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Bone mets - please join in

lillybobs
Member

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Marirose
Member

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Thank you Julie feel much better now I have a friend who I have met through having Denosumab she had a raw deal last time she went and it has been good chatting with her because she has not seen the new onc only the one I saw today so we do have something in common with each other. 

 

Love to all who feel upset with onc's xxx

JulieD
Community Champion

Re: Bone mets - please join in

Hugs for you Marirose,

These types of days are horrid and leave you unsettled and worn out. Hope you have a good evening and can relax a little.Good luck with further investigations, hope tings are sorted quickly for you. xx

 

 

Marirose
Member

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Thanks Chocolates for the update on Helen glad she has some improvement and feels a little better x

 

Well what a day I have had been to hospital for usual checkup and Denosumab jab we have a chemo unit that administers other jabs as well as all chemo treatments. I have a new onc who I met for the first time last month and because she is now to be my regular onc she wanted to change the day and routine that has normaly been the way things have been done consultation at one department followed by a walk to another department for treatment she wants to do them both at the chemo unit where I have my Denosumab. Sounds like a good idea but my appointment was 3.15 (normally late morning) I knew the unit closed at 5.00 and after waiting 1hr 20mins I didn't know how I would be able to mention my problems in so little time. The registrar was great I mentioned I had another lump in my breast and I was due for a CT scan would the scan pick it up as I have heard it doesn't pick up skin mets she examined me yes there is another lump 1cm/2cm she would get the onc who was there to take a look -- but she had gone home. I was supposed to have had a photo taken of my skin mets -- they had gone home I would have to come back tomorrow for my jab and photo taken. Think they felt sorry for me and made it priority to get the prescription through and although it was 5.40 I got my jab the girl said it was unusual because they finnish at 4.30.

Sorry to moan so much but I needed to get it out I felt dispair I needed to get my routine scan and the lump looked at and at least I managed it.

 

Thanks for giving me time and reading this. Love to all xxx

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

    

springsummer
Member

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i have been away and have just seen the news about catlady.  Sending you my best wishes for a speedy recovery lovely lady. SS

Kenni
Member

Re: Bone mets - please join in

Hi Sallyhennypenny and Jam
Thanks for getting back to me. It gives me the assurance that radiotherapy might be good for me.Two weeks ago I can't even walk due to the pain from left hip down to my leg. Have acupuncture then and seem to settle down but now it comes back again. Fingers cross that it will help me as well like you, Sallyhennypenny. Kenni x

Tinkerbelle
Member

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So sorry to hear that our lovely Helen is back in hopsital - I hope things improve soon and that she is being looked after well.  (((Helen))) x

scoobiesue
Member

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Ongologist today. I know it is likely to be a review after radiotherapy on my hip. Why do I feel so sick at the thought. Have a good day ladies . Thinking of you all and sending hugs. SSue xx

Jam
Member

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Thanks Chocolates more hugs Helen to keep you going. xx
Jam
Member

Re: Bone mets - please join in

Hi Vicky sorry can't help with the leg weakness. Have you been given any exercises to help. I didn't have any symptoms luckily was found when I had an unrelated problem. My spine is affected at T5/6/7 possible signs at L1 T12 and sternum but could be due to treatment. Good luck and hope it improves soon. xxJanetxx
rosie53
Member

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Morning ladies, glad to hear Helen is a little better this morning, thank you Chocolate for the update.

Hope everyone is doing okay, take care.

Hugs Janette xxxxxxx 

belinda
Member

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Morning Chocolates and everyone, that does sound better news of Helen, so pleased she seems a little brighter. X
Chocolates
Member

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Morning ladies, Helen seems a little brighter. She thanks everyone for their love and messages. She misses you all and says she'll be back on as soon as she can. Welcome to our newbie's. This is a wonderful, supportive place to be.

Right I'm off to work, hope everyone is doing ok.

Much love,
Hxx
aunico
Member

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Jam sorry not kemi! Not awake this morning!

aunico
Member

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Sorry that was for sallyhennypenny and keni.

aunico
Member

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Hi may I am how long it took you to get back to normal? I've had that treatment and am struggling with my leg being very weak.

 

Vicky

Jam
Member

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Hi Kenni I have had radiotherapy on mine too 2 years ago and touch wood every thing has been stable since then. I had no problems from it and it gave me reassurance that we were fighting the nasty little blighters. Hope this helps xxJanetxx
LemonDrizzle
Member

Re: Bone mets - please join in

Just got home and seen that you're back in hospital Helen. Hoping that things go more smoothly this time and they get on top of things quickly and efficiently. Thanks Chocolates for letting us know. Love and hugs
LD x
sallyhennypenny
Member

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Hello Kenni, I discovered I had spine mets in May 2014, when I had a spinal cord compression near the bottom of my spine.  this is a medical emergency and I had to lie flat on my back and not move for 5 days while they stabilized my spine with radiotherapy, I think I had 5 rads.  the result for me was amazing, and I have returned almost 100% to normal.  My symptoms were pain in my back, hip, down my legs, then numbness in my legs, and all that has gone.  

 

I hope this helps xx

Kenni
Member

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Hi all,

I have been a member here for a while now but rarely post but find inspiration and support from everyone who posts her and shares their experiences.

I had breast cancer in 2010 but unfortunately returned in November 2013 in my liver and bones. I have been having chemotherapy (taxol), Cape tablets and zometa treatment since then.

So far the treatment has been going well with the cape tablets and the cancer marker shown a significant reduction. However, when I saw my oncologist on Monday my latest bone scan showed the hot spots on my lower back had increased and I have been having dull ache constantly which can be control quite well with codamol. My oncologist has now suggested that for the time being I stop my chemotherapy treatment (Cape tablets) and have a week course of radiotherapy on my lower back area to ease the progression of the cancer there.

I have read that the radiotherapy can cause other damage such in the bone marrow, kidney etc and feel very concern about it as I am an anaemic. I am debating with myself whether I should go through with this or not and is driving me mad.

Could I please ask for your advice and any experiences from anybody who has been through anything similar.

Thank you all in advance for your contributions as these forums have helped me greatly over the last five years.

Regards to Helen and hope she gets better soon.

Kenni x

Orse1970
Member

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Just wanted to add my ((((hugs))))) to all the others that have been posted on here for Helen... Hope they get you sorted soon..

C xx
Jam
Member

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Huge hugs to Helen from me too. xx
Marirose
Member

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Oh no poor Helen I do hope they can give her some relief she is such an inspirational lady to us all even when she wasn't well she started the crazy cyber cafe and her input into so many things we all love her so much and send her all our best wishes to a recovery from this blimp.xxx

Thankyou so much Chocolates for bringing us up to date about Helen xx

Lets all go to the cafe and rise our glasses to Helen xxxx

Marie123
Member

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Thank you Chocolates. Helen I am thinking of you and praying for you. Sending you love and hugs.
Marie xxxzz
sallyhennypenny
Member

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Just wanted to add my hugs for Helen, thank you for keeping us posted, chocs.  Helen I hope we will see you in the cybercafe soon xxxxxxx

Barton
Member

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Thanks for the info, Jo. I haven't joined the live chat yet, but will get around to it one day! Thanks. Barton.

Barton
Member

Re: Bone mets - please join in

Thanks for the update on Helen, Chocs. So sorry to hear she is poorly again. I hope they are treating her well this time! (& definitely no "poo-gate" this time!). If you contact her again, please let her know we are all thinking of her and wishing her well. Hugs, Barton.x

Sarn123
Member

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Hi all very sorry to hear about Helen wishing her a speedy return home, sending lots of love and kissesxxxx hope everyone else is having a good day 🎀