Bone mets - please join in

[Chocolates]

Hi Emerald, welcome to the thread.  So sorry you've had to join us but you will find a fantastic group of ladies who are ready and willing to offer you support and advice.  Don't be afraid to ask anything, or rant, scream, cry  etc.  it's all permitted.  You've been on a roller coaster haven't you?  I really hope that when you go back next month you will see improvements and your treatment is working.  In the meantime look after yourself.

FF and Stresshead - so sorry you are having a difficult time.  I'm sending you both huge hugs.  Some days are just so difficult but hopefully things will pick up for you both soon.  xx

hello to everyone else.  Absolutely miserable weather here, so caught up on a few TV programs under the duvet today.  Back to work tomorrow so hey ho.

huge hugs xx

hxx

[stresshead]

FF..many thanks for the info on ibrance. I had letrozole which ddnt work at all so thats maybe another brck wall. 'll certanly go on the webste yo suggested. x

[Lynnq]

Morning Ladies, especially the new ladies - you are struggling in a similar way to the way I was on diagnosis.
Emerald I was put on Letrozole almost three years ago and it has kept me stable with no progression and some resolution ever since. They can't see my bone mets any more.

BJH - i had a R mastectomy and lymph nodes removed but they discovered at the time of the op that I also had cancer in my other breast. Lots of tiny tumours too small to show up on the MRI. They then did CT scan which showed spread to bones and peritoneal area
When I asked them for a mastectomy on the other side as well the surgeon said that since the cancer had spread it would be a futile operation. Like you I didn't understand why so he explained that when we have primary cancer the chief concern is to get rid of it, either by surgery or chemo in order to stop it from spreading.
Once it has spread their main concern is to stop it from spreading elsewhere - or to contain it so a mastectomy is not considered necessary.  The treatment for the secondaries will also stop the primary from progressing any further.  

The surgeon gave me a life expectancy which I have outlived, my Onc doesn't agree with 'statistics' and told me to disregard it.  

[BJH]

Something I can't really understand is....  Originally a mastectomy was planned for me and also a few others on here I gather.  They say that now a mastectomy is no longer required as it has metastesised.  Can anyone shed any light on this ?

[springsummer]

Morning Emerald. I had the  same thoughts when I was put on Tamixifen - a tiny little pill !! but it made me NED for 3 and half years. Trust them they work!! kind regards SS

[Emerald1959]

Just joining this group

I found a very v small lump and a skin crease that was new in early July GP could not find it was asked for recall which I went along with, still nothing! she did not want to refer me under the cancer 2 week wait rule but I was lucky as I have insurance via work so went with that.

First visit yes it was there, biopsied, Mammagram (not seen on that) ultrasound yes confirmed.

2nd visit yes stage 3 aggressive plan surgery, chemo, and radio need MRI

3rd visit MRI showed ivasion of chest wall and ? sternal mets no surgery now to have chemo to shrink it then surgery CT scan requested

4th visit (last week) this time with oncologist, surgery told  now probably never, bone mets with possible liver mets, chemo no not at the monent, so treating with letrozole and bone strengthening treatments.

And yes I would like it removed! but my understanding it never will be right breast now looking/ feeling more wonky than it was, the lump is bigger and is now easy to feel

I also am feeling iching in area over the tumour plus twinges in the area plus twinges in multiple boney bits but was told that a side affect of letrozole could give you joint pain so not sure which is which! I must say I look at the single little pill and think is that it!!!! I want bigger gunned treatment!!! but am running with it and see what the return to the oncologist brings at end of October

Should be having a bone scan prior to that

Wishing everybody well xx

[springsummer]

yes, i thought it was 6 months. Thanks fpr the 3 years I'l take that. you are really going through it too FF. This si so sh*t. Big Big cybr hugs to you.xxxx 

[funnyface]

Springsummer, I was just googling lymphangatic spread and the one site said prognosis used to be 6 months but now is usually 3 or more years. I'm going for MORE!! FF

[funnyface]

