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Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

Hello pippin
I have no experience of a hip replacement but had a femur nail put in to support my rotten hip !!
I think hip replacement is quite a quick recovery ..in hospital they get u walking the next day after op !! I think its about six weeks of physio and walking on crutches ..the hip has to be quite good for the replacement hip ..mine was too far gone !!
I saw people in their 80s having the op so if u are young ..it will be a quicker recovery .
Like u I prefer not to take pain killers if I can manage without .
Xxx
Pippin
Member

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Hi all

Bit quiet here.

I understand the reluctance to start painkillers. My hip doesn't bother me much until I put any weight on it. I guess I probably would walk better if I were doped up but so far I have valued a clear head over a good gait. It's over a month now since rads and my mobility is improving now.

Does anyone have any experience of hip replacement? Like I wondered how long before you get home, how long before walking unaided, how long before driving and generally was it worth it?

Best wishes

Pippin

rosie53
Member

Re: Bone mets - please join in

Thank you for your quick reply Nicky, definitely going to ask to be kept on with zoladex not comfortable with stopping it this year.
Also going to question my denosumab with her too, can't have anymore rads in my hip because I had a blast there 3 years ago, also I am extremely stubborn when it comes to painkillers won't take anything stonger than co-codamol 15/500mg....feel like I'm giving in to "the beast" if I do!!!
Hugs Janette xxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi Janette

I agree it's a worry about the menopause as none of us know when we would naturally go into it therefore it's a bit of an assumption that at 50 you will be! After my primary treatment of zoladex for 2 years and hormone treatment my oncologist was sure I would be in the menopause - this was at 41, so a bit of a radical assumption! Of course when I stopped zoladex my periods came back and I think that's what caused my secondaries to develop sooner than they would have done. Having had chemo when I was dx with secondaries I made sure I was post menopausal by having my ovaries ablated (surgery ie the general anaesthetic wasn't an option due to heart problems). It may be worth you exploring this if you feel you want to be definite or ask to continue on zoladex if you are ok with carrying on, I don't think they can stop you.

As to Denosumab being 8 weekly it seems to vary between hospitals/consultants - as do so many of our treatments! I'm happy with the 6 weekly schedule I'm on, mainly moved to as I'm on 3 weekly other treatments so it fits in with those. I thought at first, when I went from 4 weekly to 6 weekly, I would feel more achey as I was convinced I used to ache just before my injection, but I've not had any real changes to my achey-ness at all - still ache a lot! Maybe as to move to 6 weekly and see how that suits you? Also you have said on some other posts how you are struggling at times with the pain, you could mention this as well? I hope you're not worried about it as you have had a recent scan but if it's affecting you maybe there's a pain killer you could take if it's particularly bad, or even have a shot of rads if it's always in one place? Anyway, take care.

Doodles - quick note for you - the lingo is very weird at first but you will get used to all of our abbreviations, but, again, ask us anything, we are happy to explain and we don't bite - promise!

Nicky x

Moijan
Member

Re: Bone mets - please join in

Hi Doodles,
Although I have bone mets for three years now, My oncologist tends to use my liver mets as a recovery measure, so I haven't really paid the bone mets as much attention....what I did want to share tho, is that when I see him, I type out all my questions on my iPad in advance and just hand it over to him.... saves me having to read them out and I just relax and listen to his replies.( if you prefer you could write your list and hand it over) it just ensures that no questions get missed out!

I expect the others have already mentioned this too, but if I am upset or scared about possible bad news, I take a friend and ask them to take notes... the onc won't be worried by this .... it's commonplace as appointments are stressful and we can easily forget what was said. I also ask for copies of my GP letters.... ( years ago a letter sent to my GP, was full of inaccuracy) These copies are sent to my home and they are a record of the appointment and my health status... so I find them useful to keep for reference. moijanπŸ“šXx.
Maldives
Member

