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Bone mets - please join in

Marirose
Member

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Fantastic news that you are now back home Helen you will be able to rejoin your crazy gang at the Cafe we have all missed you xxx

 

Sarn123
Member

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Hi marirose i hope all is well, I'm off for my ct tomorrow I'm also on e/e and also have a bad feeling that it's stopped working! Can I ask you do you get bad diarrhoea on this treatment I'm really suffering with it bad this past 2 weeks, I see you said you have to wait for results I always ring bcn for results after 1-2 days maybe it's worth ringing as I find waiting is the worst bit, thinking of you sarn xxxx
Sarn123
Member

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Hi all fantastic news about Helen glad to hear your on the mend and back home hugs sarn123 xxx
scoobiesue
Member

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Helen you must be so happy to know that you are surronded by such love. Hope you dont mind a newby adding her good wishes. Going back to school next week. Looking forward to seeing everyone. I have taught 40 years and although I retired officially last year I have done some examination work this year. Time now to find other things to enjoy. Enjoy the sunshine. Hugs to you all. Sue xx

rosie53
Member

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Morning ladies, another glorious day here, it's soooo warm but I'm not complaining we have to make the most of it!!

CT today.....so hunt the vein begins 😣 

Enjoy the sunshine ladies but take care 

Hugs Janette xxxxxxx 

PS 👋👋 quick wave to our lovely Helen xx

Gronwin
Member

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Great news your home Helen x
nicky08
Community Champion

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So glad you are finally out of hospital, Helen. I'm sure you need time with the family right now and to recover some strength. Take it easy on yourself and report in when you feel ready.
Hi to all other mets ladies. I hope the hot days and nights aren't disturbing you too much. Make sure you keep covered up, or high SPF, if you are on any type of chemo including Capecitabine.
Take care all.
Nicky x
Ps sorry for the long absence I've been away on holiday, a lovely week with the family spent in Menorca - which we all needed. X

funnyface
Community Champion

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YAHOO!! Glad Helen is free!!

JulieD
Community Champion

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Welcome back Helen, we missed you xx

springsummer
Member

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yes, welcome home miss catlady. so glad to hear you are coming home. i think we all miss you here xxxxxx

LemonDrizzle
Member

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Great news. Welcome home Helen x
sallyhennypenny
Member

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That is great news, take care Helen, put your feet up and watch Wimbledon (if you like it, that is). xx

Marie123
Member

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That's wonderful news about Helen, yippee . Marie

belinda
Member

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Oh I am pleased, brilliant news. Rest up Helen. X
Nearly school summer hols Chocolates it will rain then, it's the law, meantime stay cool! X
rosie53
Member

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Yeyyyy!!! That's fab news Chocs, thanks for letting us know, looking forward to her posts soon.

Hi to everyone hope you are all enjoying this glorious weather.....not looking forward to bed time though might have to kick the other half into the spare room 😉

Hugs Janette xxxxxxx 

Chocolates
Member

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It's too hot!!!!

Ladies, Helen is home - yippee!!! She'll be along in the next couple of days once she's rested to tell you all about it. In the meantime she thanks everyone for their support. It made a huge difference.
Be careful in this heat everyone and please rest as much as you can xxx
LemonDrizzle
Member

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Thanks for letting us know Chocolates, sending Helen lots of love x
belinda
Member

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Thank you for the update Chocolates, hope Helen is home soon. Stay as cool as you can everyone. X
scoobiesue
Member

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Marirose. I feel for you the waiting time is hard to live with. Sending you hugs. Hoping for a positive outcome. Sue xx

Marirose
Member

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Thanks Chocolates we are all grateful to you for information about Helen it is good she knows we are sending her our love. 

 

Sunday I went for a CT scan I was due for one it will be 12 months now on e/e my other 3 scans have all been stable but I have an awful feeling this one is not going to be the same I have felt another lump in the left breast where I had my first in 1996 and then iin 2014 I have a tumour on the chest wall and a another in the breast at the same time it was also noticed I have a met on my sacrem now I get a strange feeling from my back. So now I have to wait 3 week on Wednesday for the results its going to be hard.

 

To everyone else waiting for results best of luck xxx 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Chocolates
Member

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Hi ladies, it's just too hot already and we haven't got to Wednesday yet when down here it's possibly going to be 34. Between 20-25 is fine but 34 is not good. It's slowing me down even more. Mixed news I see on the thread about some stable and some with progression. Pleased to see though that plans in place. Fingers crossed for everyone that treatment is effective.

