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Bone mets - please join in

Nanofthree
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Re: Bone mets - please join in

Thanks for that Belinda. Interesting about the cold cap. They also say you cant use it if you didn't use it for chemo before. Wonder why that is? Will you always have heart problems? X
belinda
Member

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Good Luck Marie, hopefully much cooler tonight. X
Marie123
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Oh Helen , so wonderful to see your little picture. So sorry you have had a rotten time and yet your humour still shines through. Please come in the cafe, I believe as well as  Wimbledon there is is also a video of last week's Mamma Mia Madness. Hugs to all xxx Marie

PS resting up today, taking part in the ribbon walk tonight .

2catlady
Member

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Thank you ,Belinda and Tink xxxxxxxx thank you for sendin Bear to deal with that "job"!!!
hugs,Helen xxxx
belinda
Member

Re: Bone mets - please join in

Hi Ruth, this is the Macmillan link re scalp cooling,
http://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/hair-loss/scalp...
Both chemotherapies worked, especially Doxorubicin but unfortunately about a year after Doxorubicin I developed heart failure. A couple of chemotherapies are particularly known for causing heart damage, think Epirubicin is the other. But, I'm ok, a little bit slower, on beta blockers and a couple of other heart pills but I'm ok. X
belinda
Member

Re: Bone mets - please join in

Ah Helen, I was so excited to see your name pop up here but so sorry things are not great. The Bob Dylan records have been dealt with, Bear was quickly on his mission. Hope you can get some strength back now. Even if you're not up to posting just letting you know the Cyber Cafe is well equipped with oxygen and tubing so rest up and hope the appointment goes well.
Lots of Love, Belinda. X
Nanofthree
Member

Re: Bone mets - please join in

Thank you Belinda. That is a fair point about the cold cap preventing chemo,reaching all parts and I will certainly consider that when I make my decision. How did you get on with the Doxorubicin and the Paclitaxol? Ruth x
Tinkerbelle
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Have been away and just got home to be greeted by the good news that you are now home Helen.  Rest and let others look after you as you gather strength.  Am thinking of you.

 

Gentle hugs, Tink x

2catlady
Member

Re: Bone mets - please join in

Hello lovely ladies,sorry I've been AWOL from the forum .thank you sooooo much for all your messages and texts xxxxxxxx they helped me sooooo much as I've been in a very dark place.xxxxx

Well to cut a long story short. My C has adapted again after only three months and gone wild😢😢

Went to get lung drained on the Friday back in on Monday as breathing getting much worse so they kept me in hospital.

They were going to put a drain in and talc to stick lungs back to getter but had to stop as no fluid ,just filled with Cancer .
I was now on 24hours a day oxygen.continued getting worse each day so had a blood transfusion which no difference.

The wonderful Rottweiler in high heels at Maggies (Geordiex and juile will know who I'm talking about) was appalled when we told her about dopey onc and how long we have been asking about PARP trials.

So off she stormed and spoke to trial doc who said yes I'll see her. Most were already filled but one wasn't She emailed my onc .so we still went to see onc while I was a patient in hospital.He said I've got a message from K to refer you to trial so off he went to refer me ( k,must put the fear of God in him haa haa)

So we left and never heard anything so again K was on the case. But unfortunately they can't take me as I'm too ill ! Bit of a catch 22 need chemo to improve .....

I'm now on oxygen 24hours a day at home two machines one upstairs one downstairs,with 100ft os tubing to move around house with, everyone trips over it.

My onc even asked if I was a BRCA2 ,God that man ,I could easily ram his Bob Dylan record where the sun don't shine Ahhhhhhh!

So after a lot of ringing and sorting from my wonderful sister❤️. I'm back to see onc..Apparently I've only got two chemos left Taxol and GemCarbo and that's it 💀

So I'm not in a good place at the moment,
I'll bounce back though,huge hugs, Helen xxxxxx
belinda
Member

Re: Bone mets - please join in

I've had three chemotherapies, Capecitabine, Doxorubicin and Paclitaxel. I never tried the cold cap, it had been prepared but I'd already decided against it. Just my thoughts but if I'm taking the chemo I don't want to inhibit where it travels to. My hair has grown back, just as before each time. It's still naturally black, with some grey flecks. But, completely understand not everyone feels the same about chemo, about hair loss, just how I feel. I don't think you lose your hair on Vinorelbine. Whatever you decide next Ruth I wish you well. X
Glo
Member

Re: Bone mets - please join in

should say "baldy patch"
Don't know how to edit my post!!!