Re: Bone mets - please join in

Hi girls I hope you are all coping OK. Berniece I am so sorry to hear you have had such a tough time of it. I hope things will go the other way for you now.
As you know girls I had a lot of trouble with my jawbone and teeth which I thought was down to the zometa. Well good news the numbness has gone completely. I still get trouble with my teeth tho. My mouth is a lot better moijan thanks for the tip. I'm ringing with difflam and it's really helping.
Today is the first day my mouth feels normal.
I am feeling really well and positive. Well until I have my next zometa. It's weird some months I don't get any side effects and another it puts me in bed for 2-3 days.
Anyway time for sleep now. Love and hugs to you all. Xx
Maldives
Member

Re: Bone mets - please join in

I have just sent it sorry forgot to press post lol.
Doodles123
Member

Re: Bone mets - please join in

Thank you for your replies that's really helpful. I'm taking a list of questions with me. I think not knowing things at this stage is driving me crazy and reading your lists it's like a different language sometimes but I'm sure I'll sion know all the lingo.
Maldives /Sue ....no message from you as yet x

Maldives
Member

Re: Bone mets - please join in

Hi doodles
I amight going to try and private message you. Haven't done it before so let me know if it doesn't go through. X sue
rosie53
Member

Re: Bone mets - please join in

Hi Nicky, nice to hear from you.
Just wanted to pick up on a couple of things you have just mentioned in your last post.
At my last onc appt she mentioned that when I hit 50 (which is november this year) she will probably stop my zoladex injection as my body should have also hit the natural menopause and that my ovaries have been suppressed for that long now that they highly unlikely to recover. I'm not comfortable with this as 50 is still quite early for the natural menopause to come isn't it???
Also in October last year she changed my denosumab to 8 weekly, I questioned this saying most the ladies on here get changed to 6 weekly but she said 8 weekly is the current guildline on it. I have definitely noticed that I am getting more pain and achey going that length of time!
Hope I haven't babbled on too much there, sometimes it is hard to try and explain things in text! Lol
Hugs Janette xxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi doodles.

Sometimes this thread is really busy, sometimes it's a bit quieter - it just depends if some newly diagnosed ladies come on and share their fears - which we try to help with - or sometimes it's just because we're having a natter! Either way, just join in as much or as little as you want, it really doesn't matter if you just find reading the forum is helpful and you don't want or need to post. I think a lot of us read every day but quite a few, including me at times, don't add anything as they feel they can't add to what has already been said.

Anyway onto your questions. You can ask as little or as much from your oncologist as you want, you are entitled to see, and get copies, of all scans and reports. It took me a while to eventually ask some probing questions and now there's no stopping me!

What you will want to know is what type of SBC you have. Is it hormone positive (or negative) and is it HER2 positive (or negative). This will determine your treatment. You might be put on a course of chemo, which is likely to push you into the menopause, or hormone treatment which will also affect your menopausal state, including the possibility of zoladex which puts you into an induced menopausal state, which can be reversed once zoladex is stopped. You are most likely to be on a bone strengthening treatment as well, I think all of us are and it would be unusual if you weren't. This is now tends to be a 4 weekly injection called Denosumab, which sometimes gets changed to 6 weekly after a time. You are normally scanned after 3-4 months after starting a new treatment to see how it's working. This often isn't a bone scan as nuclear medicine isn't given that often but CT scans or MRI scans also pick up changes to bones and will indicate if they are healing.

Hope that helps and I'm sure some other ladies will add their views as well if there's other questions they have asked.

Good luck with your appointment and either take someone with you to take notes, or take them yourself, there will be a lot of info to take in which, in my case, always produces more questions, usually once I'm out of the room!

Nicky x

Carolyn52
Member

Re: Bone mets - please join in

Hello Bel
Thanks for posting about the jaw x Ray ..will get it sorted hopefully.