Springsummer, I'm scared too. I'm tired of all of this! Then I added in the bum knee and now some dental issues. My knee just quit hurting. It seems the gel injections have started to work. Now I'm scheduled to have 2 molars pulled. It's not in my budget to fix them or do implants. It has me very upset to lose them. You

can't see them when I smile, but feel like here goes more of me crumbling away. It has pushed me over the edge and feeling very low. Hang in there! FF

[springsummer]

Hi FF

I've just back from hosital after a drain to my plureal effusion but am still breathless. the doc told me they saw something on the scan that looks like lymph spread in the lungs and that could be the reason i am still breathless. the only thing they can do is wait and see if the drugs start working. havent worked yet but this is my first cycle and they keep tellimg me its too early. feeling very down down and feel i will never enjoy another day not feeling ill. feeling sorry for myself and not strong but i know the prognosis is not good.  thinking about asking my brother who lives in spain to come and look after me! my mind is racing ahead SS

[Ladywolf]

Hi bjh

I'm so sorry you've had to join us..

I think I'm in a very similar position to you.. I'm 45, husband and I split up about 5 years ago, two boys ages 10 and 9. I have little support tho, one good friend who is always there but no blood family left😞

I have skin Mets and spread to lymph nodes in chest and under my good arm..

The first piece of advice I would give is NOT to ask about life expectancy.. Was the worst thing I did... The oncologists just don't know, medications have changed so much in the last few years that they have no way of knowing the stats just aren't there.. (And even so they are just statistics).. They also have no way of knowing how each individual person will react to chemo and other medication..

There are ladies on this forum who have lived for many years with mets..

My hb levels always drop when I have chemo, and I have had loads of transfusions.. I now eat loads of iron rich foods, and always with vitamin c (helps the body absorb the iron) - latest advice I got from chemo nurse was to have a drink of orange juice followed by a cup of oxo - sounds silly I know, but it has kept my hb up for the last few cycles with no need for transfusions.. (Can't say it is definitely this that helps but working for me)..

Keep posting on this thread.. The ladies here are lovely and have helped me thru some very dark times... They are full of advice and are the only ones who understand what it feels like to be in this place..
Sending you a big cyber hug (give your girls load of cuddles too)..

Take care
Wolfie xx

[Red]

Hi BJH. Sorry you've had to join this club. I was diagnosed in 2005 with my primary bc. Recurrence in neck node in 2008 and been fine since then till a few weeks ago when I was diagnosed with it in my shoulder bone. The ladies on this thread have been very supportive and helpful with advice for me. While researching the Internet, as you do, I came across the Metastatic Breast Cancer Network (MBCN) where I read about lots of ladies who have been living with mets for 10 years and more. I took comfort in this as I too have children who are my main concern. Hope this helps. Red x

[BJH]

Hi, it's my first time on this thread
I was diagnosed with breast cancer in April. I had a mammoplasty then pathology showed that it had spread to the lymph-node and the tumour was twice the size as originally thought along with other tumours which were taken out. I have DCIS left in the breast and a mastectomy was planned followed by chemo and radio. however after a routine CT and bone scan followed by sternum biopsies it was diagnosed that I had secondary breast cancer in the whole sternum. Removing the sternum was discussed as an option but not now, they are going to pursue chemotherapy followed by radiotherapy then Tamoxifen and bone strengthening drugs. 

I had my first chemo (FEC from FEC-T) on Monday.  Only minor side effects so far but was taken into hospital to be checked as I had a reaction to the injections (shortness of breath) I had to give myself to boost white blood cells.  I have been advised to stop taking these now.  Only took 2.

They found out through blood tests that I am Vitamin D deficient (now on supplements) and my HB levels have dropped but not enough to warrant a transfusion.

