Bone mets - please join in

[ramade]

Srilata, sorry you've had to change mets but hopefully you will do well on fulvestrant, others seem to. As for skin cancer, I have had 7 cancers removed from my face and head last year so maybe we have a similar cancer that goez to the skin. Stay well and stay brave

ramade xxxx

[Moijan]

Hello everyone...yes am on fulvestrant and was very apprehensive as I don't like injections...but these have so far been fine..do join the thread Carolyn mentioned...it's so lovely to have buddy's to Travel with xx

but keep up on this one too...it's a great thread and we all have such fun togetherxx

Moijan💚💚💚

[Ladybird2]

Hi Srilata
My wife Ladybird has just gone on to Fulvestrant after two and a half years of Letrozole. She has a lot of leg pain but no more than she had with Letrozole. In fact she has suffered with leg pain for years probably caused by trapped nerves in her spine! Her mets are in her pelvis and hips.
The injections themselves caused very little discomfort and so far all's going well.
Good luck
Chris

[Carolyn52]

Hello shrilata
Moijan started a new thread on treatments threads recently for fulvestrant ( faslodex) .so if you pop along there you might find some tips and information.
There are lots of older threads too ..if you use the search box. .not sure what is happening in the UK but I think this drug has to be funded by the hospital from their own budget ..hence the reason not many ladies are having it ..
As usual, I have no experience of this but I do hope it's a good regime for you
Hugs xxx

[Srilata03]

Dear FF and Kate, thanks for your kind assurance. So far what my onc observed that these are skin mets and they will do a skin biopsy. My medicines will also be changed Fulvestrant injections . I am hoping for the best and trying to remain positive as much as possible.Is anyone on this injection
I will be happy to have any advice regarding the treatment ,side effects. FF hope your pain is better and the scan reports are good
Love srilata

[Kate21]

Glad to hear you’re feeling a bit better. I asked and was told, my trigger finger is nothing to do with my bone mets, but is almost certainly due to the Letrozole. It’s very difficult to be sensible and positive all the time, I got my scan result on Wednesday, appointments were running late and the HCA asked to speak to me, my immediate response was, what’s wrong?? Poor woman kept apologising as she thought she’d panicked me, fortunately I’ve seen a lot of her over the last two plus years and reassured her she’d only have to look at me and I’d assume the worst when waiting for results!! At least you don’t have too long to wait now, take care, Kxx

[dragoncarine]

Thank you all for your reassurances, I'm feeling a little less scared now. Sometimes it's hard to be positive & sensible all the time. Most people seem to think my thumb problems are unrelated to cancer. Still it's a bit annoying as I have quite enough pain to get on with without other bits of me falling apart. Sometimes I just wish for a break in all the pain. The reflexology is good for that, roll on next thursday.

[LYNDYLOO]

Hi Funnyface

Sorry to hear you are having problems with a rash.
When I was on 10mg Everolimus I had itching from head to foot. Took antihistamine for a month got rid of the itching. Oncologist changed dose to 5mg Everolimus itching disappeared. Worth a try.

Pleased you enjoyed thanks giving.

Linda

[funnyface]

Srilata, I get a slight rash here and there from this treatment. I'm also very itchy on my legs, back, arms. I scratch myself in my sleep and wake up all clawed up. Onc told me it doesn't look like a rash from these drugs. Well, I disagree with her bc I didn't have this before these drugs. Also, I stopped this combo for 2 weeks to see if my back would quit hurting and I wasn't itchy anymore. Back on it and itchy. I didn't notice  any difference in my back. My onc said she never heard of back pain as a SE for this. She needs to read! The two weeks I stopped it to see if the back pain would ease up might not have been long enough. When letrozole failed and I switched drugs it took about 2 months for my knees to quit hurting. Good luck! FF

[Kate21]

Hi Srilata, hope all goes well and they sort it out for you. Take care, Kxx

[Srilata03]

FF,Moijan, Kate,Thanks for your kind replies. It seems like skin rash and spreading quite fast. So I am not waiting for my next appointment and will see my onc today.
FF happy thanksgiving.The festivities are so much fun. Love Srilata

[funnyface]

Thank you Carolyn, Dragoncarine and Rosie, I love Thanksgiving. It doesn't involve all the decorating and pressure of presents. The food and company is awesome. I find it very relaxing. FF

[LYNDYLOO]

Evening dragoncarine

Just want to put your mind at rest. Don't think trigger finger is anything to do with bone mets or cortisone injections.

Over the last 8 years with bone mets I have had trigger finger in right-hand thumb middle finger and small finger.

I read somewhere Letrozole can cause trigger finger.

