Bone mets - please join in

[Pleasant1]

I haven't posted since before my official confirmation of secondary. It's even more awful than I anticipated: two tumours (10th rib and top of left buttock) bone mets in a few places and a shaddow on my liver. I've been in the pit of dispair for over a month – can't seem to drag myself out of it. Suffering a lot of left-side neck pain too which is bothering my head.

I'm now taking three x 500mg Naproxen, four doses of Paracetamol, sometimes Oromorph and sometimes Diazapan. I've had one Zoladex injection, two weeks ago, to help make me post menopausal. After the next injections I'll begin Letrozole (Femera) instead of Tamoxifen. I'm also having a monthly Dynosab injection for bone mets. I've a radiotherapy meeting next week with a view to treating tumours. I'm told it takes a while for the injections to begin helping with pain but how many months is this likely to be?

I'm considering taking anti-depressants as I just feel so doomed. Sorry but it's currently unbearable, mostly when I stare at my family and grieve for the early loss of everything we've worked for. I've forgotten how to laugh about anything and I look at everything as if it's pointless, have low energy and when I try to do anything I'm mostly in pain - like gardeing or any chores. I feel totally useless on every level.

I'm miserable to be around and everyone's finding it all really difficult to cope with. I'm not Catholic but I feel as if it's all my fault – if not for it returning – for being unable to feel positive and upbeat for my children, and if I wasn't here everyone could get on and enjoy living. All I want is my normal energy, no pain and to be the woman I was before this terrible malady, but that will never be. I'm now feeling guilty for posting this and bringing you all down but I'm sure you've all lived in a similar dread zone at times. Am I allowed to sound off in such a depressing manner on here?

I'm supping a cider now so perhaps there's some hope?! x

[belinda]

I don't know much about this new drug but hope it's marvellous for you FF. x

[Stillhere]

Hi funny face, I think that the Ibrance(palbociclid) is not chemo but a targeted therapy which inhibits the kinases 4 and 6 which fuel tumour growth in ER+ breast cancers. I'm no expert btw!! It just interests me as I feel that there's not many new treatments for us. I'm sure you'll learn lots if it is the next treatment for you xx

[funnyface]

Silly me I new letrozole was a hormone and assumed the new drug ibrance was too. It's chemo so I won't be having a chemo break like I thought. 

[rosie53]

Lynn, I'm soooo pleased for you, that's fantastic new!!! Get yourself a cheeky glass of wine 😉

Hugs Janette xxxxxxx 

[Lynnq]

Yes of course I am very happy... The pain was a trapped nerve they reckon.

Pleased that it has put a smile on your face Marie.

[Marirose]

Lynnq what great news it gives others hope xx

[LemonDrizzle]

Lynn, that sounds like fantastic news which needs celebrating x

[Marie123]

Hi Lynnq, I too have just started Letrozole, I know we are all different and all cancers are different, but you have just put a big smile on my face. Great news for you , celebrate and enjoy. Love Marie xxx

[belinda]

Hi Lynn, bone mets can be lytic, which causes holes, or blastic where you get a continual build up of bone which actually weakens it. Like you my mets are lytic. Sounds, to me, your bones are showing signs of healing, not active.
Have just started Letrozole so great to hear it's working well for you. X

[Lynnq]

Hello everyone, just spent an age reading a couple of weeks past posts on this thread.

I have not posted on here for a while although I do read most days....and posted a few days ago when someone asked about Letrozole, since I have done so well on it.

I had horrid neck pain and onc organised an MRI scan for me about six weeks ago, well I got the results yesterday. I know it was a long wait but I was confident that they would get in touch if there was anything untoward. The gabapentin helped with the pain, I am no longer on hem and expect the physio to discharge me after my next appt.
Anyway, the onc told me that the MRI showed wear and tear, and he then said - but we can't find any cancer!!
He said that the Letrizole was certainly working well!!
He wouldn't say there was none there, could be a couple of cells remaining, but they aren't visible. These mets were initially found on a bone scan over 2 years ago...would they just go? I thought that even if bone mets were healed that they still showed as scar tissue.

