad that it has to be because of bc but so glad we can support each other. Welcome to the new ladies - I hope you find plenty of helpful info and a lot of laughs on here.
Nicky - can't believe you've had your DLA stopped. That really isn't on. Let's hope it gets restarted asap.
Believe me, no-one was more surprised than me to be offered a Mac nurse contact!!! We shall see what materialises....Next shock would be if we got a secondary bcn but as they deal only with primary folk, I don't think that will be on the cards.
It's bitterly cold here today but have been out for a snack lunch and am now back home watching telly, reading and catching up on here. Later on, I have to nip to the docs to collect my prescription for fentanyl (sp?) patches as recommended by hospital as alternative to codeine. GP I spoke to on phone tried to get me to have tramadol but I know of a lot of people who have gone cuckoo with them so I stood my ground. I suspect they may be cheaper than the patches. This doc once said to me before when prescribing tamoxifen and the hospital had told me to get a certain brand, 'I don't think I can prescribe that one, it will have to be the generic one. I've got budgets to think about'. Fortunately, I have managed to avoid him since.....