Bone mets - please join in

[Orse1970]

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

[Chocolates]

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

[Janet_BCC]

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

[Rose_Red]

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.

[sallyhennypenny]

Just wanted to add, I'm thinking of Helen too, hope taxol works xxx

[sallyhennypenny]

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

[stresshead]

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

[Glo]

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

[Chocolates]

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

[Orse1970]

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

[aunico]

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

[Glo]

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

[Orse1970]

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

[stresshead]

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

[Pleasant1]

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

[Tinkerbelle]

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)   .

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

[Marirose]

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

[Jam]

Can't help Vicky but wishing you all the best x

[aunico]

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

[easy_tiger]

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

[LemonDrizzle]

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

[springsummer]

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

[Jam]

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

[Jam]

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

[Chocolates]

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

[edwina64]

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.

[Lynnq]

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.

[Barton]

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

[Marirose]

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

[funnyface]

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

[Stillhere]

My love and prayers to Helen too, Chocs, and good luck to everyone with results and treatments, big hugs to us all xxx

[Jam]

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

[belinda]

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

[nicky08]

Hi, thanks again chocs, for the update about Helen. It is so worrying to hear how she is so frail but I hope taxol will work for her and she can get her strength back up enough for a trial or that it works for her and she doesn't need a trial just yet. Always thinking of her, and missing her sparkly words and presence.
Janet/Jam, there was another lady on here a good few months back that had problems with rising calcium levels and needed to be in hospital to get them back down again. She was also on zometa but the one change that helped her, after lots of IV fluids etc hadn't, was to go on to Denosumab - this bone strengthening treatment works by removing calcium from the blood to give to the bones - or that's how my onc described it to me. Most if us have to be on calcium supplements whilst on it so our calcium levels don't get depleted. Worth mentioning to your team?
Hope everyone else is coping with life whilst dealing with the rubbish that this disease throws at us.
Nicky x

[rosie53]

Oh chocolates thank you so much for keeping us updated on our wonderful Helen, it's just not fair she has been through so much and she is such an inspiration to everyone on here. I know she will fight this bugger because she is so strong and positive. Please give her my love and best wishes and tell her that all her cyber buddies are holding her hand.

Hugs Janette xxxxxxx 

[Chocolates]

Jane, hope things are ok this morning at the hospital and calcium levels get back to normal so you can have your treatment. Sam, that was such a dreadful experience - glad you're home. Hope at some point you will be asking the hospital some questions about how this ended up going so wrong. Rest up now.

Helen has asked me to update you all - as you know these last few weeks have been very difficult. She's not been eating, has lost a lot of weight and has been told that the cancer has spread rapidly. last week she was told no more options, but after a meeting yesterday she has had taxol, in Helens words she has nothing to lose. She's very frail but I am willing this to work and buy her some time so she can get on a trial. The trouble is they are not sure if she is strong enough to cope with the chemo so the next few days are vital. She sends all her love to everyone and thanks you all for the support. She says she can feel your love and strength. As I know more I'll keep you updated.
If anyone else knows other threads where Helen was active could they let those people know as well - I only tend to be on this thread yet I know she was active across the site. It's a scary time but Helen is so brave to go for the chemo, please god it works.

Huge hugs everyone
Hxxx

[Mermaid007]

Hi Janette, following my primary I had 5 years tamoxifen and then 5 years Letrazole if anything the Lertazole was easier. You should be ok with it and when it works it often works for a long period of time.. Best wishes x

[Jam]

Hi we do seem to be a bit in the wars at the mo. Best wishes to everyone. My problem seem slight compared to yours but haven't been feeling 'right' for a few weeks and went for my zometa this morning and couldn't have it because my calcium is a bit high. Had 1litre of fluid and its started to come down a little. They said if a bed was available tonight they'd ring for me to go in. If not I've to go in the morning. Has anyone else had this problem and if so is there anything I should be doing. Bit worried Letrozole maybe not be working as well as was or could be I've just not been drinking enough. Any help much appreciated xJanetx

[Rose_Red]

Thank you Jo. I will look at the sites you have recommended. Rose

[Jo_BCC]

Hi Red Rose

Sorry to hear you're feeling rather nervous.  I am putting for you below the link to our Someone Like Me service which you might find helpful

https://www.breastcancercare.org.uk/information-support/support-you/someone-talk/someone-me

I hope this might help too:

https://www.breastcancercare.org.uk/information-support/support-you/local-support/living-secondary-b...

