Bone mets - please join in

[Rose47]

Thank you Carolyn for your reply to my worry.  I just don't think I can cope with having to wait for another scan and results just at the minute after all these appointments.  I was quite surprised to have a mammogram as I thought that anything growing back in my breasts would show up on a CT Scan ! 

xx 

[funnyface]

I slept in my bed last night! My feet went down some last night. Carolyn, I started getting my flu shot in August. My hubby and our friend Terry every year in late Sept or early August get these nasty colds with terrible hacking coughs. They manage to have this for weeks and both are too stubborn to go to the Dr. Then I would catch it. I often wondered if these two actually had the flu. I decided to get my flu shot in August and even though these two continue to get sick I've never had it again. This year I convinced Ross to get his shot early. Well, Terry has the cold and hacking again and Ross hasn't got it! I'm positive it's the flu and not just a cold. I usually have about 12 hours between dinner and breakfast. I had that sweet breakfast on Sat morning, then ate some of it Sunday and Monday. Some went on the trash. That was a major treat for me! Breakfast is usually a half cup of cottage cheese and whatever fruit we have. If we don't have any fruit then I eat a cup of cottage cheese. I also do veggie omelets. I love an omelet with tomato, asparagus and mushrooms and a wee bit of cheddar cheese. FF

[Kate21]

Hi Carolyn, I do think there's something in the overnight fasting but with food in general it does seem to be that what's healthy one week is out of favour the next! I'm a bit odd in that I like reading research type stuff, probably because I had to a lot in my work, but think you do have to take some of it with a pinch of salt and moderation is probably the key, along with a bit of what you fancy does you good! 😉

Hope you escape all the viruses that are bound to come around, did hear on tv that Australia had a bad time of it this year, do we could get the same! Something else to look forward to! xx 

[Carolyn52]

Hello Kate

I must be the most unhealthy person here ...I eat too much choc and junk food etc etc but I must say I have been doing this little routine for a year and don't get kept awake by indigestion or heartburn !

Well just had my flu jab ..so hopefully it will do it's job again ...useless info from my nurse but the jab takes 2 weeks to start working so anything like a cold, runs or sickness in that time is not related .
Xxx

[Kate21]

Good morning Carolyn! I don't think it was a quack article! I've looked a lot into diet (haven't said much on here as reading through the site I get the impression that dietary info isn't always welcomed), I've read lots about this, cancer cells like sugar, and yes eventually all food is converted to glucose, but it's not as simple as that. Having an early evening meal and not so early breakfast is widely believed to be beneficial. I read these things and take the attitude if it's not going to hurt me, they are well worth a try! To me it did make sense, after all break...fast is how the word came about I believe! xx

[Carolyn52]

Hello ff
Happy birthday for yesterday ..glad u had a good time and wow that breakfast sounds gorgeous but huge ..I prefer going out for breakfast or brunch as we call it ...don't eat much at the end of day these days ..indigestion usually kicks in !
I know this sounds silly but I read somewhere that starving 12 hours a day stops the cancer feeding so much ...so I never eat after 6 pm and then don't eat breakfast to 9 am at least the next day ..it was probably a quack article online!!
Well ff ..u need to get that back sorted so u can get to the shops and spend your birthday money on some nice new slim woman clothes after all your weight loss.
Sorry about the pudding feet and ankles ..maybe just side effects of some of the pills u have taken.

Hugs xxx🌹

[funnyface]

Hi ladies! I'm very frustrated but hanging in there. I'm not having the unbearable spasms, but still have a good bit of pain when I try to get up from laying down. I'm able to lie down without the spasms. I still haven't slept in my bed. It's easier to get up off the couch. There is more places to grab and pull. I've been to the chiropractor 8x now. I have to go Wed and Fri yet. He hopes I'm fixed then. It really hurts when he works on me.I've been to the chiropractor  before over the years and it never hurt. Today I was on my back and he ran his hand up my thigh and it immediately shot pains to the area in my back. I want fixed but I sure would like to know what caused this! My feet, ankles and legs are swollen. I hope it's bc of the way I've been sitting and sleeping. Tonight and tomorrow night I'm hoping to try my bed, if the swelling doesn't start going down then I might need my kidney function checked. I'm determined to see my granddaughter,but starting to worry about me. I'm off the muscle relaxer, wow did they make me feel goofy. I only take oxycodone before I go to bed. When I was taking the muscle relaxed I couldn't stay awake. Every time I turned around I was nodding out and dropping my cell phone or kindle. I did have a nice weekend. Hubby, my kids and their OH's took me out for breakfast Saturday for my birthday. I like to go out for breakfast more than I do dinner. We went to a place that goes all out on their choices. My breakfast was called "Some Gave All" It was 3 dinner plate size blueberry pancakes, with creme brulee between them. Topped with fresh strawberries and bananas, then drizzled with white chocolate and a berry syrup topped with whip cream.I definitely brought most of it home. Then hubby made my favorite chicken dinner. It is chicken marinated in honey and mustard. Then baked topped with mushrooms, bacon and  two cheeses. Also had asparagus and baked potatoes. Finished off with ice cream cake. Crazy family lit 63 candles on it. They all gave me money to do some clothes shopping. Sorry, I was so chatty! It's the first I've felt like talking in days! FF