Doodles
You have Mets in the same sort of places as I have ..I was dx 2015 and have been on letrozole since and denosumab .
Yes ..you will be able to see your bone scan if you ask the oncologist ..it just shows "iffy" areas ..these are not necessary Mets ..can be arthritus or previous injury I was told .
It's funny looking at your scan for the first time ..I almost felt it an intrusion on my personal insides !! You are maybe some one that likes to know all these things ...me I don't anymore ...
Hugs xxxc
Doodles123
Member

Re: Bone mets - please join in

Hey all πŸ™‚ I can't keep up with this conversation as I haven't been on for a few days. Do you all come on daily?? Anyway I'm fairly new to this mets business. Bone mets was officially confirmed on Thursday and results of CT showed it is not anywhere else .... I couldn't believe how happy/relieved I was at this news as I think I had prepared myself for the worse. My first onc appointment is Wednesday this week and I guess treatment will start fairly quickly. I have no idea what to expect from the appointment but I prefer to know everything. I want to see my bone scan ..will they show me it? I've saw some of you saying exactly where the mets is .... my breast consultant only said it showed on lower spine, ribs and pelvis but that doesn't really tell me much ? Is it spots? Is it loads? Is this the kind of thing the onc will answer this week for me? Im presuming I will be put through the menopause now? (Im 43). So many questions and I feel I don't really know what I should be asking. I'm rambling on. Any suggestions for questions I should be asking?

BJR324
Member

Re: Bone mets - please join in

Hi Caroline 

im on denosumab and my dentist sent me to the hospital for a jaw X-ray, at the start of my treatment, he said he will be doing them regularly to keep an eye on my jaw! 

Sometimes I think I will glow the amount of X-rays and scans I've had!! 

It may be worth asking your dentist to refer you to hospital dentist to get X-ray done.

Weather here a bit windy and damp too, shame as hoping to complete our poly tunnel! Next calm day we will be out there, hoping no sudden gusts though or we could find ourselves down your way when we put the plastic cover on!

Hugs and good wishes to all. 

Bel. X

Moijan
Member

Re: Bone mets - please join in

Sent you a pm bernie

Carolyn52
Member

Re: Bone mets - please join in

Hello Bon
Thanks for asking ...the teeth are better but I'm waiting to c oncologist in April to discuss maybe a jaw xray before I start denosumab again ...I will get a dental check up as well but it wasent just one particular tooth ..they all went berserk !! ( dentistry in 50s and 60s was very basic and I'm paying the price now)

Well we had a very rough night here ..windy and wet ...where do all the plastic bags and crisp packets appear from when its windy ..they seem to be everywhere in our garden area?
Might just pop to Next sale later for a little nosy as still have vouchers to spend !
Enjoy the weekend every one .
Xxx
funnyface
Community Champion

Re: Bone mets - please join in

Bernie,  I would ask the doctor how she knows it is a cyst and not a tumor? I can tell you at my last scan of my lungs there were two "things" they called new  nodules, but the oncologist said that neither her or the radiologist thought they were cancer bc the make up of them was  different. So what I'm thinking about for you is maybe a cyst looks different on a scan  than a tumor. This is just a guess on my part. I'm sorry you have had so many complications. Does pancreatitis run in your family? I think it can be genetic if I remember correctly. Hugs and best wishes! FF

bonariensis
Member

Re: Bone mets - please join in

Bernie I'm glad to hear letrozole and denosumab are working for you after all the other stuff you've been through

 

Carolyn how are your teeth? Are you likely to have them fixed soon so you can return to denosumab? I am going to the dentist next week, just for a check up, my teeth are OK. My normal dentist is on maternity leave so, as I'm having a bone scan the day before, I thought I'd better ring and check her replacement isn't pregnant as well. However he's called Justin so not much chance of that.

love to all B xx

Carolyn52
Member

Re: Bone mets - please join in

Hello Bernie
This is Carolyn ..you didn't dream it up !
Wow what a story you have told us and you poor love having to suffer so much especially near xmas time.
I hope as letrozole lady too, that this little pin continues to do what it should do.
No one here is trainned to give medical advice apart from what we have experienced but we are real people that can offer kindness and support.
There is a helpline on the home page where there is experienced nurses on call to answer any questions you might like to ask. Personally , I rely on this site for answers to my queries as I don't have a secondary breast care nurse at my hospital ..I know the larger hospitals do but sites like this are a godsend to many.
Hugs xxx
Moijan
Member

Re: Bone mets - please join in

We can't offer medical advice, sorry! But we do know that there are lymph nodes everywhere in the budy and their job is to trap bacteria, not just cancer cells. So something like a cold or sore throat or pancreatitis, any itis, can lead to enlarged lymph nodes, which usually go down after the infection has gone away.