Glo
Member

Re: Bone mets - please join in

I have found the cold cap quite relaxing to be honest. Some people struggle with it at first but once you get used to it, it's fine. I have very thick hair and I know I have a bit of a baldy pack on too no-one else does! I have another 6 sessions so hopefully it doesn't get any worse!
I have had very few SE, some stomach ache, tiredness but one the whole it's nowhere near as bad as I initially thought. I was diagnosis with secondaries from the start nearly 5 years ago and this is my first chemo!
Good luck Glo xx

Nanofthree
Member

Re: Bone mets - please join in

Thank you Glo. I did wonder about the cold cap. Is it very uncomfortable? Would anyone notice the thinning or is just that you are aware of it? They did say something about chemo weekly. I wonder if I am getting confused and it is paclitaxol. Sounds ok if it is. Thanks for your help. X
Glo
Member

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Have you had everolimus/exemestane yet? Although I think this is prob used before Cape and not after.
I am on weekly paclitaxol and have found it pretty doable! Have had cold cap, am half way thru my 12 sessions and still have majority of hair apart from a bit of thinning at crown? The weekly paclitaxol is deemed less toxic than 3 weekly doxitaxol
Glo xx

Nanofthree
Member

Re: Bone mets - please join in

Need a bit of help please. Bone mets for six years. Treatment all hormones plus now on capecitabine. My TMs have been going up slowly over the past four months, from 27 now 55. I am due to have scans next month then a decision on next course of action. Docitaxol was mentioned. I am terrified of this. I had chemo with primaries fourteen years ago and found the whole thing so very traumatic, from the hair loss to the loss of a normal life. Does anyone know, a) if the rise in my TMs is cause for concern, ie can this be caused by anything else and b) can anyone suggest any other treatment I can try and push for. I am oestrogen positive. Any help would be appreciated. Love Ruth x
Stephie23
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edwina64
Member

Re: Bone mets - please join in

Thanks Mariose, you know what it's  like you always think the worst! I have been on denosub since the start..22 months now and up to now have had aches but it is working well for me. Hopefully it is a se xxx

Marirose
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Hi edwina are you on Densumab?  Last year I had sciatica the onc prescribed paracetamol and codeine. So I took them regular and dropped the codeine off I really didn't think paracetamol would work so well but they need to be taken regular. The reason I mention Densumab is because I was reading the se's a few months ago and realised it is a se. I dont know if this will help you but I hope you soon are free of it I know it really is painful best of luck xxx  

edwina64
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 Hi everyone good to here Helen has made her escape and is back home just in time for hot sun, wimbledon and strawberries!  Feet up and enjoy Helen x 

I am on e/e combo since Nov and still not sure if its working for  me as had slight progression  last scan, next scan on tuesday so we will see, but got new back pain and sciatica , painful to drive so wondeting if this is a new bone cancer problem....as you do! Anyway  as for diarrhoea I do get this when I go but only once a day so not too bad. I get very tired though but I hope its working !

Marirose
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Re: Bone mets - please join in

Hi Sarn I spoke to my friend apparently her Liver met has grown the e/e has not caused her diarrhea and she has been taken off both. I do hope your scan goes well tomorrow will keep my fingers crossed for you. I wish I could ask my breast nurse but it seems she works at a different hospital and as I see very little of her or any of the other BCN's I am reluctant to ring them and so I will wait 3 weeks to find my CT results. You take care love Rose xxx

Sarn123
Member

Re: Bone mets - please join in

Thank you marirose I've been on the e/e since sept and the exementane for 18 months and not suffered with this up to now, plus earlier today there was blood and my tummy feels sore and bloated so maybe I've got an infection, ct tomorrow should hopefully shed some light! Have a good evening love sarn xxx
Mermaid007
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So glad you are out of hospital Helen xxx
Marirose
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Hi Sarn sorry to here about the bad diarrhea I have a friend who started on e/e combo and spent quite alot of her first month down with it so they reduced the doze and still it continued. She hasn't been on the everolimus for about 6 weeks and it still continued but this week it seems to be stopping. Exemestane can also cause diarrhea and we wondered if that can be the cause of her trouble she will see the onc today so I hope she will ask her. I have been pretty good in that department and although I have had the odd occasion I still have the same box of tablets they gave me nearly 12 mth ago. Don't get me wrong it is not always normal I do go often and fire bullets rather than normal stools but I have had very odd constipation days but I never take anything for that because I know it will sort itself out. Hate talking about this subject but I hope it helps you out and anyone else in this position. Goodluck Sarn and if I can be of anymore help let me know xxx 

Marirose
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Re: Bone mets - please join in

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
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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
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Hi all fantastic news about Helen glad to hear your on the mend and back home hugs sarn123 xxx
scoobiesue
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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
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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
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That's wonderful news about Helen, yippee . Marie

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