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Bone mets - please join in

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Re: Bone mets - please join in

I have just had a CT scan but no Onc appointment for 3 weeks....can I throw my extra large styrofoam out to Helen? Climb on gently, lovely lady xxxxx
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Just managed to log on forum whilst in France and I am so sorry to hear Helen is poorly again. I do hope and pray that Taxol works for you Helen. Sending big hugs to you & everyone else-I notice we have lots of newbies. Love Helen x x
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Can I attach my styrofoam as well pls???? Ct scan done - results.tomorrow xx
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I'm attaching my styrofoam. Good luck to us all x
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FF you made me smile. I can't swim so you will know which one I am - the one bobbing with the arm bands and the rubber ring.grab me quick and tie me to Belinda's large styrofoam life jacket. Rosie x
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Got a plan, if we rope all the styrofoam together we shall have the equivalent of a large life jacket. Hang on in there all. X
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Oh my! I so hate knowing that so many of us are having difficult scary times. We all do so well when it's smooth sailing and seem to get on with our lives, but when that boat gets rocked and we get thrown overboard, those life jackets seem sparse. I feel like I didn't get one of the life jackets this time. I got a chunk of a styrofoam cooler to stay afloat, I've been trying to paddle and kick my way back to the boat. Maybe my next scan in October will show me the styrofoam cooler was good enough to get me there. Meanwhile I'm waving to those of you in the boat and if you're out here bobbing around with me, kick on over for a hug! Helen, sending you big hugs!!! FF

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Thank you to everyone who replied re the e/e drugs. Marirose I have 4 more cycles of Eribulin and further CT scan before Onc decides next plan. I will let you know if/when I go on this combo.
Good luck to all awaiting results and treatments this week I read the posts everyday and take great inspiration from you all. I realise that it is okay to have a downer, to rant against this evil disease, to be anxious, scared, angry but most of all I appreciate the good days. Well off to see Onc again today to arrange chemo for tomorrow. Bye for now x
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Adding my best wishes for Helen to everyone elses!  Hoping the Taxol works, Helen, and that you are well enough on Wednesday for your next dose.  Hoping it treats you gently!  Hugs (gentle ones), Barton.x.

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Oh dear ladies, I think we all need to hold each other's hands right now, a difficult time for so many of us especially our lovely Helen whose hand I am holding extra gently.
So many friends and families don't understand not only are we dealing with the side effects of the treatments we are constantly on but also the worries and anxieties we have about every little thing, even if in the end it's not related to this blasted disease.
Keep strong, try to live for the day as edwina has said even though that may seem impossible at times.
Hugs and hand holding to all.
Nicky x

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Hi Jam and everyone...still gave a numb lip and chin and waiting for a scan date. Feeling very low at the moment as it could be very serious and not knowing is a bit of a nightmare! Keep prodding my lip and chin every 5 mins to see if it had improved...mad! Tooth still niggiling . See onc next Tues to get cape for the 1st time it feels like I am waiting forever.  I have lots of questions but not sure I want the answers! Anyway  I am sure you all understand ,oh says we should try to live for today as worrying about tomorrow spoils what we have now, its true but so difficult....hope everyone is doing ok good news please ladies that helps alot x

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Love and hugs to Helen. Edwina how's your toothache? Have you had any help or reassurance yet? Good luck everyone else xx
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Thanks Chocolates for the update on Helen. Really hope the taxol helps and that she's being made as comfortable as possible.
All the best to everyone facing results or having a hard time at the moment.

Tournesol x
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Thankyou Chocolates for the information regarding Helen lets hope the Taxol works for her. 

Sending Helen lots and lots of best wishes via cyber vibes HeartHeartHeart

 

C good luck with your results on Wednesday I went through what you are going through last week I was convinced they would change my treatment but every thing was stable so I hope it is good news for you. My skin mets vary from being very red and angry to settleing down to reducing in size wish they would go away but no chance of that I have had them 18 month now apparently yhey don't show on the scans so someone said in another thread. Again good luck xxx

 

Rosie your e/e drugs are everolimus and exemestane I have had 14 courses and still stable but it is hard at the start let us know if you go on this treatment xxx

 

Love to everyone else xxx

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Good evening everyone from a very rainy Lake District - every time we've been up here for a week or more this year it's rained lots so don't book holidays in the north if I'm away!
Thinking of you Helen as always and praying the taxol works x
Good luck to anyone having scans or receiving treatment/results this week
LD x
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Thinking of Helen. XXX
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Thank you Chocolates, keeping everything crossed for our lovely Helen.