From what you have said, not sure why you would assume that cancer will make its home there xx however, if you have worries like that, best go back to see your doctor, hope that helps

MπŸ’šπŸ’šπŸ’š
Bernie610
Member

Re: Bone mets - please join in

Sorry that was Janette I was replying to wasn't it not Caroline who I have clearly made up lol xx
Bernie610
Member

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Oh thank you Carolyn xxx Yes I know what you mean re Letrozole being your best buddy, as I was taking my tablet the day after my scan results I stared at it thinking wow this tiny 2.5mg tablet is my saviour and kissed it lol. And yes long may it continue for us all 😊.
rosie53
Member

Re: Bone mets - please join in

Oh dear Bernie, you have had a rough time of it! Sorry can't help with the pancreatis??( Sorry spelt it wrong! ) but just wanted to say great news regarding your response to letrozole! Letrozole has become my "best buddy" for the last 18 months....long may it last!
Take care, hugs Janette xxx
Bernie610
Member

Re: Bone mets - please join in

Hello all! I first posted in November '16 after my shock new Stage 4 diagnosis (bones). I have not posted much since as I seem to have been constantly ill! At the beginning of December I was admitted to hospital via ambulance after an early hours 999 call due to horrific pain in the whole of my abdomen and what felt like the weight of an Elephant on my chest. I was diagnosed with Pancreatitis out of the blue apparently caused by gallstones they were not however trapped in my bile duct so no idea why it happened I was extremely seriously ill in the most agonising pain that thankfully my morphine pump helped with; I really could not have coped without it! I had my gall bladder removed after 2 weeks in hospital and was finally discharged 2 days before Christmas. Recovery was very slow not helped by an infection diagnosed on New Year's Day although noone had any idea where the infection was! Half way through February I began to recover, then, for the last 2 weeks have had a chest infection that I think is finally subsiding. Anyway before I was struck down with the chest infection I had my second 3 monthly CT scan since starting the Letrozole and Denusanab in November (incidentally I only had 1 dose of Denusanab as it was put on hold when in the hospital with concern that it may have caused the pancreatitis but oncologist thinks not, I have now had my second dose and will continue monthly as planned). I have had my scan results Tuesday this week and the oncologist was so pleased with the reponse which showed an area in my upper spine had 'healed' as she put it and the two areas in my hip showed healing. It also showed a cyst on my pancreas and enlarged lymph nodes in that area that she said are both a result of the pancreatitis and can happen. Well after the elation of the 'healing' you can now imagine what I am focussing on and scaring myself to death about! Those lymph nodes and cyst and am terrified the cancer cells will will set up home there being those area are already compromised. Has anyone else experienced the pancreatitis or are any of you ladies medically trained and can throw light on the cyst etc situation?! Thank you in advance and sorry for rambling x
Carolyn52
Member

Re: Bone mets - please join in

Hello pmol
I'm so sorry you had to get the bc at such a young age ..this is such a cruel disease and takes no prisoners for age etc .
A lot has been written about it being self inflicted with lifestyle ..I don't think that comes into the equasion for most of us ..mine I think like Stress head is inherited through the faulty gene but for others I think its just a toss of the coin like Russian roulette really.
But ...we are woman and know how to give the big "c" a big kick up the rear end if we can !!.
Hugs xxxx
stresshead
Member

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Maldives and PMOL, sorry to hear about the pain problems..i hope yo get some relief soon.

PMOL...thanks for sgharing with us abot the crying...its nice to know i am not alone. I want to cry for so many reasons, most of them you mentioned and even when i dont it is just bubbling under the surface. How lovely of your youngest to be so brave. I tell my daughter the truth (she's grown up but still my baby) about things but try not to burden her with the everyday c**p. I know none of this is my falt but it still doesnt stop me feeling guilty about the way it  affects and changes her life.

rest assured you can cry all you like with s on here, someone will aways be there with a shoulder. xx

PMOL
Member

Re: Bone mets - please join in

29😊
PMOL
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Re: Bone mets - please join in

Hi girls - thanks for your support...  it's been a much better week but keep waking up in the middle of the night (4am today).  I've got my 'bag of goodies' at all times with me so that if any major pain happens then can hit it straight away.  Spoke with the Macmillan nurse and said that she was happy with what Inwas doing and to have paracetamol on a regular basis (4xday). 