Helen is still in hospital - she's hoping to be out some time this week. She thanks everyone for their love and support. I try and sit with her every evening for an hour holding her hand (virtually of course) and know that she can feel us with her.

I'll let you know when I hear more news.

Hxx
stresshead
Member

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Thanks for the update on Helen Chocs...sorry to hear she's down...not surprising though with all she has been through but glad to hear she's getting better care. Please send huge hugs to her.

 

Bill-Ben....i had docetaxol and capecitebine for skin mets and i have to say it was pretty tough....i had lots of anti sickness drugs as i had been really bad on fec, which really helped but i was still wiped out for almost a week a few days after treatment. Just be kind to yourself and dont overdo things. You may be absolutely fine..everyone reacts differently. I then went on to letrozole but unfortunately this didnt work as my mets returned very quickly. Cant actually say the chemo didnt work as i wasnt allowed to continue with the capecitebine after 10 cycles but as soon as i was off chemo the mets returned which i think stumped my onc..not to mention letrozole having no efect at all. Now on my 3rd chemo, erubilin. Hope it all goes well for you. xx

stresshead
Member

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Hi lalie, i have skin mets and use the thread on treatments and medical issues as well as this one. I was originally diagnosed in 2o11..had chemo, double mx, diep reconstruction, axila clearance and rdiotherapy....everything they could throw at me. In Jan 2014 i noticed a small lump between my 'breasts' and for 5 months it was wrongly diagnosed as a sebaceous cyst so i had no treatment for 6 months. Had more chemo   and then letrozoleand told i was in remission and then 2 weeks later i got a red rash on my 'breast' which spread into little lumps and then spread onto my abdomen. So, like you i am on my 3rd chemo in a few years. Had a scan last week which showed no spread to organs and onc says my skin mets have improved. Its very scary though as you become paranoid ...i'm scared to look down in case i see a new 'lump'. Its also tough to know that when the drugs stop working so quickly there isnt an endless supply of new things to keep trying. Vetry disappointing when the hormone therapy didnt work as i have had all 3 usual ones. Please keep posting as i dont believe there are that many of us about. Best wishes. x

bill-ben
Member

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Morning Ladies hope you all have the glorious sunshine we have here in N. Devon it is beautiful today. I asked my onc. about TM's but was told my hospital don't do them as they are not as reliable as scans. Personally I want scans blood tests and anything else that's going I want to know everything!! Mind she did show me my latest scan pictures of my misbehaving liver and to be honest I didn't have a clue. I'm off to potter in the garden hope everyone has a good weekend xx

belinda
Member

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Thank you for the updates on Helen Chocolates. Roll on end of term for you. X
Sue it sounds as though you are making good progress. 🙂
bill-ben, good luck with the chemo, hope it's kind for you. X
Great news of your TM's lillybobs. 🙂
Looking forward to the cyber cafe weekend. 🙂
Lynnq
Member

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Hi Lilybobs, pleased to hear about your TMs,, remember being so relieved when mine went down, they seem to have remained at between 35 and 40 for the past few months, but I will take that.
Onc has told me that general trend is more important than numbers.
One of the ladies in my SBCC group had an initial reading of over 900, they came down to 400ish and have stayed in that area, she has stayed stable on that number for almost a year!
Hello to the newbies - you have all had good advice from the lovely ladies on here....and hello to everyone else hope you're all as well as you can be.
Xx

Think about Helen every day, hope they're looking after her well in hosp..thanks for updates Chocolates
helen44
Member

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Sending big ((((((hugs))))) to 2catlady, the other Helen - I hope you are receiving better treatment this time. Thinking of you, keep smiling Cat Wink

Love to everyone on here,

Helen x

lillybobs
Member

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Its tumour markers, Sue..its a blood test which looks for a protein given off by the tumour..the higher the level, the more active the cancer is..not all consultants use them coz they're not always deemed reliable.x
scoobiesue
Member

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Delighted for you Dot. The term TM is new to me, suspect I will soon be aquainted with it. Wishing all you lovely ladies a very good wekend. Sue.xxx

lillybobs
Member

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Just back from my appt with onc..positive news, TM's now down to 81!! Before chemo they were 450, 149 at my last appt in march..so good news all round. Next appt mid sept. I had weekly paclitaxol, wasn't too bad at all...thats the only one ive ever had so can't comment on anything else...Dot x
Barton
Member

