Op next friday unless it gets me first!! then at least two weeks in hospital. My scrap value will definately increase, new hip, plate in arm and rods in back.xx
Sorry to read your post above Rosie. I haven't had this done but I am sure that some of the ladies on here have. I hope they see your message and reply soon. I send lots of love and wishing the best for you and that all goes well with your op. Is this happening soon? Love Val
Latest up-date on this b--y secondary, I have seen the spine man to-day and he is going to operate to try to remove some of the tumour at T7 and then insert rods into my spine. This may improve my mo bility but how it will effect the loss of feeling caused by the chemo, no-one knows. Basically I could become paralysed at any ntime and b e doubly in-continent. Why does this disease have to be so cruel, Any one with this experience( and so sorry if you have) I would love to know how have got on.
Love to you all and thank heavens for this thread.
I've just caught up after 6 weeks. We are in New Zealand visiting our daughter.
Has anyone else been diagnosed with sec cancer that has re-occurred in their sternum?
I have had wonderful care from most nurses especially at my cancer treatment hospital. But what I think is lacking is just plain old common sense and an understanding of what it is like to be a patient. Some of the nurses especially the senior ones have so much paperwork to do that there is just not enough time to see what happens daily on their wards. I always think that what nurses need to keep in mind is how they would like their Mum/Dad/ Child was being treated if they were stuck in bed and feeling scared. Although they live daily with the general running of a ward, to the patients it is all new and scary and because you have just had treatment you are more vulnerable and don't know who to asked or who we did ask as all the faces are new to us. Common sense is missing from some of them. How do you teach that? But all in all my treatment has been good but unfortunately it is the bad experiences that stick in our minds I suppose. There are plenty of fantastic nurses out there doing their best in an overworked environment. Hugs to all Bone mets people, old and new. Love V
Latyest up date, my6 daughter is so appaled by the attitude of nurses to her as well as me that she is ringing tbhe Director of Nursing tomorrow. Help!!! i will be the patient from hell
P.S. Not all nurse3s are bad, just so over worked.
Oh my goodness, as a nurse I find that appalling! I am going to be a nightmare of a patient when I need treatment as in patient. You all seem to be having a really hard time and I am thinking of each of you who have posted and learning lots too from you all, some of which I find daunting to read but it's reality and its our reality. I've been having a crap week, but not as much as you lot so may the force be with us all. Wish I had useful helpful stuff to say but I am very inexperienced in this bone mets thing..... Xxxx
I had bad experiences at another hosp I went to for my hop op in Sept. The things I saw and heard were awful too. They forgot to give my MST and I kept asking for more pain relief. It wasn't until bedtime that they admitted they had missed the mornings pills. I asked them to change my sheets and help me put on a clean nighty. It didn't happen until the following day! They forgot to send me for an important Xray the day after the op. I was supposed to get help to get out of bed to try to use zimmer but it didn't happen. The medics the following teatime were furious. Now that is just a few things that happen in the four/five days I was in there. The doctors were great. I have nothing against nurses....I married one...but the best nursing care I received was from the student nurses. Keep in touch and go on to the word games on here if you get bored. I will see you there if you do. Love Val
Had FEC 10 years ago but perhaps there wasn't stats. available. Will be in hospital for another week or two. Medical care is excellent but nursing awful. I am rapidly getting a reputation for being a stroppy so and so!!!Hadn't better say where I am.
Oh Rosie, Not so good. What a shame about your fall. Any idea how long you will be in hospital? What chemo did you have 10 years ago that would cause such a problem to your poor legs? A big hug coming your way. Wondered where you were but that is not where I thought you would be! Love Val
Just to keep you up to date, as a result of my bone mets I fell and broke my arm last week. Am in hospital, appalling basic nursing care and have been told that the lose of feeling in my legs has been caused by the chemo I had 10 years ago. Rare complication trust me.!!!
Have an 8 inch plate in my arm and now have to wait to go to re-hab with a package of care before I can go home. Pretty fed up!!
Love to all
Thanks Dugsy and Belinda, thanks for your information. I have been on Capecitabine twice before Dugsy so know what to expect as far as side effects and successfulness. It worked for me both lots but I have had over 2 years chemo free and so that is good too.