Hope MRI scan results show up nothing.

Linda

[Kate21]

Hi dragoncarine, afraid I can’t offer much help other than appreciating how uncomfortable trigger finger can be, as I get it from time to time but not as badly and haven’t needed any treatment so far. I know it’s a side effect of Letrozole but not one of the more common ones, I’m on Letrozole so assume mine is down to that. I knew treatment is steroid injections, as I asked my GP in case I should need any and I heard a doctor talking about it on the radio who’d said the same. That makes me ask, would they use them if they encouraged mets??? I really don’t know but would certainly hope not, or at least they would make patients aware of it.

Sorry I’m not much use and appreciate it’s easy to say and hard to do but do try not to worry too much, do you have any idea when the MRI will be? Btw thank you again for the book recommendation, it arrived yesterday and glad I ordered it. Take care, Kxx

[dragoncarine]

Hi everyone. sorry to be a bit negative but I'm feeling really down at the moment. Went to see Orthopaedic chap today about my thumb because 2 oncologists and 1 radiographer were quite convinced that the pain is nothing to do with my bone mets. and more likely to be a returning of the trigger thumb I had diagnosed, and successfully treated in feb (before I knew I had bone mets). Feeling is different this time and specialist decided that my hand needed an X-ray which shows up something on the bone, so now waiting for MRI scan appointment. All sorts of questions:

1) was the original trigger thumb diagnosis actually wrong and it was cancer all along?

2) could the cortisone injection I had to treat the triggering have someone "encouraged" the cancer to go into that area?

3) Why is everyone so sure it can't be another bone met - what is it then?

4) And I know the answer to this one: should I just try to relax and not worry and wait for MRI result?

PS most of the time I'm really thankful for my life and the good things I have. I think thanksgiving day is one of America's better ideas 🙂

[Carolyn52]

Hello funny face
Happy Thanksgiving. .I know it's a very big day for you in the US. ..so enjoy. ..
Well after all that weight loss you deserve a new wardrobe of clothes so splash some cash and treat yourself ..
Hello to everyone. .sorry been a bit absent lately ..hope everyone is coping ..
Hugs xxxx

[rosie53]

Happy thanksgiving FF 🎄
Hugs Janette xx

[funnyface]

Thank you Bon and Moijan! We are going to my daughter's FIL. He is about 2 1/2 hrs away.I work tomorrow but I'm making a turkey and all the sides on Saturday.I love having the left overs for a few days. I'm trying to be good though. I'm down 95 lbs. and would love to make the 100 lb mark. We are about ready to leave and I just went to put on my dress coat. OMG, I can't wear it.It's so big the sleeves are hanging past my finger tips.Not to mention I would need to tie the waist with a rope to cinch it in. It's hysterical. Guess I will be wearing a fleece jacket. Hubby bought me a new ski jacket type coat for Christmas and said I can have it if I need it, but I'm trying to wait. I never gave my dress coat a thought. I will have to look for one on sale. FF

[rosie53]

Yes l also use First Defence, it does work!!
I’m paranoid about catching the dreaded lurgy!!
Hugs Janette xx

[Moijan]

Yes FF, so do I. Love to you.

Bon, have pm'd you xx

best wishes to everyone...btw, I've started carrying the blue strepsils around in my handbag now as everyone I meet seems to be coughing and spluttering..went to see my go today and the poor receptionist  couldn't speak..said there were loads of staff off with it.

i tend to carry' first defence' around in my bag always too as it does clot any bugs which reach the nose and stop them multiplying.... has worked for me for about 16 years....only get colds when I forget to squirt it into the sides of my nostrils,.... well worth a try.

love and best wishes

Moijanxx

[bonariensis]

Hi FF

Hope this Thanksgiving is a good one for you and all your family. love Bon xx

[funnyface]

Silrata, When I had ny scan in Aug my Inc said that it mentioned an enlarged lymph node above my collar bone. She said she looked at my scan herself and didn't really notice it. I was freaked but didn't want to ask questions. When I had my scan results 2 weeks ago she didn't mention it and I decided not to ask. She also didn't elaborate on my scan as much as she usually does. I kind of didn't ask since it is holiday time and granddaughter to arrive in Jan.My next appt and scan is in Feb. I will ask more then! FF

[Moijan]

Hi Srilata

i understand how scary this is for you. The only thing I would say, is that Consultant Oncs are,  by the time we see them, pretty experienced physicians, and altho oncs can get things wrong....I think that if he were certain it was due to bc he would hopefully act  to treat them....also, if they are painful, that would sound like they could be due to infection...let's hope so. Have you checked your temp?

nowadays, these very  expensive pet scans can pick up cancer much more expertly than before and with any luck it's an infection.  Yes googling can be very scary...and make things sound definite.....I did that in the summer, thinking I'd got skin mets round the scar, but they turned out to be from the rads I'd had yonks ago.

very best wishes for some good news.