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Hello Choclates, thanks again for the update on Helen. Glad she is receiving better care this time (couldn't get much worse, really!). Sorry to read she is feeling rather down,  though. I hope she feels more like her usual bubbly self soon.  Sorry to hear you are so tired, too. Hope you get some rest soon (although still a few weeks until the end of term - my sister was a teacher until she retired last year, and I know how exhausted she was by the end of term (and that's without treatment for cancer!)). Hugs, Barton.x

Glo
Member

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Hi bill-Ben
Sorry things are not too good! It's rubbish having progression!
Have you had paclitaxol before? Just that's a weekly chemo and I've had 5 sessions with virtually no SE! Also had cold cap and although have lost a bit have still got virtually all hair, no one would know!
Glo xx

bill-ben
Member

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Morning ladies. I am on here to have a rant so here goes *** ^++++***???:::++****!! That's better. Saw my onc yesterday for results of a scan . My ribs are misbehaving which I thought was the case as I've had some discomfort and my liver has got worse. I've been on Letrozole lately and initially my liver had improved but now it's got worse. Not as bad as when originally diagnosed but worse than it was last scan.I am now having to go back on chemo and having to stop the Letrozole.They are putting me on Docetaxel but I am having to have smaller more regular doses , once a week for 18 weeks, because of the reaction I had to Fec when I stopped eating. I am dreading feeling as I did before when I couldn't eat at all. I don't mind losing my appetite a bit as I have put most of the weight I lost back on but I don't want to go back to throwing up just because of the taste of toothpaste! I shall most certainly be swallowing all the anti sickness drugs this time. Good job I kept all my scarves and hats as the hair will be off again and I was just thinking of getting my hair coloured again so I'll save that money! Last time my hair fell out after I had my brain blasted with radio so was as good as bald by the time the chemo started, I didn't lose hair anywhere else though not even my eyelashes or eyebrows. Anyone of you had Docetaxel that could give any tips on how you got on? Well I feel better for getting that out so onwards and upwards now and love to all of you in the same situation. And love to Helen hope you feel better soon.  

sallyhennypenny
Member

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Vicky, it took quite a few weeks, probably months to settle after the radiotherapy, and even now a year later I occasionally feel a kind of throb at the bottom of my spine, where I had it.  I walk alot and I think that helps - just walking my dogs or into town, nothing major, but about 3-4 times a week.  I like to think any twinges are healing response to the rads, and my scans since have showed healing, so I think that's about right.  When I had the rads it was a horrible time and all a shock.  One of the lovely drs at the time said the rads won't be a cure but can keep it at bay "for years" - I was desparately reading more into everything they said at the time and I misheard her so I said "four years?  Have I got four years, then?"  "No, for years, we don't know how long"...anyway I'm ok for now.

 

Dot good luck today, I had my four weekly review and denosumab yesterday and my TMs are still rising fast - 1,700 last time, 3,000 now!  they assure me that scans trump TMs so as those show stable I'm staying on same treatment, with regular scans (yuk I hate them).  I have asked to see the chief onc for a review though.

 

Helen, so much love and hugs to you, you are so funny on here and keep us all smiling, hope you will be back in the cyber-cafe very soon.xxx

lillybobs
Member

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Morning all! Its my appt with my onc this afternoon..not really expecting a great deal as I havent had any scans, did have my bloods done about 3 weeks ago for TMs...thats the only thing I'm concerned about even though I haven't any new pains to report, last time I had them done they were gradually dropping, so am hoping thats still the case..we shall see, I will post later this afternoon.

Hope Helen is ok and will get home soon, I don't know her but I feel like I do, I have followed her posts for a long time.. she does make me chuckle sometimes with the things she says 😄 I send her my best wishes ♥

Hope everyone else keeping well....x Dot

LemonDrizzle
Member

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Chocolates, thanks for the update about Helen. Sending you lots of love Helen and I'll be joining everyone else visiting you in our cyber world x
scoobiesue
Member

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Belinda. Walking on one stick and trying in the house to walk unaided. I am reassured that progress is likely to be slow. My bone was pinned. I take over the counter painkillers. Thanks for your help. Sue

Marie123
Member

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Chocolates thanks for the update on our lovely Helen, I think of her often.

It sounds like there is quite a lot  of pain out there, please join us in the cafe . The weekend starts on Thursdays . Hugs Marie xxx

Chocolates
Member

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Hi ladies, beautiful day down here - not looking forward to a sweaty night tho!!