Still no word re starting date for chemo but think they are trying to tie it in with my Zolidronate appointments. Just as well I stopped my Bondronate regime when I did. I Am waiting to hear word today about Blood Transfusion date. Love to all, Val
Thanks for the replies Val & Belinda. It's encouraging to hear of your friend in the US Belinda as there doesn't seem to be much response on here to those two chemos. I guess I just have to believe they will be the ones that at least give me a bit of stability.
Val, sorry to hear you are back on chemo again. I did about 6 months on capecitabine with very few SEs & really wanted to stay on it, but unfortunately I had progression after the 6 months so had to change. Got my Udderly cream from a website called Wiggle, that was recommended to me by someone on here. I also found Flexitol cream really good for my heels - they sell that in Boots. I hope you cope well with it & it works wonders for you:-)
Hi again Val, my hands are usually ok..I just use Nivea hand cream for those..my nails are quite bittle so I keep them very short to stop any breaking. Hope you don't have a long wait for your scan results..xx
Hi Belinda, I got my daughter to order the Udderly cream and got the one with Urea. Do you buy that one and do you buy the hand creams from that range also? Not been out of the house today but silver plasters on shopping list and will think of jennywren and belinda when using them. Nails keep breaking even with nail product help and not even started chemo!
I had a conversation with my BCN yesterday and today. She could only see a CT Scan ordered and I mentioned yesterday I thought I had been told I was having an MRI scan first. So she called back today that both are ordered. Still no word about blood transfusion so she is emailing the ward to see what is happening. I treid without sucess to get through to the ward I attend. Explained to the BCN that I am going to another hospital on Tuesday to see my Orthopaedic surgeon for Xrays and review re recent op and fracture to top of femur....to see if it is healing. Did not want the appointments to coincide. So she will find out for me.
I have found out over the years NOT to take everything for granted. Things do get missed or not ordered. We once cut a holiday (in Cornwall) short to return for a scan and appointment to find out that it had not been ordered. I do not wait any more, if I haven't heard I ask the relevant section if request has been made. |Hope this is not too rambling!
Love to all my friends on here, Val
Hi Val, it's usually Amazon for Udderly and Boots for Eucerin..I use a tip given to me by dear marilf our Xeloda Queen...alternate creams every now and then..it does help. Dear jennywren recommended the silver plasters.
Hi Dawn hope the rads will really help sort this new pain out.
Hi Dugsy, I have a friend in the U.S. who has bc and lung mets and she's been on Vinorelbine for many years now.
Hope everyone else here having problems and pain issues can find some effective relief...and soon.
Take Care All...xx
Hi Dugsy, Sorry things are not too good for you either right now and what a bummer to hear about your recent results.
I have not been on Vinorelbine but I know for a fact hat SusieV has. I am sure she will not mind if you PM her if she doesn't see your post today. My Oncologist also suggested a while ago that this was one of the chemos that could be appropriate for me but has decided to give me Capecitabine instead as it worked for me before. Hope someone will come along here soon to give you some help with answers. Love Val
After reading through all the latest posts it seems that quite a lot of us are struggling at the moment with pain or treatment issues. I really hope that everyone gets help & answers soon & start to feel stronger & more positive.
I too am struggling at the moment - finished 12 Taxols in early Dec after a scan in November showed a great response in my bones & to the small amount of fluid in my left pleura. However since finishing the chemo I have really not felt great, with my main worry being breathlessness, cough & feeling very tired. Went for results of my latest scan yesterday & sure enough things have got worse. Fluid in left pleura back again, some areas of bone got worse & now two lymph glands in chest areas enlarged too. Felt like I'd been hit by a sledgehammer.
Plan is to first drain fluid away, hopefully in next week, then back to see onc on Feb 14th to discuss next chemo which will be either Vinorelbine or Gemcitabine.
Does anyone have any experience of either of these chemos or fluid on lungs?
Feeling pretty scared at mo. I have two children, aged 7 & 12, who NEED me around for longer!
