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Bone mets - please join in

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Re: Bone mets - please join in

My grand daughter aged five was due to have the nasal flu spray at school last week but was told she would have to stay away from me for two weeks as it is a live vaccine and anyone with a suppressed immune system could be very ill.  So, bless her, she is going to have the. ORmal jab in the arm as she doesnt want to make nanny ill.  Good luck to those having their jabs.  I had mi e two weeks ago and no side effects other than a runny nose.  Last year I had the cold fro hell, so you just dont know.  X

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I had my very first flu jab last year and was lucky not a sniffle but I am careful with people around if they have colds etc and so sad but use a lot of hand sanitizer if I go out in public places .
Xmas 2014 ..I had swine flu/ similar and was literally off my feet for four weeks ..bones been aching ever since ..and I still blame that for my secondaries ..low immune system gave the little cancer cells to activate !!!! Ha ha.
Carolyn xxx
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I had the flu jab when I was on docetaxel and there wasn't any problems from my oncologists point of view about having it whilst on chemo.  I was advised to try and have it at the end of the 21 day cycle just so my immune system was on the up.  However that year I got the most awful cold, far worse than I have had for many years so decided not to have it last year.  Am still undecided this year as to whether I have it or not.

Nicky x

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Stillhere, Cracking up at the Tic Tac! The only vaccine I haven't had is the Zoster for shingles. I wish I could get  it. 

 

Carolyn, Only you could burn your eye that way!

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Still here
You are very wise to check everything with oncologist as you are on a trial and a fairly new treatment plan but I've just been a brave little soldier and got my jab out the way in readiness for winter .easy peasy lemon squeezy ..didn't get any se last year so hope its ok this tine.
Xxxx
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I've had one (flu jab), Stillhere. I'm afraid I didn't even think about it (on Cape) - I have had them for years now and just went along! I had a bit of a painful arm afterwards for a couple of days, but other than that, no se's. If anyone is on chemo though, they probably should ask first! Do what I say, not what I do! Smiley LOL

 

Hugs. Barton.x

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Try First Defence, or Double Defence for preventing colds, yyou can get it from boots

its a nasal spray which works well for me also it helps stop the cold progressing so, itsa good thing to try.

 

i too check everything with the onc before using it...best way Stillherexx

 

Moijanxx

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Yes, best to check with the onc re any vaccinations, as if you were nutrapaeninc a live vaccine could be bad news,. 

 

Ff regarding neulasta/Neupogen/filgrastim,this works whatever drug you are on usually. But for some they say its not needed.

 

all it does is stimulates the bone marrow to produce more white cells. Which raises the immunity. Regarding the numbers...my onc said that if you fall below 1 (nutraphil) then they wont give the chemo. 

 

1.9 sounds not too bad. Mine was 5/6 last ime am on filgrastim.

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Hi anyone thinking of a flu jab! I've just had one because of the low immunity on Ibrance problem. My docs have said that the adult jab contains a "killed " vaccine so is ok to have. The child's one in the nose is a live one. Please check with your Onc but it may be a good idea. I'm so anxious to check everything with my docs that I practically phone them if I want a Tic Tac!!! I'm in a low blood count phase and have had no reaction to the jab xx