Edwina - I'm on denansomab, haven't had any dental work yet but was told that you would have to stop for two months before any work on teeth - lower jaw more of a problem apparently however I know all oncs are different. I would def get in contact with onc for urgent appt to find out what best to do. So sorry - toothache is horrible. Hope you get it sorted soon.

Ladies, Helen still needs our love and support. She's feeling quite down in hospital but I think care is better this time so that's a positive. She thanks everyone for their well wishes and is really missing us. xxx

Hope everyone is doing ok. Can't wait for end of term - I'm really tired now.

Huge hugs xxx
belinda
Member

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Hi Sue I had a fractured hip. I have the pin going down quite far into my femur, held with lots of screws. I wonder if you have also had the bone pinned, screwed, your healing would, I believe, take longer. Are you on crutches? Taking pain killers? X
scoobiesue
Member

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Have any of you ladies ever suffer from a brokeen femur. I am 12 weeks post operative and still in a good deal of discomfort. Would my healing be slower as a result of the bome mets. Thanks you all. I am so encouraged by your courage and caring attitude. Love SSue

Marirose
Member

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Hi again Lalie there is a thread in treatments and medical issues that may help you it helped me. I am not too good with computers I hope you fiind it xxx

 

Marirose
Member

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Hi Lalie it sounds as though you have skin mets or cutaneous mastatic mets. I was told very little when I first got them 18 month ago I had 11 spots suddenly appeared under my breast when I asked what are they I was told they had come from the cancerous tumour BN said some ladies had lost theirs and that was my education lesson over. So I googled it and saw pictures just like mine. I asked the new onc if I was right and she said yes. I do hope this will help you xxx

lalie
Member

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Hi marirose , just read your message and eas curious to know what skin mets are ? The reason I ask is because I have bout five lumps on the top half of my body that disappear when I have chemo and reappear when everything starts to erupt again. I have only just realised this pattern with the lumps and showed then to my onc on Tuesday , he said they were cancerous but said do t worry about them . I start chemo again today , third lot in two years and know they will disappear. Onc said look at them as a warning when they reappear again as we will then know things are changing ? I had breast cancer 2007 then it came back in liver and bones 2013 . On denosumab and up until now not had to have any pain killers fir the bone cancer. Xx

belinda
Member

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Edwina I may be wrong but I think you have to stop bisphosphonates for a time both before and after having invasive dental work. The condition you want to avoid is called osteonecrosis of the jaw.
X
rosie53
Member

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Hi Edwina, aww toothache that's rotten! Can you not get in touch with your onc or bcn to ask what they advice??

My daughter is a dental nurse and I have actually got an appointment this morning for a check up do you want me to ask her and my dentist if they can shed any light on it?

Hi to everyone hope you are all keeping well.

👋 big wave to Helen stay strong hun you will soon be sipping presecco in the cyber cafe.

Hugs Janette xxxxxxx 

edwina64
Member

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Hi everyone I need some advice plesse. Well I have got toothache in my wisdom tooth and the dentist  said because of having denosimub I gave to go to hosptual to have the tooth extracted. He said my jaw bone was thinning. I think you have to stop your injection for a while whil

st you gave treatment....anyone had this? Wonder how long you have to wait...toothache  is a bummer!

JulieD
Community Champion

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I think it was about 10 days. I don't drive so my partner took me. I think a lot depends on how far your hospital is. I know people who have driven themselves so it's perfectly possible. They did give me steroids and anti sickness for the first longer set of rads, though I didn't actually feel sick. I did use aquas cream and aloe vera gel on the area as I remembered from my primary that they helped me feel more comfortable, though the rads for mets didn't burn or make me sore like the primary did but primary rads were everyday over six weeks so much longer. It's quite normal routine to give anti sickness just incase you feel sick as we all react differently. Best wishes x

Kenni
Member

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Hi Julie
Thanks for getting back to me.
Can you tell me roughly how many days before the pain kick in after the radiotherapy? Do you think I should get my husband to take me to radiotherapy sessions or can I drive myself? I was told by my oncolgist that I might feel sick after the radiotherapy and said to take an anti sickness tablet an hour before the radiotherapy? Is this normal procedure?
Kenni x

JulieD
Community Champion

Re: Bone mets - please join in

Kenni,

 

When I was first dx with bone mets I had rads to my spine as one of the tumors was encroaching  the spinal canal, I also had another couple of quick shots to a rib that was giving me pain. The rads helped, pain got better (though it did get a little worse before getting better, which is apparently normal). I did feel a little tired after the rads sessions were complete but otherwise it was easy and worked well. Hope that helps a little.

Julie x