Take care everyone,
Dear Dawn, hope the rads help out sorting the pain. I had rad to my hip and thigh after my op in Sept and it helped a great deal. Odd positioning though! No modesty in those rads. I will keep the pregabalin in mind. I am on 600mg Gabapentin twice a day. Should be 3 times a day but finds this suits me better. Do keep posting as it is good to have us long timers on here sharing experiences about our treatments. Love Val
Oh Val I had to laugh at the funeral instead of christening slip LOL. I find when I get drowsy with the drugs I make slips like that too. My pain cons. has been prescribing lidocaine patches for me as well. I'm not sure yet if they are making a difference but his concern was to find something for me that would help without adding to the opiate load. Now I have both areas it's quite a game trying to decide where to stick them or whether to cut them in half and spread them around! Also had the gabapentin switched to pregabalin to see if it will make a difference. So having to balance that over the next couple of weeks - reducing the gab. and increasing the pregab. I think they are planning to do some rads to the T6 area - will be getting an appointment to see the rads team. I could do without yet another area of pain so I really hope the rads will work this time.
Belinds I am off to buy the silver plasters tomorrow as I have such a crack on my thumb and want to sort that out before I do start chemo again. Need to order the Udderly cream too. Which site to you get it from online?
Myfanwy, Have you tried Lidocaine patches for your back pain? You stick them on for 12 hours on the painful area and you MUST remove them for the next 12 hours. I used them before and my Oncologist advised me to start using them again. I forgot today and my back began to get painful as the day progressed. But do check with your doctor first. Worth a try and they do work for me but I forgot I had them!
Dear Alex sorry you are beginning to panic about bone scan again. I mentioned to my doctor that I hadn't had one for a while but she sort of brushed my question aside when I mentioned it. Don't know why. She is arranging MRI and CT scan but I had both of these done twice last year. But not had the bone scan for over a year. Anyone know the answer why this would be? I know I should have pushed but you are trying to take it all in and I am afraid I am not on the ball right now. Even my brain is ceased up and I keep saying wrong words. I was telling a friend about a Christening but used the word funeral instead. My husband kept me right though.....a lot on my mind I suppose. Love to all Val
Tilly, the medics really are awful sometimes aren't they! HZope you are getting over the new news!
SL, sorry it's more chemo, hope it will have few SE's.
Avril, hope tablets work and hope scan on Tuesday puts your mind at rest. Try to take it easy specially in this cold weather.
myfanwy, it's always so difficult to tell if pain is just pain or is cancer related, I tend to wait about 2 weeks and if I'm not seeing an improvement go to my GP. Have you any scans or onc appts coming up? Hope the pain eases, it's probably uncomfy chairs - they do me in!
Hope everyone coping, think of you all often,thanks for sharing xx
I am sorry to hear that you are going back onto chemo. I hope it does the job for you and the SE's are manageable.
Potmaid, I know the moonface look well, I don't like it either.
I am due for another bone scan soon so scan anxiety beginning to build.
Sorry to hear you are back with us Capecitabeenies Val..my only real side effect with this chemo is cracked heels and I alternate between Udderly (with urea) and Eucerin foot cream also with urea and have, luckily, managed to keep well throughout. Oh and I'm a real silver plaster bore from my postings but I really recommend them for faster healing of cracks. Good Luck..xxx
Val, sorry to hear you have to go back on Chemo, hope you don't have too many side effects. Claire glad you are posting.
I have been experiencing pain in my back. I don't usually but went to see a play last Thursday at Stratford and have had a bad back every since, the seats were like planks and the play was three hours long. It went off a bit yesterday but came on again today after sitting down at work all day. I don't know if this is as a result of the met to my spine or simply uncomfortable seats and normal sort of back ache. Does spine met pain differ from a pain due to posture? Its getting me down a bit.
Clare, lovely to see a post from you. I hope you are going on OK. Good luck with your treatment. Enjoy your day with your mum. xxx
Hope you enjoyed your shower,feel a little stronger and have a lovely day with your Mum.
I so miss my Mum.
Love Lucinda xx
hi all been docs said theirs something on my lung that he is treating as an infection...have to go back in a week to check its gone...if not further investigation will be needed....roll on nxt tuesday now ...xx
thanks Val and Nicky, my daughter is having her 2nd lot of chemo for cervical C and has been breathless tired racing pulse (she realy is struggling with the chemo) the doc has said hers is low iron, so i think i best get appt at docs and get bloods looked at, i somtimes think i blame any health probs on an overactive imagination and try to push them to the back of my mind, the ostritch approch i think lol, once again thanks ladies for your help x Avril
You are all amazing women coping with all the pain in you life I know how you feel as I was on horrific pain before diagnosis last year, mainling to my back. It was only when diagnosed that I had some action on it. I had reads to my spine and hip and it has worked well for months now.