I am 46, My husband left me almost 2 years ago and I have two girls aged 8 and 12.  I have a fabulous support network though.
Any advice that anyone can give would be much much appreciated to help me deal with what's going on at the moment and more info on life expectancy xx

[funnyface]

Stresshead, Yes, I'm on ibrance. I will finish my 2nd cycle if this next week. I will have a scan in Oct. My problem is what they call ground glass opacity in my lungs now. I have had it for 18 months. They aren't sure what us exactly causing it. It can be caused by lymphatic spread which is what they are watching.Lymphatic spread has a very bad prognisis. The I branched is given at first in 125 mg once a day for 21 days. It is quite pricey. It is about $10,000 dollars. It is given with letrozole. They say letrozole works for about 10 months alone and with ibrance added about 20 months. You are supposed to be post menopausal, ER+, and HER2-. I haven't had any SE's from it. Many complain if extreme tiredness. Many have low white blood counts and platelets and have had to have their dose reduced. I have only had my levels checked on the first cycle. I will have them checked this week for the 2nd cycle. I don't have any information on when it will be available in UK. I believe it is made by the drug company called Pfizer here in US. You could go on a site called bcmets.org and ask a lady named Musa what she knows. She seems to have a lot of info on different topics. Hugs! FF

[edwina64]

Hi stresshead sorry i dont know much about skin mets but you sound so worried and I know what thats like!  can you ring your breast nurse or macmillion and tell how worried you are and they may be able to set your mind at rest a bit about treatments or your brest nurse can ask your onc to explain. The very positive thing is no organs effected thats great! Its the not knowing that does you in, best wishes xxxx

[Jam]

Thanks Wolfie will ring them on Monday x

[Ladywolf]

Jam - our local Macmillan will lend wheelchairs out for free.. Worth a phone call? I took one when I went on holiday just incase the fatique got the better of me whilst travelling..

Wolfie xx

[Jam]

Thank you Belinda. Sorry to hear your news Stress head sending hugs xx have a great time Edwina x

[stresshead]

Hello to all you lovely ladies, i hope none of you are suffering too much at the moment. Just a brief update (full story under cutaneous mets thread on treatments board).

Saw my onc on Thursady (for the first time in 10 weeks!!) who told me my scan pictures looked like my organs were still clear..for the moment...although the written report wasnt back. this piece of good news was then overshadowed when he examnied my skin mets. I have had 6 cycles of erubilin and i knew after 3 it wasnt working. He was shocked at how quickly the mets had spread and his whole demeanour changed.  I had been expecting to go onto the e/e combo as chemos just aren't working but then he told me that my biopsies inapril had sheon some of the mets to be triple negative. I have (and as far as i know my GP) always been told i am er+, her2-. No one thought i should be made aware of this!! it hasnt affected my treatment with chemo's up till now but it has significantly reduced my options with hormonal and biological treatments still left to try.

I have now been put onto weekly taxol (no mention of gem carb) but i could tell no one is expecting this to work either. As you can imagine this has knocked us all sideways...one day we think there are several options, the next we're given the impression that there's  very little hope. My daughter even wants me to move to America so i can get Ibrance!! ( funnyface, am i right in thinking you are on this?...maybe you have more updated info on when it is likely to be licenced here??)

I have never eally done any research into treatments for triple neg so thought you may be able to help..any info/advice would be most welcome. cant uite see how i can have to lots of stuff at same time though, one to try and kill the er+ and one for the er-???

At desperation point again...wouldnt we all just love a break? Can't think of more deserving people.

Thank you for listening. Love and higs to all. x

[belinda]

Janet have a look at Argos and others as well as mobility suppliers. I have heart failure due to chemo damage and know my limits walking wise. If you are intending a chair for streets, pavements you'll need something more substantial, wheel wise, than a lightweight for shopping malls, occasional use. Have a good time. X

[Jam]

Morning Everyone. Hope things are not too bad for you all. Haven't been on site for a little while so need to catch up. I'm slowly feeling better had zometa and then blood transfusion this week am starting to feel a little better. Now having zomorph as well, at the moment have another groin strain so struggling to walk, on ibuprofen for that.  We are going to our son's near London next week and have been told I can go and should go so starting to get excited now. What I wanted to ask is haven't need a wheelchair up to now but could do with a travel one for next week. Can anyone recommend a good one for comfort and lightness. Don't mind if it's to hire or buy. xJanetx

[edwina64]