 

Still, think that at any point through our treatments when we have to change drugs its a scary and anxious time... now that aI've had at least a doze of the regular ones, hope that the flaring would calm down and things settle for a while, specially for May πŸ˜‰

 

Maldives sorry about your mouthπŸ™ Haven't had any problems (yet) with mouth ulcers but if I hear of anything i'll let you know... cinema sounds ace!!! It's on our must see list this month so will probably do it soon. 

 

My girls are ace 😍 (Not that i'm biased!) the eldest (S) is having more trouble speaking about 'it' but she shows her concerns about the situation in different ways, probably helping out moreo and hugs and if I'm in bed coming and chatting away.  The youngest (F) has asked the most mature, scary and thought provoking question.  They all deal in different ways and our motto has been to be honest with them.

 

my original dx was when I was 35... had a non-cancerour tumour out when i was 24 so when ai found it just wanted it out... the rest as tthey say it's history... 

 

right... feeling a bit sleepy.... xxxxxxxx ❀️❀️❀️❀️❀️

 

 

Lou Green
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Choc ices are the way forward!!.

My mouth and tongue have been really sore after cycle 4 but the taste and texture of a choc ice is brill!! 

 

Lou xx

Maldives
Member

Re: Bone mets - please join in

Hi Moijan,

Thanks for the advice, I will give it a go. Start my third cycle tomorrow. It goes so quickly. I cant belive Ive done 6 weeks already.  

have a good weekend  

sue xx

Maldives
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thanks mojan I will give that a try. I dont rinse at the moment so I will give it ago.  sue x

Maldives
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Re: Bone mets - please join in

wrong date again

Maldives
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Maldives
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Maldives
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Moijan
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Hi Maldives, sorry your mouth is so sore...sore mouth's are the pits! Arent they.

 

do you rinse your mouth after every morsel or drink? I think that this is supposed to work to stop bacteria from multiplying and worsening the soreness...but im not positive ..anyway its supposed to helpxx

 

i was having three monthly mri's on cape, now they are every 9 weeks, eg after three cycles.

 

oh, and apparently Biotene mouth wash is supposed to be good. For sore mouths, FF recommended a couple of things...one was baby teething gel, which makes good sense too!

 

Moijanxx

Maldives
Member

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Immune Therapy Trials in Southampton.

 

Hi Ladies have any of you heard of these trials or are you taking part in them?  This is the same treatment they are doing in gemany.  I was just interested in it?????

Maldives
Member

Re: Bone mets - please join in

Hi Ladies,

thank you so much for your supportive replies. I am feeling much better this week although I have had a rough day today. Its where Ive been so busy. I managed to go into work for a few hours Tues & Wed. luckily its my business so I can do what I want. lucky me. It was nice to feel normal again for a few hours.

 

PMOL I am sorry you have had such a bum time lately too. Im awake most nights, most of my posts are done in the middle of the night.  

Dont fight the painkillers, I did for the first two years until a hospital visit due to pain led an onc talking to me very directly. She asked what I was worried about by taking them and I replied "I dont want to get addicted to them" she laughed and said "I think thats the least of your problems, you need to take them if you want to get your life back, when your in pain they work on the pain. The people who get addicted are not in pain so thier body needs the drug" It made sense so I started taking oxycoden slow release twice a day.

It did give me my life back, without them I could not walk or function at all. If you have been diognosed with stage 4 you can get a pallative pain nurse out to help you manage the pain. Mine is great, she monitors me on the hospital website and know all that is going on.  again I did not want to contact her as I thought they dealt with people at the end of thier life. WRONG - apparently as so many of us are responding so well to the drugs, thier job has become more of a support and pain management for us long termers.  I really hope you can get through your worry and take the painkillers so you are not in so much pain.  I dont know how I would be with young childern, its bad enough with my grandchildren.  Your daughter sounds so strong for you, its amazing how they can take on a roll as support when you needed it most.