Much of what Val says is trial and error to find what suits you, I like the little blue pills at night, I have increased those to 2 a night and I think thats why I am sleeping better too.
I'm sorry to hear you are back on Chemo Val, hope the se's aren't too bad.
Sleep is often the best medicine Dawn, so don't knock it and to be honest I bet you function better with the naps you have and thats all to the good.
My mission for today is to find out if i can take a lower dose of Xeloda and to cut down on the steroids that are making me moonfaced.......its not a good look 🐵
I may celebrate today and have a shower, as mum is here but I am really weak today, so gonna take it easy.
Luv to all
Hi Val, so sorry to hear you are back on chemo 😞
But it sounds like you've had a good chat with your onc and both decided this is the route to take. As long as it doesn't stop you going to France, feeling the sun and seeing your daughter 🙂 hoping the side effects, hands and feet, won't be too bad as well but you know theres lots of ladies on this chemo who will be giving you the heads up and helping. Hugs.
Hi to everyone else on here and hoping all the aches, pains and loss of energy is sorted for all of you who are suffering at present. As to blood tests on bisphosphonates, I had them regularly when on pamidronate as I think your calcium levels need a regular check, but don't get them on the tablet form, so some of us might have low levels of iron etc without realising it.
Take care all.
Hi Val - sorry you are having to go back on chemo. I do hope the new bloods will give you a bit more get up & go :). I also have the zometa every 3 weeks to fit in with the 3-weekly herceptin.
I suppose I am lucky that I haven't had to have too much chemo since having 2ndaries (Must have had enough though through various primaries!!) When my bone mets were first dx I was put on capecitabine (xeloda) but had to come off it after 2 cycles 'cos of side effects. I then went on to navelbine but when that stopped the ca. became active again and it was then they found I was her2+++ and herceptin has worked well for me all this time (since 2004).
I do find I get very sleepy now - sometimes don't wake till about 11 a.m. and then if I sit down some days I sleep on and off much of the day but for me this is all down to the pain meds. My red blood count has always been very good I think at around 12 or 13+ but after the rads to my spine it did fall to 10.2 which is low for me and they did say that it takes the bone marrow some time to recover after the rads I had - and it looks like that has started happening now as it is going up again. My bloods are done every 3 weeks and I am told this is because I am on zometa - how about most of you here on bisphos. - are your bloods done regularly?
LOL it's not surprising I don't wake till 11 or 12 noon!! I really should start going to bed a bit earlier. Hope you are all tucked up in bed having a good sleep.
Just been reading recent posts.
I think us women are amazing, the way we are made to cope with all of this. I ended up being an hour late for my wig appointment and missed it...freudian slip I think.
Avril - I too have recently been getting quite breathless and tired, I have self diagnosed myself as being anaemic. I am currently taking capecitabine and every month something is wrong with my bloods, I am guessing this month it is my red bloods cells, I will find out next Tuesday. Maybe even if you aren't currently having chemo, you could get your bloods checked as you could possibly be anaemic.
Hope you get it sorted soon, it is so frustrating!
Avril5050, Have you had your HB checked recently? I have been feeling tired and a little breathless and I am getting a blood transfusion to help with this. I have had 2 units of blood on 2 occasions since my op in Sept but my Oncologist told me today that it may be nothing to do with that but my body is just not producing enough. I told her I was trying to eat good iron rich food but she said with this diet didn't make any difference. I know you may be different but woth checking your HB by easy blood test.
Otherwise I think that tiredness is your body's way of telling you to rest which I need to do ( but would prefer to be doing other things sometimes). But listen to your body. It is often telling us if we only listen.
Sorry you are feeling this way. My head wants to do stuff but my body is saying No. I am often over-doing it and I never learn! Hugs to you. Val
hi all, i have started to feel a lot more tired of late and sometimes breathless, i dont seem to be able to find much info on sec C and tiredness lots on chemo/tiredness so wondered if you ladies might be able to help me out ???? thanks
Hello Sue, I don't know If I told you about this before but I take one 25mg tablet Amitriptyline for sciatica pain down left leg and buttock and no longer suffer at night.