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Flu jab done ...blood tests done ready for denosumab jab on Wednesday . For any new ladies here ..denosumab jab and flu jab a doddle even compared to blood test !!
When I get back later ..some online retail therapy me thinks ....but not even the Xmas word thought of yet .
Carolyn xxxx
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Carolyn I've had my head over a bowl of boiling water with olbas oil in but it hasn't helped, to be fair though maybe I should do it more than once!
Janette xx
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Hello ladies
Hope your cold is better Jeanette ..we all dread them ..sneezing and cracking a rib or coughing hard and wetting our self !!!!!
Have u tried putting Albas oil in the bath ..it helps. One thing that doesn't work for me is a drop on the pillow ..burnt my eye once!!
Sharon
How are you ..are you going for your chemo today ?
Carolyn xxxx
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Morning ladies.
Moijan, no more awareness days until next year as far as I am aware. Do you live locally?
Bandit, thanks for the info, gosh it doesn't sound like an easy treatment to be on,...... (not that many are!) I hadn't heard of it until last week, I've heard Ibrance being talked about on the forum but didn't connect the two treatments.
I'm still full of a cold! Was lucky last year I escaped with none even though my hubby and daughter got them. I've had a flu jab and drink fresh lemon juice in cooled boiled water each morning so I get a good shot of vit C each day but the blitter got me this time!
Hugs Janette xxxx
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OK girls 62 here. On the ice I put Yaktrax on my hiking boots. Just make sure you take them off in the house or you will slip on the floors . I don't wear dress boots on the ice. Yaktrax are on Amazon. Bandit I asked my onc about a neulasta injection and I really didn't hear her response well. I swore she said it wouldn't work with this treatment. Do you know? My count was 1.9. Does any one know  how bad that is ? It's never been below 2.7.

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Hi Natalie, glad you enjoyed he conference.my chemo day was Thursday, so was sad not to be able to attend.

 

Regarding Marijuana oil, I agree about there not being enough evidence...problem is, the drug companies are the ones funding research and this drug wouldnt make them any money, so unless a charity were to fund the research, there will never be any 'evidence'. And drs wont prescribe drugs unless research backs it up!

 

however, there is plenty of anecdotal evidence out there...I believe in it, myself!

 

are there going to be any more conferences?

 

Moijanxx

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Hi Bandit,

 

was reading your interesting journey. So pleased for you that you are on Ibrance. 

Like Ff says, Neulasta/filgrastin  is a really good idea, if the onc is happy to give it to you.

 

im on Eribulin and since ive had Neulasta/ filgrastim) ive been clear of colds and flu.

 

my onc has warned me not to have 'live ' vaccinations whilst on Eribulin, so I have refused the flu and pheumonia vaccinations...you may want to just check with your onc, to see what he thinks...(I understand ibrance is more fierce at lowering the white cells than Eribulin and a live vaccine could cause problems.)

 

However, I have used for serveral years now, a product called ' first defence' from Boots, who have also brought out one called 'double defence' it works by stopping colds/flu before they get a chance to grow...all these bugs start in the nose. Once theyve grown in the nose they go down to the throat/chest.

 

'First  defence' is an oil which you spray up your nose and it clogs the bacteria before it can grow.. I keep one in my handbag and use it in crowded places

 

I checked it with the pharmacist but run it past your onc first,...especially if he wont give you neulasta.

 

Best of luck.

 

Moijanxx

 

 

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Bandit ..I think you need to get the flu jab and maybe take vitamin c each day like I do to avoid colds and things .
Icy pavements are always a danger so don't be afraid to be careful and avoid them as much as possible etc.
I'm 64 so only just a little older than you.
Xxxx
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Brilliant response FF just what I wanted to hear. I really don't think there is any point struggling on if one is just a "sick" person. Ditto Carolyn52 I don't want to become an "old lady" haha fearful of going out and about however I guess I will just have to grow up a bit (nearly 63 after all) & be a tad more careful. Bandit xx
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Bandit, My white count  ran low on gemcitibine, always needed neulasta injection. My white count on palblociclib has just been under the low limit. This time it was too low and they said not to take the last two pills. Must have blood work before I start back up. I work at our local senior center. It I s a day program where seniors come to socialize. Games, exercise, yoga, fine arts class, entertainment, information sessions, etc. It is a germ factory!!!! I haven't had a cold in over 3 years o r any other illnesses. My husband has had bronchitis a couple times each winter and so far I haven't caught it. I haven't limited myself on any socialization. I might if I was completely wiped out if white cells. I'm 1.9 now. I have been running 2.6 the last 15 months! Enjoy those holidays! 

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Thanks for response Natalie.  Re Palbociclib & Letrozole I have only been on this for 3 days and so far so good.  I have a lot of arthritis and am always in a lot of pain and think in a funny sort of way this helps because hopefully I will find the expected joint pain tolerable.  The SE's with this combo are hard and my white cells will be on the floor which means I may have to limit Christmas parties and not knowingly mix with people with infections. This is tough as I am quiet sociable and enjoying meeting friends and going out.  I have lots of pets including tortoises, ducks, sheep, cattle and dogs and I draw the line at not interacting with them.