Hugs Janette xxxxxxx 

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Hi Stresshead

Thanks for the reply..

I think I go thru periods of coping with this disease and times when it just totally overwhelms me.. Right now I am on a real downer... I noticed a real improvement in my skin mets bet cycles 2-3 but since I have had my 3rd cycle they don't appear to have changed and tbh sometimes I think they may have got worse - doesn't help that my little one accidentally elbowed me in that area and I think I have a bruise (cud be more skin mets, but is more purple than the red of the Mets - I'm hoping at least)..

Have you spoken to your oncologist about your concerns re treatment?? I wud have thought that if not working by now they wud have altered your Chemo? Did you get a second opinion? Sorry your having such a worrying time, it's the not knowing that really gets to you..

I really worry as I'm tnbc as well as being allergic to tax so know my options are really limited..

Let me know how your getting on..
(((((Big hugs))))))

Good luck to everyone else on here that is facing tests/treatment/results
Keeping my fingers x'd for Helen..
C xxxxx
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Ladies,

Helen is still with us but very very poorly still. She needs all our positive thoughts and vibes. If she's up to it then she'll have another taxol on Wednesday. She sends all her love to everyone and thanks you all for your continued support.

If I hear anymore I'll update you as I get news

Hxxx
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Hi Rose_Red

 

I've attached a link to a thread which may be about the two drugs you mentioned:

 

http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/everolimus-and-exemestane/m-p/8...

 

I hope this helps!

 

Best wishes

 

Janet

BCC Moderator

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Thinking of Helen and others having a bad time at the moment.
I had my CT scan last Wednesday following my 6th cycle of Eribulin (day 1 dose only ar 20% reduction) and the Onc confirmed today everything stable - what a relief. He has agreed to a further 4 cycles and then another scan and review. He mentioned the possibility of going on to two drugs both beginning with E in the future. I remember seeing a post on here where somebody mentioned being on e/e and was wondering if they could tell me what the drugs are called. My OH was taking notes but we couldn't work out afterwards what the Onc had said!!! Rosie.
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Just wanted to add, I'm thinking of Helen too, hope taxol works xxx

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Hi easytiger, sorry I've not replied sooner, I haven't logged in for a few days.  I found that immediately after the 5 radiotherapy blasts, I got slightly worse - but I was told to expect it to do that - and then within 2-3 weeks I was noticing an improvement,  this continued over the next few months.  Now, a year later, I get the occasional ache or throb in that area, but it's almost unnoticeable.  The scans I had later on also showed a "healing response" so they tell me.

 

I really hope your Mum finds it just as good.  Those 5 days were long and scarey (I wasn't allowed to move at all at first, I don't know if your Mum had the same experience).  I was very lucky that there were 3 particularly kind and encouraging patients on the same ward, with different cancers, and that helped me alot.

 

Lots of love to your Mum, my children have been a huge support to me through all this, I'm really proud of them, I bet your Mum is too.  If she has any more questions and I can help in any way, let me know.

SHP

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Orse, so know how you feel re: scan. Last time we 'spoke' on here you were really upbeat about your treatment and it was me who was really concerned that mine wasn't working.and still am. Havent noticed any reduction and am sure i have got more spread. I'm sure if you've seen an improvemnt things must be moving in the right direction. Please let us know how you get on, either on here and/or our skin mets thread. Will be with you in spirit. Love and hugs to you and all others struggling through at the moment.x

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I think the nurse practitioner at the onc day unit is going to give me feedback re scan! My TM were 12 on initial diagnosis (secondaries from the start) and have never risen above 60, but my onc had watched them rise with each progression and they dropped after the 5 taxols so he things although they are low the trends mean they can be used! Fingers crossed!
Hoping for good results for everyone!!
Glo xx

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Orse, I've got all my fingers crossed for you - it is so difficult when having scans and results - especially now the kids are at home. Sometimes they are a welcome distraction but at other times they can be very difficult to cope with. Is there someone who could help or take them out for you so you get some time alone to just gather your thoughts?
Glo - I hope your scan goes well - that is a while for results - are you planning anything in between to pass the time?
Aunico - glad you are now out of hospital - sounds a dreadful experience. I hope that this reduced treatment continues to work for you and there are no more infections xxx

Ladies, I haven't heard from Helen for a couple of days. I'm just hoping that the taxol has made her very tired and so she's resting a lot. Fingers crossed everyone xxx

I'm doing some sorting out today at home - a good clean is needed so this will keep me occupied. Hope marie is having a lovely hol.
Good luck to everyone else having scans/results/treatments this week.