I saw my Oncologist today. She is arranging for me to have a blood transfusion and an MRI scan. I am going to get my Zolidronate infusion 3 weekly instead of 4weekly to coincide with me starting chemo again. Going back to Capecitabine which I have been on twice before with success but had sore hands and feet before so need to keep an eye on that. Obviously need to stop my Femara while on my chemo. We had a long discussion about different options but both agreed this one would be right for me just now. Other chemo could have been used. My back is often sore so I have to use my pain patches again as is needed. Quite happy about all that but a lot to take on board. I asked her if I would be able to go on holiday to France if I was on chemo tablets and she said yes it would be okay. I did tell her that I really wanted to feel the sun on my old bones again. So nothing new really, just as I suspected it may be, so hoping I can cope as well as you other ladies are doing right now. Love to all my bone met friends. Good night, sleep tight. Love Val
I found the Macmillan nurse was really helpful in sorting out my pain meds. I was offered an appointment with the 'pain team' at the hospital but found that the macmillan nurse, who came to see me in my own home had already sorted it out so i cancelled the hospital.
I found out about my lung mets when i asked for a copy of my CT scan report. When i asked why no one had mentioned it to me i was told the onc had definitely told me, Well i didn't hear him!
I said was he not surprised when i didn't ask any questions about it (i usually turn up with a list). I was told 'not really as it doesn't make much difference to your prognosis - after all its already in your liver, bones and brain'.
Oh well,of course, why would i worry about it spreading again............!!
Hope all who are in great pain at the moment can get some relief somehow. I have 2 friends who were admitted to their local hospice for 4-5 days while various meds were tried and tweaked. It did help both of them and the meds were adjusted over time so they didn't feel nauseous or feel they were sleeping the day away.
For Susie, I had exactly the same pain you describe and had a couple, it might even have been just one lots of rads to my sacrum which did the trick.
Take Care All...xx
I was just thinking about you yesterday and thinking I hadn't see you around for a while.
Hope you get the pain sorted out. Hope everything else in your body is behaving itself!
I haven't posted for a while......sorry. But, yes, I too am burning the midnight oil and waiting for pain meds to kick in so that I can get some sleep.
My pain is spasmodic...a sciatic pain down my left leg and YES it always seems worse at night when I am trying to get to sleep. Not sure what if anything can be done about this but I will ask when I am at hospital to pick up my next chemo dose on Wednesday.
Hoping for relief for everyone
I so far have tried to move about when the ads come on the tv and with the help of heat packs it seems to help, I am ready for bed but can't send myself there yet, OH won't go to bed as so worried about me so he's on the sofa, I really feel so bad for him, I don't know how I can get through this without him. He has been so supportive and positive throughout all this ordeal, but we have both hit a brick wall so far, I can't see past the rads after the last op, I cant see the next op happening with the t2 and 4. After that I would be my 3rd chemo which doesn't bother me at all, but just can't see it happening,
We have decided that we need to be in touch with the bcd in the morning to discusse better pain relief but the anxiety and pressure that my mind is under is making the pain quadruple,
Do you just have plain horliks or something a bit stronger ,!!!
Dear Dawn, I am shocked but not surprised at your recent diagnosis about T6. I have read a few ladies on here who have been given "new" information about things they didn't know about.
I often have to take a lie down in the afternoon if my back aches. Sometimes my pain feels more muscular than bone pain and I think you begin to know your own body and what kind of pain you are experiencing.
I am off to see my Oncologist tomorrow. I should be in bed now but as usual I have replied to some PMs and then looked at my "saved discussions"....bad move....I will be here for ages! I have a probelm with my HB and although I haven't been told yet!....I expect I may need another blood transfusion tomorrow.
Mentally I feel really good but energy levels are very poor and everything takes a lot of effort to do. I keep sitting down to rest inbetween things I am trying to do! I went shopping and the girl at the checkout offered to help me pack then got a young lad to push the trolley out for me and load the car up with my groceries. I did get some great bargains in the book aisle when I returned an unopened DVD and got 4 hard-backed cookery books one I gave to my daughter.