As I am on a trial there are so many things I can't take or do but I am hoping it will work well and therefore make the restrictions worthwhile.  I will of course keep posting and let everyone know how I get on and I am of course interested to know how everyone else is doing - hopefully we'll!

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Ha ha .. laughing this morning at myself ..woke up with a finger that won't bend so first thing hubby said was ...no texting for you today as its my typing one !!
Aagh well ..never know what's going to happen everyday but I will manage with the other nine no doubt.
Hope everyone is enjoying a good Sunday breakfast of something nice.
Carolyn xxxx
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 Sharon, Hoping you are hanging OK and pain free! Take care of you! Spoil yourself with a little retail therapy! FF

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Hi Carolyn, I'm feeling a little better than I did this morning, I've stunk the house out with Olbas oil 😀

Think I've answered your question about excerise in my last post to Bandit? I have mets in my hips too and walking helps keep them from stiffening up I think. 

Hugs Janette xxxx 

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Hi Bandit, no I don't think there is a way of accessing what was covered at the awarness day. Really the diet and exercise discussion was the usual, everything in moderation plenty of fruit and veg etc. I get your concerns regarding excerise and breaking something, I don't do excerise in regards of going to the gym but I do go for regular walks, I asked my onc about my walking and if would cause ware and tare on my hips and she said no it wouldn't but just know your limits  (listen to your body!) It's good to keep things moving. 

Hope this helps. I see your already on the combination of letrozole and Palbociclib, do you have anymore info about it you could share? 

Hugs Janette xxxx 

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Sharon
Are u ok? Radio silence for a few days so hoping u r just resting from chemo this week.
Hugs xxxx
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Hiya Jeanette
Sorry you have the sniffles ..horrible ..do u take your vitamin c everyday ? I'm due my flu jab next week and hopefully it will help.
That day at christies sounds good and hope u have learnt some good tips . Think we are all waiting for ibrance at the moment as the next line treatment after letrozole .
Do they recommend exercise with hip bone Mets ..I work on theory if it hurts ..stop!
Hugs xx
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Hiya bandit
Having bone Mets is the fear factor of breaking something isn't it? I have extensive ones but have had ten monthly bone jabs now and hope they are stronger !!
Last winter I lived in fear of slipping on ice or something ..so wore rubber sole boots and shoes etc etc.
Xxx
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Conference sounds fascinating.  I have just started Ibrance with Letrozole on a trial which means taking supplements or using alternative/complementary products is VERY limited.  Is there some way those of us who did not attend the conference can access the diet and excercise information?  I have bone Mets and fear doing anything at this stage that may to break a bone or snap a rib.  Hope you are able to make good use of all the information you have been given.  Bandit x

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Morning ladies, hope everyone is keeping well......and warm! It's that time of year with the weather changing, I'm full of a rubbish cold! Snotty nose, stinging head, tired the full monty....oh what joy! 

Well I went to the Secondary Breast Cancer Awareness Day at The Christie on Thursday and was a great day, very informative and helpful, met some lovely ladies too.

There was a talk with a clinical researcher which was really good, she spoke about Palbociclib  (Ibrance) and how it is now being used along side letrozole, trials show that given together the survival rate increased! (Something I will be bringing up at my next onc appt in a few weeks).

There were also question about cannibis oil and it's benefits, however there is still not enough evidence to support starting any proper research. 

There was lots of other things discussed too like pain control, diet and exercise, emotional support etc. 

Hugs Janette xxxx 

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Good afternoon Sharon
How are you feeling today ? Hopefully with a bit of a chemo break you are a little bit better. Dull drab weather today doesn't help the mood though.
Hugs xxxx
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Thanks FF ..our clocks change too later this month so we get dark nights (boo hoo) and lighter morning's.
Hope u wake up in a few hours to loads of cards and pressys .xxx
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Carolyn you are 5 hours ahead of me in time for now. Soon we change time, called daylights savings time...we fall behind an hour...then in the Spring we spring ahead an hour.