Take care,

Jo, Moderator

[Sarn123]

Hi all thanks for all your kind words it really helps
Good luck to everyone having difficulties at mo lots of love to you all sarn xxx

[rosie53]

Thanks ladies for all your advice/info and good wishes.

Sam, what a terrible time you have had, bet your just glad to be home now.

Hugs Janette xxxxxxx 

[Marirose]

Hi Janette I was told by my previous onc that markers were inconclusive they only relied on ct for results so we don't have markers done. But brilliant news about your ct scan thats worth a drink hope your bloods will be ok  love xx

Hi Sarn sorry to hear about your ordeal it sounds horrific glad you are back in your own home and I wish you all the best with your new treatment love xx

Best of luck to everyone else xx

[Rose_Red]

Is there anyone out there who is ER+,PR+, HER2 - and has secondaries to spine and liver? I was diagnosed in 2011, have just been told I have had my last cycle of Eribulin (my fourth type of chemo) and am awaiting CT results. My previous results showed bone mets stable but liver results were inconclusive. Feeling very nervous. Rose

[belinda]

Oh Sarn, thank goodness you're home now, what a stressful time you've just had. 😞 There's an Eribulin thread on the treatments and medical issues forum, started, I think, by Helen. Hope it works well for you. X
Hi Janette, I had much longer on other hormonals after Tamoxifen had stopped working for me, try not to stress about your markers too much. X

[Elily]

Hi Janette

I've just changed to Exemestane (hormone therapy) from Capecitabine (oral chemo) as tumour markers were rising but nothing shows up on a scan. I shall see my Oncologist again next Friday to see how things are going. This is the third hormone treatment I've tried and I've found them far more debilitating than oral chemo. I was feeling pretty well (and I work full time) before the change, but my bones/joints started aching with a vengeance after Day 4 of the Exemestane.   I'll post if or when I know any more.

[nicky08]

Hi Sam, that sounds just awful and, as you say, none the wiser about your receptor status. I know an internal bleed is the main risk with the procedure but I'd not heard about anyone having one or their doctor missing their tumour, your poor thing. I hope you are able to build up your strength before starting on your new regime and you must be so happy to be out of hospital and back home. Keep in touch with us all, those on the same treatment as you and also any of us with liver mets.
Janette, that sounds like good news to me! The scan would definitely have shown any further progress so do take that as a great positive. I know what you mean though when you want totally good news but there's something there that niggles, I've had that many times before! I don't have TMs measured myself so can't help regarding any rises and what might cause this to happen, hopefully someone will be along to help.
Enjoy the weekend everyone.
Nicky x

[Marie123]

Hi Janette, sounds like good results, so enjoy. I have changed from tamoxifen to Letrozole. I didn't have any real se from Tamoxifen , but actually feel better on Letrozole. Hugs Marie xxx

[rosie53]

Hi ladies, well just got back from seeing my onc for results, my scan is still showing stable but TMs are still rising, she said she was not overly worried as scan is fine and all other bloods fine and it might be that she just needs to change my tamoxifen for letrazole. Got to have them re-done in 3 wks and she will decide on then depending on results. I'm not majorly stressed about it but wish they weren't rising. Any info/advice from you lovely ladies would be much appreciated.

Hugs Janette xxxxxxx 

[Sarn123]

Hi to everyone, sorry to read Helen is so un well again x
I've not been on for a while as had a few problems myself, went in to hospital 2 weeks ago for liver biopsy meant to be in 4 hours, two weeks later just returned home from hospital !!! The guy doing biopsys actually told me how fantastic he was at this procedure before we began completely missed the tumour he was going for and cut into my liver!!!! Panic stations internal bleed, it was awful!!! Plus then told nothing taken to test so no further forward, if he was the best man I would hate to of met the worst!!!!!
Ct scan and markers up so in a bit of a state at mo all treatment been stopped because of f*** up biopsy I got shingles back and really nasty infection. The good news is I'm home now and feeling human again I've just got my date through for the 5 August to start ebrilin and going to have cold cap as lost hair twice already and don't really want to go down that road again. Just want to get this all back under control as looking forward to getting back on hormones by Xmas, that's the plan👍. Sorry to rant on but felt I needed to talk. I am gutted that I ll now never know whether my status has changed but I gave it my best shot! Any tips on ebrilin would be good... Love to all sarn xxxxx