 

Moijan - My mouth is really sore, tounge, lips ect. I am using dicodole mouth wash which stings like hell but then numbs it after. I also track my TM, which are going up. im on 550 for the body and 49 for the bones.

If they go up again tomorrow then I know the cape has not worked this time.  My onc only lets me have 3 cycles, I asked him about longer terms on it and he said no he didnt advise it? they all have thier ways and unfortunately we are the guinne pigs.    I am very vocal with my treatments and I am lucky my onc does tests every 3 months or more often if I say there is a problem.  I am so glad as I know many of the ladies on here have terrible trouble getting a scan at all.

 

I hope you all have a lovely week. I am off to see beauty and the beast with the grandchildren tomorrow and i am going to see Ghost in southampton with my friend on Saturday.

I also booked a mini cruise for me and my mum to belguim next week for the weekend. Hopefully I will be well enough to do all this. lol sending hugs xxx

funnyface
Community Champion

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Hi all, I do fairly well on chemo, but get nervous every time I start a new drug. I did 5 1/2 years of infusion chemo before I was given cape. I did like being on the oral drug. It was such a nice break from infusion. I went 2 1/2 years on oral. Then it was back to infusion. Currently I'm on oral again. I wish they had more oral choices for us. Best of luck to all!

funnyface
Community Champion

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PMOL..Paris! How exciting! That will be awesome! You are going to be busy getting ready! Your girls will be surprised! My oldest son turns 40 on April 13th. When is your birthday? FF

Moijan
Member

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Hi Maldives,Mrs Goggins, uncle Tom Cobley and All, etc

 

Maldives, I understand how you felt when onc mentioned iv chemo....being on tablets makes being a cancer patient feel much more controllable...doesnt it?  I really miss that and had no idea at that time, that it would eventually end and id be put on i/v.

 

how are your tms?  Often they do them, but dont mention them to us...mine were being done for about two years when i was on cape and I had no idea. The other thing was that when I eventually asked for a copy, 

i could see clearly that day to day stress had caused a rise...over time. But not everyonr is the same!

 

when I did have to go back on i/v, I was completely floored and freaked out...but after a couple of treatments, things settled down for me..both illness wise and emotionally.

 

i have also had muscle cramps( on Vinoralbine) I took tonic water but they went away on their own. Someone mentioned neulasta...I have filgrastim(similar) and have had some pains occasionally, but dont nowadays.

 

pain is just awful, isnt it? I have nakkered knees (from lifting people in a previous life) and even now with less weight, they still play me up!

 

cape did give me various side effects...Barton is the veteran there, to ask, but for mouth ulcers I did rinses of sodium bicarb after each and every food/ drink that I swallowed, horrid things, mouth ulcers....I made sure the peachy pills were not in my mouth long either...filled my mouth with water..tossed them in and swallowed quickly.

 

well, will shut up now.....apart from saying that yes, I too have a strange ongong virus which gives me a runny nose and nose/eye pain, but feels better intermittently! Very odd.

 

hugs..Moijanxxx

 

 

 

Carolyn52
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Hello pmol
I'm glad you feel better and wow ..you do have a focus now to look forward to ..Paris will be lovely for your family ...and a landmark birthday too ..
You must have been very young when u got the primary bc dx though ?
Hugs xxxπŸ—ΌπŸ—Ό
PMOL
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Hi girls - thank you for your messages. Today has been a good day although walking into M&S someone told me didn't look too good!!! πŸ˜’

 

Anyway, Funnyface, yes, I can tell you the surprise as I'm super excited and just keep praying that I'll be good enough to enjoy it... PARIS! And it will coincide with my 40th so should make it super special πŸ˜‰

 

Thank you for your support, I know you guys understand xxxxxx❀️❀️❀️❀️❀️❀️❀️❀️

funnyface
Community Champion

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Good morning all. PMOL and Maldives. I'm sorry you are both in pain. Pain wears on you and pulls you down. One can only take so much. PMOL, your daughter sounds like a sweetie. It is refreshing to hear how positive she was with you. She wasn't stomping her feet and demanding something for her, she was taking care of her mum. You should be so proud of her! I'm like a little kid, can you let us in on what the surprise is in May!?!? 