They were described as -"having a lytic appearance'. Does anyone know what lytic means. Of course I am very pleased that they're not showing, just a little confused.

[belinda]

Hi again FF, my hair is only just growing back from Paclitaxel, you shouldn't lose it on Femara. Not long until the wedding now! Rest up, no trying to do stuff before you're absolutely ready! Take care! Belinda. X

[funnyface]

Edwina, Cape worked for 2 years for me. I had very few side effects. I hope you get a long run. Stillhere, yes I live in the US. I live about an hour west of Philadelphia. I used to chat on here quite a few years ago, then talked on a private group that has dissolved. I have been chatting with Belinda since 2005! I can't believe it's been that many years. Belinda all my blood work was fine. The SOB has made me tired along with the chemo. I think this will be a good break for my body. Did  you lose hair with femara? Trying to keep my hair for the wedding. Hugs, FF

[Stillhere]

Wow FF, I hope that you get the new palbociclib with the femara. It is a new drug that I have been reading about and mentioned in a post on the forum. It has been approved in the US after successful trials both there and here.
If you do get on it, keep us posted!! Do you live in US? I haven't heard of its use here yet. Xx

[belinda]

So pleased you have a plan of action now FF. I am currently on Letrozole, it would be wonderful if it worked for you, I will keep everything crossed as a chemo break would be such a rest for you. After all the chemo are your Hb levels ok too? Ask as I was very breathless and weak as a kitten when mine were low.
Rest up, hope you feel stronger and more yourself very, very soon. Love Belinda. X

[edwina64]

Hi Funnyface glad to hear you are getting a new plan now. I had femera for a year with only mild se and it worked great. I am waiting to start a new plan soon ...cape. I feel worried and hopeful at the same time strange! Hope all goes well good luck x

[funnyface]

Ok working on POA with oncologist. Gemcitabine has failed after 9 months. My tumors are stable, but the complication I have called ground glass opacity increased. Also there is some fluids in lungs. According to my onc gravitating can cause pneumonia and some rare toxic effect, so I must stop it. He feels my shortness if breath is from the chemo. He is putting me on O2 only when I'm moving around. He thinks my breathing will improve in 6 weeks. The new plan is two drugs. One is letrozole (femera). The other is ibrance (palbociclib). It is a new drug given with femera. I will know in few days if this combo is a definite. Waiting for insurance approval. I only ever had 4 months of Lupron injections and it didn't work. This is the first time since then that I got him to agree to try a hormonal. I have had 9 1/2 years of chemo. If this works it should be a huge break for my body. Hopefully the medications and oxygen will get sorted out in a few days. They brought the wrong O2 equipment today. The oncologist gave them a different order than what he told me. Will be calling him tomorrow. Sorry I have been quiet, I will pick back up once I'm sorted. Just feeling overwhelmed. FF

[Barton]

Hello, edwina - sorry I didn't post a link - don't know how on here! I see others have done the technical bit, though! Excellent.  Sorry, still can't do a new paragraph from my tablet, but just wanted to wish everyone else good luck with treatments, se's, etc. Hugs, Barton.x

[rosie53]

I second that Belinda, hello Helen and Chocolates 👋👋hope your both okay, I assume Chocolates is busy with end of term stuff?? Helen hope the blitters are not giving you too much pain.

Hugs Janette xxxxxxx 

[belinda]

Just a shout out for Helen and Chocolates, no pressure to post just to say missing you girls. 😎 😎 xx

[JulieD]

great minds .....xx

[June_BCC]

Thank you JulieD and Belinda for posting the link, you beat me to it.

take care

June

[belinda]

Sorry Julie, crossed posts. 🙂

[belinda]

Hi edwina, here's the thread, click on this link,
http://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Xeloda-Capecitabine-Your-Top-T...
I was on Capecitabine for 4 and a bit years, hope you have a long time with it too. X

[JulieD]

Hi Edwina,

Sorry to her that EE has stopped working for you. I haven't had Cape myself but know lots of women who have got on very well with it, To find the thread Barton was talking about look in the I have secondary breast cancer section there should be a heading for treatments if you click on that you'll then see a list and you should be able to find it there

I think this is the right one 

https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Xeloda-Capecitabine-Your-Top-...