Hi everyone hope ypu are all doing ok x well its my daughter's 40th birthday soon so took the bull by the horns and booked a family holiday to a villa in Menorca. It's in 3 weeks time so hopeful the cancer gods will let me go ! Shocked when tried to get insurance 7 days in Europe one quote 2300 pounds! Went with insurewith , it was 54 pounds so recommend them to everyone.  First cycle of cape on second week now not bad will the side effects build up for 2nd cycle? Still have pain from my wisdom tooth extraction but hoping this will receed by holiday....we don't ask for much do we xx

[funnyface]

Red, My vinorelbine was infusion, I didn't have any "loo" issues.I wonder if I was just lucky or if oral vinorelbine might cause these tummy problems. My insurance at the time wouldn't pay for oral chemo.

[Chocolates]

Evening ladies, I'm sorry I've been absent for so long.  I've read the thread through- gosh there was so much to catch up with and of course a big welcome to all the newbie's.  I'm going to ease my way back in again.  In the meantime huge hugs to all you lovely ladies.  What a wonderful community we are.

lots of love,

h xxxx

[Red]

Hi All,

Last night I took my first dose of Vinorelbine and I have to say I am quite surprised that I am feeling ok. I was on the loo for half the night with raging diarrhoea and I did feel a little nauseous but ondanzetron sorted that out. I felt washed out and tired this morning but by the afternoon I felt much better. Nothing compared to FEC and Taxotere. I just hope it does the job.

Red x

[edwina64]

Thamks ftr the info and link belinda, might just book holiday and hope for the best x

[belinda]

Hi Edwina, this will take you to the Capecitabine thread,
http://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Xeloda-Capecitabine-Your-Top-T...
My side effects took 3 plus cycles to kick in but recommend moisturising feet and hands from the start of chemo. Never had a sore mouth with this chemo. Tablets are slower to show they're working than IV so think it took 2 or 3 cycles to show my chemo was working. My tips, always leave at least ten hours between the two lots of daily tablets and always take with at least good sized snack, a bowl of cereal if you have no appetite. Good Luck. X

[edwina64]

Hi everyone...not sure how to get to the treatment page but wanted to ask..l have just started cape 1 week now . I wondered if any one knows how long before a. Thde side effects kick in(not  had sore hands and feet yet or sore mouth) and b. When shoukd it start working ad still have pain from lymph node under my arm think its pumping cancer around my body! My daughter is 40 in oct and we are supposed to be booking a family holiday to celebrate but worried i will end up not being able to go. its only a few werks away but worried i will spoil it for everyone. 

[funnyface]

Red, No herceptin. I'm HER2 -.

[Red]

Thanks for this post funnyface. I'm about to start Vinorelbine so this helps to ease my mind a bit. Were you on Herceptin aswell? Red 

[Downbutnotout]

Hi Stresshead - Gem Carbo worked well for me and I found it the easiest chemo I've had; I felt really well on it. Although I had a reduced dose after the first cycle, plus lots of delays and missed half the day 8 Gem, I was NED for about 3-4 months. The one thing I would say if you're going to have it is to ask your onc to give you the blood cell boosting injections from the first cycle because it really hammers your bloods and that's why I ended up with delays and cancellations. If I'd had Neulasta after the first day 8 I might have kept on track, which may have then stopped progression for longer.

Best of luck.

X

[funnyface]

Stresshead, Have you had vinorelbine (navelbine) worked well for me for my lung mets. I got 5 years out of it. It was very tolerable. FF

[springsummer]

Hi stresshead.  I have heard that carbo is a really effective one. I am not sure if it is working or not have only been on it for 9 days so maybe i am a little too impatient. They did say though that because i have been on a parp inhibitor trial it may not work for me as the parps and carbo work in a similar way. If you haven't been on parp trial then try and not worry too much. I am sure it will work.  Are you a braca carrier? They work particualry well for braca carriers SS

[stresshead]

Hi ladies....

Just read the posts about gem/carbo.....