 

I'm not sure if this will help with your medications, but when you get a shot of nuelasta they tell you to take Claritan not Claritan D the day before and for a few days after to eliminate the SE's which is pain.I kniw a lady with a blood disorder and she takes it to counteract SE's for one of her drugs. Maybe this could help. Worth a try!

 

Hoping you both can get the pain under control. Hugs! FF

Carolyn52
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Hello ladies
just sat up in bed this morning with my coffee reading your postings ladies ..my heart goes out to you both being in so much pain ...
It's hard to wake up, get up and deal with so much pain ..its a very cruel disease ..
I think from my experience ..this illness ebbs and flows ..some days no pain ..some days it really gets its own back !!
Hopefully ...let's think good things ...choc or McDonalds ..maybe ? Or a bit of online retail therapy ?
Sending loads of hugs xxπŸ’—πŸ’—
rosie53
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Morning PMOL and Maldives, so sorry read your having a tough time. This disease that we have to live with is just soul destroying isn't it! PMOL, it brought tears to my eyes reading your post!
We all totally get where your coming from, all the "why me" "can't do this anymore" etc, sometimes when you get so far down its really hard to get back up. Pain is what really brings me down i had to come home from work last week as I was struggling (nothing so bad as yours though) and that has a knock on effect with my mood as it brings the reality of this disease back into play!
Well I you both start to feel a little better today, sending you both a huge cyber hug ((((()))))
Hugs Janette xxxxx
PMOL
Member

Re: Bone mets - please join in

Thank you... ❀️❀️
bonariensis
Member

Re: Bone mets - please join in

Hi Maldives and PMOL I'm sorry you have been in so much pain. Hope things are improving. It puts my own problems into perspective.

 

Hi Mrs Goggins I have sent you a personal message because we can't mention doctors' names on here.

love to all B xx

PMOL
Member

Re: Bone mets - please join in

Hi Maldives! 

I understand... had another muscle spasm last week after my first zomets, they said it was my tumors flaring and that it might caus this. Ended up with stronger painkillers but that can lead up to addiction so to stop taking them as soon as pain was under control.  They hadn't told me how to get off the pain killers from the first bout about z5wks ago! Anyway, decided to go cold turkey over the weekend and all I did was cry. Cry because of the **bleep** (excuse me!) situatuion, cry because I don't want to feel like my falling apart, cry because I  don't want to be ill, cry because I want to be ok to take our girls (11&10) to a surprise holiday in May half term and just cry because sometimes aI feel like I cannot go on.  This would happen at 4am as for some reason I'm waking up and at normal morning hours too....  the worse/best part wsa when my youngest came whilst I was bawling my eyes, gave me a hug and said that we'll get through this, just like we did last time... (not sure if there are any spelling mistakes as I'm crying as I type!!!)

i'm feeling a bit more normal now... so I understand the pits of being in a fiercely down spiral and then better... as I'm sure lots of other do too.

will pray that you don't have to have chemo and they will,find something else that could do the trick.

lots of hugs xxxxxx

 

ps. Have you guys been watching the Lethal weapon series? It's sad/dark humour involved but makes me lol. (Itv on the uk) xxxxxx any other series that you can recommend?

Maldives
Member

Re: Bone mets - please join in

Hi ladies,

not been on for a while, had a few problems recently. had radiotherapy on Friday as the base of my back was in two. I had a MRI scan on Tuesday which caused me so much pain in my back nothing could ease it. 

Have any of you ladies experienced this??? I have early on in my dx before the painkillers but the onc said it wouldnt cause pain???

Well it lead to radiotherapy as the pain was uncontrolable. Im on my third round of cape so mouth is very sore and had my zometa earlier in the week which gave me flu like symptoms. Along with sickness from radiotherapy I was in a bit of a state to say the least.

On the good side I woke up this morning and all was well. Felt like a human being again.

Its mad how one minute you feel like your on deaths door and the next your like a spring chicken???

I've got my scans at the end of the month bt onc is already talking about IV chemo, a bit nerve wracking.

Well no point in worrying it wont change the outcome.

I hope all you ladies are well and coping with various treatments your on. sending one big hug out to you all.

sue xx