Good luck xx

[edwina64]

Hi Barton...how do I get to the treatments page?

[Barton]

Hello edwina. For advice about Capecitabine, there is a quite lengthy thread on the Treatments and Medical Issues section in the Secondaries area of the Forum. I am currently enjoying a break from Cap, but all the lovely ladies on there were an amazing help to me when I first starting taking it. Good luck, and best wishes (sorry your current treatment is failing). Hugs, Barton.x

[Elily]

I've been on Cape twice and have found it quite easy. The main side effects for me have been hand/foot (Plantar Plantar?) so you do need to stock up on creams such as Moo Goo or Udderly and use regularly (socks on feet at night help). Other SEs - dry mouth/metallic taste. I work full time with a four hour commute daily, and still manage OK. Obviously as it is chemo you have to be careful and watch out for temperature increases, but I haven't had any real problems.

I took 4 x 500 mg tablets twice a day.

I felt much better on Cape than on hormone treatment such as Tamoxifen or Letrozole and had far more energy.

[rosie53]

Hi Edwina, sorry to hear your results were not good, don't know anything about Cape but I'm sure someone on here will be able to give you some advice.

Janette xxxx 

👋👋 quick wave to Helen, hope your okay hun xxx

[edwina64]

Hi everyone...well onc rang with my scan results today and after 8 months they have seen more progression so the e/e combo i am on is definitely  not working. I have had loads of se with e/e so disappointed and a bit scared! Now going on to cape and would like  any advice please ladies. Hope this works for me...when you get bad news you worry nothing will work.  Best wishes to everyone x

[jenny29]

Hi i havent posted for a while and sad to see that we've lost bev.

[Marirose]

Hi FF sorry to hear you are going through it at the moment as the other ladies have said your onc will sort you out what treatment is best for you but I wish you all the best for your scan and you will go to the wedding sending you good vibes xxx

[rosie53]

Hi Belinda, I'm useless with technology but I phoned and told my son about it,  he watched the video and has ordered me the CD said it should come in the post tomorrow, it feels such a special song to me now and makes think of my cyber friends and how strong we all are living with and fighting this ugly disease.

Hugs Janette xxxx 

[belinda]

Hi Janette I often upload music to my iPad and make playlists, music can really lift your spirits, 🙂 the song, Fight Song, is by Rachel Platten and will be available to download from 7th August. I'm going to buy it too. X

[rosie53]

Hi Funnyface, sorry to hear your not feeling too good, hope they can get you sorted soon. Try not to worry about your daughter's wedding I'm sure doc's will have you sorted by then.

Hope everyone is doing okay, my daughter has gone to Maderia with her boyfriend for a week this so thought I would take to task cleaning her bedroom 😉 I put the radio on and the song from Holley Kitchen's video came on it made me feel all funny hearing that song, I'm guna try and  buy it I think it's such a strong and powerful song for us ladies to listen to.

Take care ladies Hugs Janette xxxxxxx 

[LemonDrizzle]

Sorry to hear about your O2 levels but it's good that you've got CT scan coming up. I hope your onc can see it before Thursday so a new treatment plan can be decided if necessary.
LD x

[scoobiesue]

Hello funny face. I am new to the forum and indeed to SBC. I have been so encouraged by the remarkable stamina of you ladies. It is so true that ladies are reporting great improvements ,even when things may seem to be failing. I wish you the very best and will be looking out for news of your scan. SSue xx

[belinda]

Hope the Onc can sort out the problems for you this week FF , so you can get back to feeling more yourself in good time for the wedding. Take care, Love Belinda. X

[Barton]

Hello funnyface, sorry to hear you are currently struggling. It sounds like you are doing the right thing by ringing your Onc to get him/her all set for your CT scan results and to be prepared. Don't rule out your daughter's wedding yet - some ladies on here have had remarkable turn-arounds after a low period. Wishing you all the best. Hugs, Barton.x

[funnyface]

Hi girls. I've been away for a few days and seem t o have taken a down hill turn. My O2 levels are fine sitting still but when I move they really drop. They have been dropping at night too. I was already scheduled fir my routine CT on Tues. and chemo Thurs. I'm going to call oncologist in the morning so hopefully he can look at my CT on Tues. and have a plan on Thurs. Very upset bc my daughter's wedding is in 7 weeks. FF

[rosie53]

Yeyy Helen great to see you posting again, I check the forum daily to see if you have posted and worry when you are quite 😯

It's good to hear that you finally have someone fighting your corner for you, keeping EVERYTHING crossed for you lovely lady 👍😉 it's about time you had some good results in your treatments!! Sending you a GIGANTIC hug.