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Hello Leemas

I remember you as Sameelee as stresshead has said rant and rave as much as you like she has given you good advice.

You say you are starting Capecitabine you will find a good thread on Treatment and medical issues you will find lots of information regarding side effects and lovely ladies that are on it.

Try not to worry too much about your mets I have many mets in bones ribs liver and lungs also many skin mets. I will not let the cancer get me down I have nearly done 4 years and intend staying here a lot longer. I have been living with a tumour in my sacrum and I have cancer cells all up my spine since I was first dx so all I will say is watch for pain in the spine and inform your onc we have to be careful of spinal compression.

But try to think positive and don't let the dreaded 'C' get you down.

 

Love and (((((hugs))))   xxx

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Hi Carolyn thanks it was tough last year wouldn't of thought I'd be back to work and the gym I must admit going to the gym has helped loads with the aches from the letrazole. The summer house was a waste of money we never went in it but it looks nice haha. Take care love Julie x x x
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hi ladies, thanks for your tips on the 'head/neck' problem. Unfortunately, this doesn't feel like a stiff neck..it is a wierd sensation that is always there sort of at the side but creeps up to the base of my skull at the back. That is what's worrying me. I havent had headaches as such but sometimes when i lie down my head feels like its 'swimming' and about to explode...so hard to describe it. Intersting to hear difering opinions on massage...i was always told to avoid it as it cold spread cancer cells. I have had reilki and refexology bt woul;d love a massage. Wii ask my therapist at my next visit.

Leemas...welcome back. Dont beat yourself up, its natural to feel down, coping with what we have to. I too feel like you..never seem to be getting any good news but you will find some if you look hard enough i'm sure...my last bit was being told i was stable. Its horrible living from scan to scan especially when you get symptoms in between. It is always hard to be optimistic but try not to dwell too much...fill your time with people you enjoy being with and doing things you like...give the treatment time to do its stuff......oh, if only i could practice what i preach!!!   Just wanted you to know we are all here for you..have a rantand rave any time you like. xx

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Jeanette, Glad the MRI of your head is clear. Hoping you can find answers to the headaches.

They have a massage therapist at my cancer center. I would think  gentle massage would be OK.

 

Leemas, Post as often or as little as you need. Rant if you need, support where you want, ask questions, share info, whatever makes you feel better! 

 

Hi Julzd!

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Hi to everyone here; I signed on ages ago, when first diagnosed with bone mets ( a year ago now) with the username Sameelee3. Have been popping back and finding out loads of information from you all, but I think, if it is ok with you all that it's time I joined in properly. I was taking Exemestane for 8 months but it wasn't working, so now have the original spine mets, plus new ones that are causing numbness in my right foot. Also in lung and liver; feels like it is progressing quite fast, which is a bit scary.... Well, very scary to be honest! 

Have taken my first two lots of Capecitabine today...... I know that some of you are taking this chemo, so it will be useful to share. Oh yes.... I was told yesterday that there are cancer cells in my spinal fluid; had a lumbar puncture last week. 

If I analyse all my oncology appointments since diagnosis, I've not had one piece of good news...... Am finding it hard to be optimistic at the moment. 

Best wishes to you all, 

Leemas

xxx

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Jultz
It's good to hear from you and that after a year of non stop chemo ..you are back working and moving on.
Hope u enjoyed the summer house and that it hadent just become a " dumping ground" for stuff that doesn't fit in the house though !! Hubby has a man cave but keeps the keys in his pocket 24/7 so I can't dump things in it.
Hugs xxxx
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Hi Marirose, yes The Christie is one of the leading cancer hospitals in europe. Looking forward to going, I have been fo - warned by my friend though who went last year that as well as being really informative it can also leave you feeling a little down as the reality of what we are living with can hit home! 

Hugs Janette xxxx 

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Janette

Your Living with Secondary Breast Cancer Day at Christies sounds great. I read somewhere that Christie hospital is number one in the country. My chemo unit ring there for advice instead of our local Cancer hospital.