Huge hugs,
Hxxx
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Hi Glo,

Thanks for the reply.. And the hugs... Need them right now!!
Sending you hugs for Wednesday... Wot a nitemare tho having to wait until 17/8 for results.... At least I get mine over in one.. Ish anyway!!
Bet you are really plsd with the results from your review.. Hoping you c has and continues to be nuked by the chemo.. My TM are and always have been within normal range, oncologist says just not going to be an indicator for me..
C xxx
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Hi it's the type of infection they said I caught. Pretty bad apparently. I'll chat to them Wednesday as I'm pretty gutted that I only lasted 4 weeks on it!

 

Vicky

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I know how you feel! CT scan for me Wed, after 9 sesions of taxol! Had a review after 5 when my TM had dropped quite a lot (for me) and my liver tests were all better! So onc thinks things are going in right direction! But you never know! Unfortunately my onc is on holiday until 17/8 so don't know when I will get scan results!
Virtually hugs and hand holding coming up!
Glo xxx

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Hi ladies

I've got a crap week coming up.. I have a CT scan tomorrow and and appt with my oncologist on Wednesday..

To say I'm scared doesn't even touch the sides.. This is my first chemo since knowing about all my mets.. And I'm petrified that the chemo isn't working, and that the cancer is spreading.. I've noticed a reduction in my skin mets, but that's not reassuring me at all..
I know it doesn't help but all I'm doing is crying or shouting at my family - I feel so sorry for them!!

I've learnt to cope with the day to day life but when Hosp appts loom I go to pieces..

Any of you lovely ladies have any coping strategies?? I feel like just staying in my bed, but it's the school hols and I have to try to function for them.

Thinking of everyone else who is going thru a tough time at the moment, esp Helen who helped me during my mets diagnoses...

C xxxx


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Have missed quite a few days on the forum and was devasated to hear about our lovely Helen. It seems there are a lot of us struggling at the moment but none more than her. She is an absolute diamond and my thoughts and prayers are with her for a good response to the treatment. Thanks Chocs for the updates.

Best wishes to all.xx

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geordiex THANK YOU for posting this. She's great. I'll be emailing and flagging her up wherever and whenever I can! Had a stress filled few days and I'm over four pages behind on the forum. All sounds worringly awful for most on here and sending everyone best wishes for as much respite from symptoms as possible.
Much desire to curse and swear as no other words seem to cut it. I need Stephen Fry as a moderator when I'm up! x

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HI all - I hope everyone is as well as they can be.

 

Chocolates - I hope they get you sorted soon; toothache is horrible.  I can't offer any advice re dental treatment as before I was allowed Denosumab I had to have 5 teeth out so not enough left to give problems. I had a maxillofacial scan where you stand up and it goes around your head. Have you had this one already?  You have to put your front teeth over a little mouthpiece and for hygiene purposes they put a little rubber sheath over it (like a mini condom)   Smiley Embarassed.

 

I'm sure there is mention of dental issues in one of the old threads; perhaps they might put your mind at ease a little bit.

 

Please could you also send my love and healing thoughts to Helen?   I'm so sorry to hear that she is so poorly. I have everything crossed for her that this chemo works its magic for her

 

Tink x

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Vicky I am on e/e combo what is PCP. I have been on this treatment 12 month now and 4 stables on the CT scan it was very hard to begin with but se get easier as time goes on. There is a thread in the medical and treatment issues and you will find alot of information how other people coped with everolimus and exemestane alot find it difficult because of the se's hope you do ok. Good luck

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Can't help Vicky but wishing you all the best x
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Hi all I'm back after a4 week trip to hospital! I have been on everolimus and exestame and managed to react badly and pick up a PCP infection which they're associating with me being on the everolimus. Anyone else come across this before?

 

Disappointed as had only started the drugs about a month ago but they're keeping me on exestame for now. Also disappointed as I always thought my immune system was fairly robust. 😞

 

Vicky

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Hi Sallyhennypenny, 

 

I'm new to the forum. My amazing mum was diagnosed only a few months ago with breast cancer, with mets to her spine and lung. 