Hi to everyone hope you are all keeping well and enjoying the lovely weather.

Hugs Janette xxxxxxx 

[JulieD]

Helen I'm so pleased to hear that at last you may getting a proper Onc! Thank goodness for K and your other wonderful support team! I hope the Taxol does it's job and when you get transferred to new Onc they will have other ideas for you too. xx

[belinda]

Morning Helen, will send you a PM re the Taxol. Thank goodness for wing women and people like K! X

[2catlady]

Good morning lovely ladies. I hope everyone is okay or doing the best they can xxxxx.
Saw onc yesterday after we'd been over to see K at Maggies. She'd been to see her hubby and asked him which drug I shout be on to try to get me a bit better so I can later be considered for a trial !

So I'm starting Taxol weekly hopefully soon. Pain in side is back giving me hell again. I said to onc I can feel big lump in side! I showed him his answer was oh yes that's a mass??!! And got back mumbling to himself again!!! Went back over to see K and she said get a referral from GP to hubby. My onc is only a specialist in radiography and not chemos!! Her hubby is specialist in chemo and trials. So fingers crossed. And a huge thank you to everyone xxxx two wonderful ladies have been my wingman and started the ball rolling and kept me form giving up.💜💜

Belinda can I pick your brains later for Taxol ?💜
A massive hug to all my cyber friends,Helen xxxxxxxx

[sallyhennypenny]

I've been away for a few days and, gosh,  there is alot to catch up on.  Very sorry to hear the news that lovely Bevlaar has died, like everyone, my thoughts are with her family.

Good to see Catlady posting again, sorry to hear you have had such a rough time xxx

I saw my chief onc yesterday and my tumour markers are now over 3,000, (that's not a typing error!) so i had a 12 minute blast  of radiotherapy there and then on a sore rib, and he is starting me on 12 weekly taxol on Monday.  Not looking forward to it as had chemo back in 2010, but glad something is being done.  Amazing what a difference it makes when you see the top dog.  He is a pretty impressive chap.

Now I'm off to see what's happening in the cybercafe...

[edwina64]

Hi everyone...so sorry to hear about Bev my thoughts go out to her family, so sad.

Sorry to hear Helen is having such a bad time hope you get on the trial soon. I had a scan yesterday and an onc appmt. I have to stop my bone inj for two months to get my wisdom tooth out. Missing jab tom and August and then get my tooth out hopefully all will be ok. Worried about scan results as last one showed v small progression so this one should tell if e/e combo is working.if not what next? Just had letrozole and e/e so far so I suppose it will be chemo, a bit scared so when I think how Helen must be feeling ...well it must be awful worrying what next! 

Has anyone stopped bone inj? What happens, should I expect my bone mets to progress.... onc said he would leave a message on my answer phone with scan results, thinking of not turning it on so I won't get bad news but oh says have to be  brave..suppose so.

[Smartie]

So sorry to hear about Bev, this disease is so cruel.

Helen, sorry the Eribulin didn't work for you. I hope the oxygen is helping and you can get onto an alternative treatment soon. Hope you are feeling a bit better.
Smartie x

[funnyface]

Very upset to hear Bev has passed. Hard to understand how some people's cancer is so aggressive. It's so unfair. 

Sarn, WOW!!!! You have a busy week. Best of luck.

Helen, Happy you are posting. Hoping you feel better soon!

[Jam]

Our thoughts are with Bev's family too. Hugs to everyone xJanet and familyx

[Macie40]

So sad to hear about lovely Bev my condolences to all her family and friends R.I.P. dear Bev x x x