I hope you find it very useful and relaxing Love and ((((hugs))))  xxx

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Hi Carolyn I'm doing ok thanks. I've been busy with work I click on and still follow you all I hope your all doing ok and Sharon hope you get sorted and feel better soon I've been thinking about you. I've just ate some oreos haha love Julie x x x
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Jeanette
Glad to hear from you but sorry about the headaches and neck pain.
I bought all new pillows for the same reason too ...it's been five weeks since my denosumab injection ..it's due next week which will b six weekly and I have felt so much less achy this week or so ..I just felt that four weekly was just too much for my bones ..and needed more gap between it . I haven't had any neck ache for a couple of weeks either .
Hugs xxx
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Yes will do. 

Meant to add in my last post, I'm off to The Christie hospital tomorrow for a Living With Secondary Breast Cancer day, it breakout sessions including Living with uncertainty, relationships and communication, fatigue management, and a few other different sessions. iv signed up for the fatigue and uncertainty one. There is a talk from one their treatment and development research Drs , a Q & A session. 

Will let you all know how it goes. 

Janette xxxx 

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Yes I've got mets all over and I asked my onc earlier this year and he said fine, just tell them to go easy on any areas that are painful.
But sometimes I think my onc is a bit too chilled so defo ask yours first! Helen cx

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Hi Helen, I have thought about massage but I'm always a bit wary because of my mets?? I know I have them in my spine but don't know to what degree  (I've never wanted to know) I see my onc later this month so I think I will ask her about me being able to have massages. 

 

Hugs Janette xxxx 

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Hi janette
Have you tried massage on the neck. I've suffered for years with neck trouble, my discs up there are. A bit worn but nothing they would do anything about just natural wear and tear. The thing that works best for me is a neck and shoulder massage once a month. Takes away the tension that build there xx

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Morning ladies. 

Hi Carolyn, sorry I've been quite just been a bit busy lately plus I'm still struggling with these headaches. I do read all the posts (bone thread)........I don't like areos either 😀

Hi Sharon, hope your doing ok, you've been through the mill just lately I'm sure things will turn around soon for you  (((())))

Hi Stresshead, as I've already said to Carolyn I've been suffering with headaches for a while now, I've had an MRI on my head which come back clear of anything sinister. I have had a stiff neck for months too, blamed it on my pillows so bought some new ones but I still have neck pain. 

Well off to work now ladies, take care ladies, keep those bones warm now the cold weather has arrived! 

Hugs Janette xxx

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Sharon
How are you feeling today ? Day at a time ..we are all sending cyber hugs to you.
Jeanette and Julz
Assume radio silence is because you are both well and bungee jumping, marathon running and pole dancing !!!!! Ha ha
Hugs xxxx
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Hiya stress head
Opening my hugs cupboard again and sending you loads for clear scan results and to put your mind at rest .. I think your name sums us all up over all these things that happen to us .
Everything is a nightmare ..mine very little but for the 2nd month they haven't got my brand of letrozole again and I hate the cheap brand I get palmed off with .
Hugs xxx
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Sharon, hope you feel a little better now and strong enough to have yoour chemo. I fyou go ahead with the drain i'm sure that will help. Will be thinking of you.

Carolyn...you're not on your own...i also hate oreo's!!

On a more serious side...please can anyone help me, especially those of you with neck, head, brain mets.

For the last 2 months or so, just as i was at the end of my chemo, i developed a neck pain as thogh i hadf slept funny or had 'cricked' it. having lasted this long it is now a major concern, especially as my skin mets have also broken down. I told my onc and he added my neck to my next ct scan which i have just had. I dont appear to have any other problems...vision, balance, swelling, incontinence, major headaches and i cant feel any lumps.It is just like a dull ache which becomes more painfl if i stretch my neck to the sides.

I am terrified that i have have spread to brain/meninges and wondered iof anyone experienced this symptom.

My Dr at loros tolsd me to try painkillers but nothing has really had any effect.

I would be grateful for any info. Many thanks ladies. xx