 

Like yourself, she had spinal compression and was given 5 daily radio therapy sessions straight away as a matter of urgency. 

I am so pleased your pain and numbness has gone away - I was wondering, how long roughly after the radiotherapy did it take for you to return almost 100percent back to normal. Thanks x

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Thanks for letting us know about Helen, Chocs. Along with everyone else, I'm willing the taxol to work with the minimum amount of SEs so she can be placed on a trial when necessary x
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Dear Chocolate

 

thank you for the update on Helen. I am so sorry to hear the news. Please let her know my thoughts are with her and I am willing she can cope with the Taxol and be able to go on a trial

 

 

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Edwina hope everything ok just wonder if he's one of these people that try to frighten us and put thoughts in our heads(as if we don't have enough of our own). My dentist said it was quite rare when I discussed it with him and someone I know slightly has just been though it all. So fingers crossed for you xJanetx
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Just to let you ladies know for future reference my raised calcium level made me ache and hurt everywhere a different place each day and was getting worse no pain relief seemed to work . Lucky for me I had a blood test for my infusion because it is quite dangerous if left. Was given fluids yesterday and responded well, have had more today and they've let me come home as long as I drink and drink and drink. The aches and pains have decreased significantly. And I now realise it was my own fault for not drinking enough especially when it's warm. So if you're told you should drink plenty please do. I will have another blood test on Thursday and hopefully will be able to have my zometa infusion xJanetx
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Oh Edwina, that sounds very scary. I think it might be a good idea to hold on to the fact that he is not sure at the moment. There still could be another explanation. A scan may well confirm that this is nothing worse than a severe infection which has affected the nerves. I know it's silly to say but try not to worry too much. I've got my fingers crossed for some positive news xxxx
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Hi everyone, sorry to hear Helen is still suffering praying the chemo will work for her xx

I went to the hosp today to see the facial team re my toothach. The xray didn't  show much so he said the fact that my lip and chin have gone numb could indicate cancet spread as 70% of people with this are from breastcancer mets. Hd said he would take my wisdom tooth out but because of denosemub it might take time to heal, but then said if it is cancer it might not  heal at all! I wonder if anyone has had this or any dental treatment. I feel so worried have to have a scan of my head...sounds so serious , what next.

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So sorry to hear that Helen is unwell, my thoughts are with her. Hope the new chemo helps and that she begins to feel a little better.
She has given me so much support always, but particularly about 18 months ago when I really needed a virtual friend. Like we often say it is easier to speak to others on this forum than close relatives.
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Oh, Chocolates, thank you for the update on Helen. So sorry she is suffering at the moment - please give her all my best wishes for the taxol to work, with few or mild se's (preferably none!). Thinking of her. Hugs to Helen, and you, too. Barton.x

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Thanks Chocolates for the update on Helen I don't know what we would do without you keeping us in touch with Helen's condition. We really are sending vibes for her to get a little better she has been such a strong voice on this web site and we all love her xxx

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I'm sorry to hear that Helen is so poorly. She is such a fighter giving it her all! Janet best of luck with your calcium issue. Never heard if it before this. Sarn, WOW that sounded scary and a bug mess. Take care and feel better soon. My oncologist wanted to biopsy my lung again to recheck how hormone positive I was before I started letrozole because it's been almost 10 years since my cancer was biopsies. I told him NO! I already have a partial collapse of my right lung and in 2012 the rest of the lung collapsed. It did manage to reinflate on its own in a few months. I'm not taking any chances. I told him every time he gives me a new chemo it's a luck of the draw if it works or not, so I'm going to go with the same luck if this hormonal treatment works or not. My original breast cancer in 1995 was ER + and 10 years later eith nets it was the exact same, so I'm going with 10 more years probably hasn't changed. FF

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My love and prayers to Helen too, Chocs, and good luck to everyone with results and treatments, big hugs to us all xxx
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Thanks Nicky and Chocs am just waiting to be seen by Drs now so should soon have the drip up and running. Chocs please send my love and best wishes to Helen. Hope everyone else coping ok today xJanetx
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Hi Chocs, thank you for the update on Helen. She has such a fighting spirit, still, after all she has been through, thinking of you Helen, with love. X
And thank you too Chocs, you have been such a support for Helen, a friend indeed. X