[Carolyn52]

Hello Maria
Two months isn't long for your exmestance to start working ..I think it needs at least 6 weeks to kick in and start blasting the little blighters ...
It sounds like you are being well looked after with all appointments but sometimes u just want to forget hospital and get back to normal !!
Hugs xx

[Rose47]

Hi Ladies,

Hope none of you are being blown away by the hurriance!

I just wondered if I could ask a question, its just something that is going around in my head.  I have an onc appt on Wednesday which is my first appointment since changing treatments nearly 2 months ago.  I was changed from Tamoxifen to Exemestane.   What I am wondering is will they give longer than 2 months to give it a chance to work before I am scanned again ?  I have monthly Zometa injections and have had a mammogram, bone scan appointment and an appointment with the breast surgeon this month and I just feel like a break from the mental torture before it starts all over again !!  (sorry to moan)

Nicky huge congratulations on both the new grandchild and your scan results,  just brilliant.

Funnyface I hope your back is getting better.

Carolyn I think I read you were sufferring with some aches and pain, I do hope they have gotten better.

Mojan, how are you ?   and kind thoughts to all the other ladies out there bravely soldiering on.

Maria x

[Kate21]

Hi Nanofthree, I agree, you should definitely check! Hope you enjoyed your time away. Please do let me know how you get on. Kxx

[Nanofthree]

Hi Kate. Sorry, I have also been away tho weekend in the new forest. Wanted to forget about cancer! But home now and thank you for the info. I am not sure about what you can and cant post either. I see you are on letrozole, but even though I am on chemo I am still going to ask onc. You never know! Will let you know. Hugs x

[LYNDYLOO]

Morning Benten

Regarding scans hospitals seem to vary quite a bit in my opinion. Is a a bone scan or a CT scan you are asking about?

I can only speak regarding myself I was diagnosed with bone mets same time as primary over 8 years ago. Finished chemo and Rads in April 2010 put on Letrozole which worked for 4 years I did have any scans at all until January 2014 when I complained about more bone pain. Had a bone scan CT scan then treatment was changed. From then I seemed to get scanned every 6 months for 2 years then last year it seemed to change every 4 to 5 months.

Now this year had CT scan in March then another one in August hope that helps you understand more about scans.

Linda

[Benten]

Thank you ladies for your replies about the scans. I suppose it is getting used to the difference between the intensive months of treatment when you have your primary and how I am being treated now.. You feel as if you are never away from the hospital or doctor and your whole life seems to revolve round your treatment with your primary. This time I pop a pill every day and get an infusion every three months,  Life on the surface is back to normal. Don't get me wrong I want it that way and hope it stays that way for a long time. However my mind is on it all the time. When I am at work I can forget about it for a while but when I get home it all comes crashing back in. Anyway enough moaning, off to Tescos. Everybody still wants fed.xx

[Kate21]

Hi Nanofthree, just read a post over on Complementary Therapies in the thread about diet and cancer where someone is asking about probiotics, says their hospital info says not to take probiotics if on chemo so you should definitely check first if you decide to try the Florassist. Kxx

[bonariensis]

Hi Benten

I think it varies depending on what's wrong with you, how quickly it's progressing, what your treatment is, what kind of scan you are having, in fact everyone is different and of course so are oncologists in their approach. Hope your treatment is working and your next scan result is good.