Wolfie/SS, i'm so sad to hear that you think it has stoped working for you. As you know i've had Docetaxol/capecitabine and Eribulin fail on me very quickly and gem/carb was one of the other few options for me...now i'm very scared!! My mets are spreading....now under my arm and up round my shoulder blade. Have also got a patch of rough thick skin on my other 'breast' so i'm expecting to see lumps there soon. I just wish we could all have a respite from this **** disease. When i was diagnosed i was told it was incurable but controllable...seems mine has other ideas!! I'm very aware that that the quicker these treatments fail the shorter my survival will be and that breaks my heart..not for me but for my daughter.:i know you all understand that feeling. Here's hoping something will work for all of us soon. x

[Ladywolf]

SS - yes I'm orse... Had loads of probs when they changed the site to single sign on..

Became Wolfie now after my favourite team.. And of course the fighting spirit you need to cope with this disease!!
Wolfie xxx

[springsummer]

thanks jam x

[Jam]

Thanks Wolfie will start it tomorrow. Good luck to you and Springsummer xJanetx 

[springsummer]

thanks ladywolf. I'll be more patient......  i had a look at the gem/carvo thread thanks are you Orse?

[Ladywolf]

SS - I've bumped up the thread for gem/carbo - it's on the treatments and medical issues section..

[Ladywolf]

Hi SS

The gem part is gemcitabine (sp?).. Carbo and gem are sometimes given together.. My onc originally was going to just give me the carbo - which they think is the best part - but I persuaded her to give me the gem as well.. I have carb and gem infusion on day 1 and just a gem infusion on day 8.. It's a 21 day cycle..
Tbh when I first started my se and mets actually flared up, went really red and loads of little pin pricks.. They continue to flare up thoughtout the cycle.. I didn't actually notice any real reduction until cycle 2, when it became really obvious.... But with my skin mets it's obvious to see and I took photos - not sure where your mets are? There is a thread on here about the gem/carb chemo.. I'll see if I can bump it up for up for you..

Carbo is supposed to be one of the better platinum chemos.. Hang in there and hopefully you will notice an improvement soon.. It's so hard all this waiting, but I think you have to wait for the cancer cell to divide before the chemo can kill the little bu**ers... (That's wot my onc says anyway - cud be wrong!)
Here's hoping yours will be killed very soon!!

Wolfie xx

[springsummer]

i agree about the hair. This disease is bad enough but if you also look sh@t it just makes you feel even worse. Good luck with the wig what is the gem bit in gem/carbo. I'm only on carboplatin. Only been on it 9 days but it doesn't seem to be working. My se are not getting any better. Do you know if it should start to work and make a difference straight away? Or should i be more patient? SS

[Ladywolf]

Hi..

Janet - I have a drink of fresh orange juice then drink my cup of oxo.. Think any brand will do... The nurse explained it as the OJ helps the body absorb iron and the oxo is full of iron.., if you don't give the body the means to absorb the iron it just goes straight thru.. I always hover around the 100 hb mark now which the Hosp are happy with.. Haven't had to have a transfusion for last few times so works for me..

SS - thanks for the advice re wig.. I will google to see if we have one near me,, I'm dreading losing my hair.. Tho I don't know yet when but it will come at some point.. It was the bit which upset me the most last time..
I'm on gem/carbo, just had my 5th cycle.. It seemed to work really well until my third cycle, ct scan showed reduction in skin mets, and lymph nodes.. But since my 3rd cycle I've noticed my skin mets have been growing again, hence the question of re wigs as I'm sure my onc is going to change treatments next time.,, There are many ladies on here that have had really good responses to carboplatin..
Haven't been on any trials yet, tho I have been to christies to make sure my name is on the list.. I'm TN so not than many options.,

Had my chemo thru my port today, and even tho painful was better than the 2 hr hunt the vein.. Onwards and upwards😃😃

Take care everyone
Wolfie xxx

[Jam]

The wig bit was for Springsummer too xxJanetxx 

[Jam]

Thank you Wolfie what a strange combination but I will try it. Does it have to be oxo or can it be a different make and is the orange juice fresh juice. Have you checked any recommended hairdressers in your area for your wig. I asked a few normal hairdressers what they thought as there are 2 in my area and 1 came back as excellent has she had experienced the loss of her own hair. My wig was synthetic but you couldn't tell the difference as she cut it just the same to fit the shape of my face and they are easier to look after. Good luck with the chemo xJanetx