Anyway I diverse....I am not doing too great at the moment but hope my visit tomorrow may get things sorted. Will post on here tomorrow provided I have some energy.
Hope everyone sleeps well tonight and has a comfortable rest. Love to all bone mets ladies especially those of you with problems with pain. Love Val
I had clinic appointment last Tues. and the onc (new one) said she had taken a good look at all 3 mri spine scans that had been done over the past year and all was stable including the tumours at L2 & T6!!! Well I knew about L2 that is the one that has been giving me all the pain these past 3 years. BUT no one had ever mentioned T6. I know I have problems in all areas of my spine and as they said on earlier scans - damage is throughout. I know from copies of older notes that I have that T6 was never singled out so told her I was a bit cross. The problem with having frequent changes of oncs at the Marsden is that I am sure one assumes the other has told the patient about things like this.
What is strange is that I had made notes so I wouldn't forget what I wanted to ask and I have had a lot of new pain around my right side (back & front) rib cage. It started the day after the nerve block (beginning Dec) and felt more like a muscular pain as it hurt with certain types of movement, rather than with breathing or coughing. So even though the mri report says stable she thinks this may be related to the tumour at T6 so yet more investigations to come.
Jill I'm sorry you are really suffering so much from pain. I don't think it is possible to completely control all pain - for myself I find if I could take enough to control my pain I would be asleep all day/night! So I have to find a balance I can live with. It does sound like you need a lot of help to do just that, but it sounds like you need to find if other things can be done as well. It may well be worth a call to the helpline here tomorrow to talk things through. I do find at the moment that things get worse at night. It starts to build up late afternoon so maybe I need to take time out then to lie down for an hour or so. Haven't tried it yet LOL.
Hope you all sleep well tonight - I shall be off to bed soon with Harry Potter to keep me company. He really has given me back my enjoyment of burying my head in a book!
Another who's not posted for a while. DX Bone mets 09/11 with 3mm suspect nodule on lung. Started ibranonic acid and aromasin (was arimidex). CT scanned on return from hol in January, which showe dno change lung (hoorah) but more mets in pelvis.
Pain meds had been going up - oxycodone SR and breakthrough - now 45mg SR and 15 breakthrough. I hAte Aromasin - lost appetite, lost taste buds, screaming with pain which is morphine up so quickly. Dozy head, no concentration, only comfort heat pads from knees to waist and foetalk position - what quality of life.
Onc decided tamoxifen(used this OK in IBIS trial 2000 - 2005 so at least less worries there) and rads when I want them. Don't want to 'waste' my chance at these in affected areas too early.
Getting easier as Aromasin gets out of system but so fed up.
Oh Jill, I am so sorry you have been having a terrible time. I think that the palliative care docs are so much more skilled with prescribing appropriate pain relief and Macmillan nurses are a good gateway to them although its a bit strange referring to this service. This whole lack of monitoring really worries me. I really hope someone has sorted your pain out , love and strength to you and your family xxx thanks val, scottishlass and everyone who responded to my last post, you have really helped. May the force be with us all xxxxxxx Jill, hope things are looking better this week, I am appalled at how you have been treated.
Jill, obviously you need your pain sorting out now, but once that is achieved you could try asking about going to a pain clinic. It might be worth asking about complementary therapy, this is often available for cancer patients and could include acupuncture, massage, counselling etc. Some health authorities have palliative care teams. These types of service are known as different things in different areas but if you have a Macmillan nurse or a BCN, they may be able to get you in touch with a suitable service very quickly.
I am so glad you at last managed to get some rest, but your level of pain is not acceptable and not necessary! MY GOD! I feel so angry for you.
- will be thinking of you. xxx
Thank you for all you kind words, driffted off to sleep about 3ish, slept quite well. Have decided just not to go to bed till desperado state sets in!
I'm on slow release zomorph at night and morning but feel that l need to increase the diazepam probably?? Can't understand why the pain is multiplied at night, is it my mind???
At one point I was on so much medication I couldn't stand up and it was frightening for my daughter, never go there again. Just feel empty at the moment will b in touch with the hospital tomorrow as the pain was where they had done the vertebra and no where else, tried the tens but to no avail, heat packs did help slightly.
Hope everyone is enjoying their Sunday