Bon xx

[Carolyn52]

Hello Benten.
Just to answer your question regarding scans ...I get mine every 8 months .. I see oncologist every 4 months. ..I think every hospital varies with these things though.
Xx

[Kate21]

Nanofthree, just thought on and looked it up on the website...why didn't I think of that before!! 

It's called Florassist Oral Hygiene by LifeExtensions. Can I name the website on here? I'm new to this forum so not sure what I can and cannot post! Only the pharmacist I mentioned writes articles for the site and has written one about this. Please let me know if you need any more info xx

[Kate21]

Hi Nanofthree, yes of course, I'll be back at home tomorrow. As regards my Oncologist, I haven't asked specifically about it but have spoken about supplements and didn't have a problem with me taking them. I did speak with the pharmacist at the company I buy them from, told him I'm taking Letrozole and he said it would be fine and to be fair I think he would say. I buy a few things from them and something I asked about with a view to taking he said not to, so I don't think he just recommends things. Also, thinking about it I think they are the cheaper probiotic I take, I also take one to prevent colds/flu as I don't have the flu jab. Will be in touch tomorrow xx

[Benten]

Hi. I hoping someone can give me some answers about the length of time between scans. I had my first scan at the beginning of June when I was diagnosed. I saw my onc a few weeks ago and he said he would see me late November and he would see about arranging a scan. It is going to be at least six months since my first one. Is this normal timescale?

Benten x

[Nanofthree]

Hi Kate. That sounds very interesting. Do you need your oncologists approval to take this? Would you be able to let me have the details please? Thank you. Xx

[Kate21]

Hi Nanofthree, afraid I cannot offer any advice about the chemo but I've had some dental issues and had to have two courses of antibiotics. I really wanted to avoid taking any more and looked into probiotics, I take a course of one especially for oral hygiene every other month. You take for 30 days but remains effective for 60 days. It's not cheap but I can say that for me it's really helping as I haven't had an infection since. Not at home at present but can post the details if you're interested. Kxx 

[Nanofthree]

Hi Maria Louise. Thank you so much for your encouraging words. I will try not to worry! You just imagine the little blighters multiplying like crazy dont you. But you obviously didn't suffer as a result so hopefully I will be the same. Hugs xx

[Rose47]

Hi nanofthree

I completely understand your worry.  When I had FEC last year I had to take a break between my treatments of 3 weeks whilst my blood counts settled down.  Nothing had happened in the way of progression on my scan taken after this break so have hope and try to not get too anxious.  Big hugs xxx

[jazmia]

Hi Nicky,

Thanks for that info ,i shall look into it and i see bcn plus oncologist next friday and will mention it to them ,although i did three weeks ago and onco said yes 2 hours each time to make sure i have no reaction,plus i did ask nurse and my own gp ,but all gave the same answer ,the only one that differs is a bcn from city hospital and she said the time had been cut to i hour,so will let you know how i go on as i can not see the point as have had 11 infusions of herceptin and perjeta ,but perjeta taken off me because can not take it with chemo tablets ,so had one injection in hospital and one at home but viewed for two hours ,quite frankly its a pain in the bum.

Thanks again.

Reneex

[Nanofthree]

Hi Carolyn. Thank you and sorry I am here again! I am sure someone will reply to my cry for help! Xx

[nicky08]

Hi renee

Just a quick post regarding your Herceptin. When it was changed from IV (needing 90 mins infusion time) to a subcut injection (taking seconds to administer) all ladies had to be observed for 2 hours after the first injection. My friend who had been in the IV version for over 15 years still needed to be watched for any reactions after she was changed to the subcut injection. However after the first one and assuming there are no reactions you shouldn't need to be observed. If they tell you otherwise maybe you can ask them why? When I was on Herceptin and Pertuzamab, both IV infusions, I went online and checked the guidelines for infusion times. I had to tell the very experienced chemo nurses that both could be given over a much shorter period of time than they were giving them to me. Once they checked with pharmacy they agreed. They weren't happy initially as I was telling them what to do but it literally saved me hours at the hospital every 3 weeks.