[springsummer]

HI LADY WOLF

To be honest I don't know how much better they are. I bought one yesterday but human wigs come pre cut so you have to go to the hairdresser and get it cut. I'm going next week to get it cut so will have a better idea of how it will look. It cerainly looks more natural and less like a 'wig' with a good realistic parting etc. I treid on synthetic and natural and although the human one was pre cut it did look better. As for retailers, I was recommended a   retailer called Trendco. They have various sites throughout the UK but are in Westbourne Grove in London. They were very, very good and I can recommend them. Trevor Sorbie uses them. Before I went to them I went to another, very famous, department store in London and that was awful. They put me in a dark cupbaord to try out a few wigs and only had 1 human hair wig and that was not in my colour. I walked out. I paid around £800 for the human hair wig and the synthetic ones cost around £200-300.

Did the carboplatin work for you? Which treatment are you going on next and have you tried any trials?SS

[Ladywolf]

Hi mermaid

Thanks, my best friend is currently on holiday so I had no one.. Ended up having to give my ex husband (I've lost all my blood family) not the best solution.. I just get so frustrated when there is no flexibility in forms!!

I'm feeling better today so much less pain in my portacath so hopefully chemo..

Jam - I hope the transfusion works wonders for you.. If it helps I had loads of probs with my hb but was given a tip my chemo nurse to drink a cup of oxo cube with some orange juice once a day.. It brought my hb up and I haven't had to have a transfusion for ages.. Hope you have a lovely time playing with your grandson.. Love it when they are tiny..

SS - I haven't lost my hair with carbo but I am sure I will with my nxt treatment.. Can I just ask if the human hair wigs are worth the extra money? Is it still obvious they are wigs? And do you know any retailer?

Hope everyone is keeping well, best wishes to everyone..

Wolfie xx

[Mermaid007]

Hi Wolfie,
You can put a close friend down as next of kin. I did and it wasn't a problem.
Xxx

[Ladywolf]

Hi ladies

Portacath fitted... Omg it HURTS!!! consultant came to see me.. Apparently I was s complicated case and it took him ages to get it in.. Some wrong with my veins being too elastic - I think he said but I was still groggy from GA... Typical of my body, if its gonna make it hard for me it will😞

Home now and chemo tomorrow if I can stand the pain...

I hope everyone else is ok, all good results and miminal se's.... Right need some more co-codamol now....

Night
Wolfie xx

[Jam]

Hi All been for Zometa today but calcium was up again so had to have fluids first then zometa then more fluids but at least I haven't had to stay in. Fingers crossed I won't. No one seems to be able to give me an answer has to why it keeps going back up and how long this may go on for. I'm imagining all sorts of things at mo. They also said my hemaglobin was low today so am having a transfusion on Monday hopefully that will give me a bit of energy back. Am supposed to be going to London on the 20th for a week to spend time with our grandson again. This weekend with him was lovely he's 11 weeks now. Fingers and toes crossed. Hugs to anyone else struggling this week and look after yourselves everyone  xJanetx

[nicky08]

Hi C (lady wolf) hope the portacath fitting went well. I had mine done about a year ago before I started docetaxel and it's now used for my 3 weekly Herceptin and Pertuzamab infusions. Soooooo much easier than hunt the vein and a lot quicker in the chemo ward as the nurses get me 'plugged' in pretty much straight away, unlike the long time it used to take to get a vein to show itself! I think you will probably be a bit bruised afterwards but nothing painful. Mine was done under local anaesthetic and a bit of mild sedation and is placed to the middle of my chest on the right hand side as the tube goes into the vein on that side. It's a bit annoying as it's visible in some clothes and I have to be careful that I don't wear anything too low cut however that's a small price to pay for what it's actually there for. I just wish is was a bit more off-central as my seat belt can sometimes press on it especially when I lean out of the window to grab a parking tickets out of the machine.

good luck with this and your treatment in general. 

Hope eveyone is doing OK and not fed up with the miserable weather, not much of a summer in the end was it?

Nicky x