Nicky x

[Carolyn52]

Hello nanofthree
Welcome back ..its been a while since we heard from you ...as usual I'm as much help as a chocolate teapot with advice about the chemo stopping!!
Hopefully ..one of the wise owls reading here will be able to help.
Sending hugs xxx

[Nanofthree]

Can anyone offer any advice please?  After several treatments I am now on Paclitaxol.  I have had one course out of six, feeling ok but have now developed a tooth infection.  I have potential ONJ so the tooth cant be taken out and I am on antibiotics yet again so the next course of chemo is being delayed until the infection clears.  My question is, does it matter if chemo is delayed by a couple of weeks?  I am really scared that it is going to run rampant during this time.  Has anyone else had treatment delays?  Feeling really low at the moment and need advice and reassurance.  Thank you.  Nanofthree xx

[Carolyn52]

Hello Chris and ladybird

I found an older thread under treatments and medical issues which I have bumped up for you. Hope it helps.
I think I read that only a few bigger hospitals in UK are self funding this injection but there are a few ladies here that might be on it.
Sorry ladybird is leaving our letrozole club ..but it's been good for over two years ..so time to move on to something better maybe.
Hugs xxx🐞🐞🐞

[Ladybird2]

Morning ladies
Just back from another visit to Christie with Ladybird.
She has now been taken off Letrozole cos more tumours have appeared on spine and hip area. They have put her on Fulvestrant injections and suggest some radiation.
Letrozole worked for 2.5 years but now seems to have run its course.
Anyone here on Fulvestrant?
Love to all you ladies.
X Chris(topher).

[jazmia]

Hi Bon'

Thnaks for reply ,i will take her up on the offer ,it just made me think ,am i worse than i feel?,but the other nurse i have to cope with as long as on herceptin ,as apparently thats how it works ,a nurse monitors you for two hours after every injection so every three weeks,but to be fair she was very nice ,even offered to do some household chores for me if i so wished .

hugs reneexxxxxx

[bonariensis]

Hi Renee

Glad you have finished your rads and hope the side effects wear off soon. I would take up the offer of a MacMillan nurse. They know and understand and will speak up for you if needed.  And you won't have to sit with her for 2 hours!

Hugs Bon xx

[jazmia]

Hi Carolyn,

yes had my doctor today for review and she said exactly what you are saying ,also told me she is leaving the practise ,not good news but will have a new face in two months time,

she also asked if i would like a MCMILLAN NURSE ,i did not know what to say as dont know if thats good or bad ,so have to think about that ,it has never been mentioned to me before so dont know what to think,

any answers gratefully appreciated.

take care reneex 

[Babsy]

FF really exciting. It's all the waiting ha ha. I adore my grandchildren and they really lift my spirits. I've had extreme pain these last few weeks. I often sleep in our recliner and it doesn't touch the pressure points. Getting into bed and trying to find the one position !!! I'm on a much higher dosage of morphine and nerve blocks. It's because my lower left rib has squashed nerves. Also I'm having radiation on the area next week. I asked for I've never been informed about this option it's only being on the forums that I knew about it. Disgusting really, I think I'm getting so angry because this scenario and many worse things have happened to me and it's only cos I had knowledge about certain things. I'm thinking of creating a leaflets for people diagnosed with bc and MBC. A good idea? 

[Babsy]

Ooh that's sounds really interesting seeing if there is a pattern of development of invasion. X

[rosie53]

Hi Carolyn, yes my CT is of a similar time mine is the 27th, see onc for results the following week so not too long a frantic wait!!!!! 

Letrozole hopefully still kicking the big Cs backside 👊

FF, glad to hear you managed a decent nights sleep, I always think you can deal with most things if you have had a good night's sleep! 

Take care ladies Hugs Janette xxxx 

[Carolyn52]

Hello Jeanette
Well got my ct scan booked for the 25th October. .think it's the same time as yours. ...but I'm having it done at our private hospital as a NHS patient so best put my posh underwear on for that !!
Hoping letrozole still doing it's magic
Xxxxx

[Carolyn52]

Hello Renee
Sorry u have such pain but rads will sometimes cause that for a few weeks before it gets better.
Hoping you are being well looked after by the family and getting lots of slobbery kisses from the dog too !!
Hugs xxx

[Carolyn52]

O funny face ...glad u got some sleep. .5 hours is better than nothing ..sounds like u r on the mend but a slow process of recovery! !
2 years ago ..I sneezed and cracked a rib ..took a month to heal and it was horrible as I couldn't breath without pain. Convinced myself with fear it was something cancer related though !!
Hugs xx

[jazmia]

HI FF 

GOOD FOR YOU AND KEEP GOING ,YOU WILL GET THERE IN THE END

LOVE RENEE 

[funnyface]

Thanks ladies for holding my hand. Last night I decided to be brave and try to sleep on the sofa. I took my muscle relaxer and my  pain pill, waited 30 minutes and gave it a try. I was able to do it with only a few twinges of pain getting comfortable. I slept 5 hours with no pain!! Then it was time to get up. It was a slow process, but I did it all by myself. When I would get pain I would stop and relax. The good news was these pains were quick and sharp but nothing like the ones I had been having! I have another chiro appointment tomorrow. Hoping this one will be the last one. FF

[rosie53]

Hi ladies, not posted for a while been taking a little step back but have been reading most posts. 

Funnyface, I had to jump on to congratulate you on your forthcoming grandchild, so pleased for you. Sorry to read about the horrible back pain you have been struggling with though, hope it soon settles down.

Nicky, congratulations on becoming a grandma/nana, I am so looking forward to having grandchildren but can't see it happening anytime soon! 

Hi to all the other boney ladies old and new, hope you're all keeping well and warm now the weather is changing. 

Hugs Janette xxxxxxx 

[jazmia]

hi FF,

nice to hear from you although not in a perfeect situation ,but at least you know what it is and that must be a relief for you,so carry on with the treatment and you will soon be good to go again.

i have finished my rads last friday and since felt lousy ,so tired i could sleep on the clothes line ,plus this horrible nausea to deal with which i am hoping is from that ,

keep you chin up girl .

love reneex

[avrelia]

Thanks you so much about your kind and tender support. At least I know now that it is not that horrible. However I am going to have a word with the oncologist first to see why does she think I need that treatment at that very moment. Hugs to all. 

[funnyface]

Averlia, I'm sorry to hear about your second cancer, but glad surgery could fix you up. Thank goodness you don't have to add more chemo. I don't like radiation. I've only had it for 2 weeks to shrink a tumor that was closing off my bronchus and had collapsed my lung. I got pneumonitis from the rads and landed in the hospital. The swelling of my lungs lowered my O2 levels which made my heart beat rapidly. The heart not beating correctly then made my O2 levels go down more. I was in a vicious circle! Rads scare me now! After all the problems healed I did have great results. My lung reinflated!! Yes, I would do rads again bc of the benefits.Best of luck. FF

[funnyface]

I made a post about my back but apparently it is out floating around in the world. Thank you for your concerns and the congrats that you have sent for my granddaughter. It is not the spot of cancer acting up. I have a dislocated rib, pulled muscles, tendons or ligaments.I 've hurt my back before, but never the pain I was getting. I'm on muscle relaxers and oxycondone. Monday night I slept 9 hours in a row in a chair. I haven't slept 9 hours in many years. Yesterday, I went to the chiropractor and going again this morning. Today after chiro, I'm going back to work. My back is tender when sitting and walking. The muscles are sore after all the jolting and clenching pain. I slept in the chair last night again, bc I'm afraid to lie down.That is when the pain hits. I'm going to give it a couple more days before I try my bed again. I probably won't post much for a few days because the muscle relaxes knock me out. Hugs! FF

[ramade]

Ff, how are you? Are you out of hospital and out of pain now? Do let us know, I'm thinking aboutyou, you're such a trooper!

Big hugs

ramade xx

[ramade]

Hi all, I said I would report back on my spine radiotherapy. Now nearly 2 weeks after it I feel great, I was put on steroids for a while but off them now. I am now in no pain. Looking back I don't know how I carried on with th amount of pain I was in for a year. I am now back on chemotherapy. Good luck to you all whatever your decision about this, mine wasn't an option as it was starting to infiltrate the spine.

love to all as ever

ramade xx

[PMOL]

Hi Averila!

hope you are feeling well after the op.

i've got mets on my spine and pelvis and in the summer my onc sent me for some radiotherapy.  I honestly didnt think I needed it and as it's something that you can't have indefinite, didn't want to 'burn my bridges'.  Anyway, had 5 sessions and has to be said have been great.  Felt a bit uncomfortable during the treatment but once i did the sessions it has improved a lot and made me realise that I was in more pain than I thought.

you have to do what feels right for you so don't let anyone make a decision for you

xxxx

[LYNDYLOO]

Evening Funnyface

Hope your back is feeling alot better now.

Congratulations on your forthcoming grandchild.

Hope your treatment is going OK.

Linda