Mx

[Kate21]

I really don’t know anything about this Srilata but just as a suggestion, did you have any bloods done? Only with infection often your white cell count will be raised. Not saying if it isn’t it isn’t infection but it is an indicator. Sorry I can’t be of more help. Have you tried asking your breast care nurse? That said, ones I encounter never offer me much support! Or your GP? Hope you get things sorted soon. Kxx

[Srilata03]

Hi, Does anyone have any idea of bc metastasis to cervical nodes near the neck. I have small swollen nodes near my right collar bone and neck. PET CT shows mildly metabolically active suspected mets.My Onc says it can also be infection and he wants to wait and see if it is growing. The swellings are quite painful . I am so worried . Can anyone help with some information i will be really grateful. The internet sites also doesn't say much about this.Love Srilata

[Moijan]

Hi Juma, believe it or not, oncs are often very pleased when patients seek a second opinion...the job carries a load of decision making responsibility and they welcome patients just exploring wether there are other options.

just to say tho, Cape IS a very effective drug and if you look on the 'Capecitabine your top tips please' thread, you will find that some people, like Barton. Have had their bc controlled on it for a long time. I had it for about 21months before having to change but there are some who find it works much longer. You are also fairly needle free as it's a tablet.

best wishes and good luck

Mx

[Moijan]

Hi Rosie,

''see how well you managed her!.. yes it's very unheard of for that to happen......maybe she has had her own troubles (been wrapped up in them)and your feedback gave her just the kick in the *R** she needed 

I think you might find she is very different now.....hopefully. I realise you probably feel a bit awkward in seeing her after your 'frank feedback' but it could be a good idea to give her one more chance before changing.....I know doctors can be missing the rapport gene....but you could change and then find your new onc is worse in some other way......just a thought.

i know the Christie is excellent and loads of oncs, but In your place, as you say, I'd give her another chance...it is really very hard changing and a lot of internal stress - I have a feeling she may now turn out to be very responsive.....they worry about getting complained about .

best of luck

Mx

[ramade]

Hi Juma, I am interested to read your post because I was told I had a spread to the lung following a ct scan. I was in a lot of pain in my hips, shoulder, could barely move my arm. So I got an opinion from a different hospital who looked at the same scan and said no lung spread but extensive bone mets. I got a gp to refer me to that hospital where I have had a lot of radiotherapy to save my spinal cord. I don't want to mention the names of the hospitals just to answer your question-for me it was the best move I have ever made.

ramade xx

[Juma]

Hi all, I relatively new here with initial diagnosis of stage 4. I was wondering whether somebody could share their experiences of gaining a second opinion? Not for diagnosis but rather treatment. My PET scan results showed extensive bone Mets which didn't show on the CT scan. I have met with my oncologist who has prescribed capecitabine. I don't doubt that it is an effective treatment but given my circumstances I'm not keen just getting one opinion. Has anybody found it an easy / difficult process or have any advice? Thanks J

[rosie53]

Hi Moijan, guess who I had a phone call from this afternoon.....my oncologist!! I nearly dropped through the floor, she rang to say that she has requested a bone scan as well as my routine CT, she said nothing to worry about it’s that it’s been a while since I had one. My oncologist NEVER rings me! Maybe having words with her last week has made her sit up bit. I remember about 18 months ago having to really pressure her for a bone scan as I hadn’t had one in a while and was getting a lot of hip pain, she said they are not routinely done anymore because of the nuclear medicine is quite high.
I’m under The Christie Hospital so there are lots of other oncologists I could change to, I’m going to have a chat with my GP about it and/or see how things are in February at my next appt with her!
Hugs Janette xxx

[Moijan]

Oh and Rosie,

try setting out all your questions on paper or your iPad, you can then hand it over. I'd also take a advocate with me...a hubby, friend etc to note down replies,xx

M

[Moijan]

You know what Rosie, well done!  I changed my surgeon because his bedside manner was appalling.

i found it a relief, but also a bit stressful because I wondered if the next guy would then worry that I would complain about him! However, the surgery bit passes quickly and now I'm under a lovely onc and I guess they know too about the change, but it's about 16 years ago.... so I may have lived it down!  

As you have tackled your doctor, you might find she is completely different next time...you could go along and just see...are there loads of hospitals near you? I mean maybe do a bit of research first before acting.

in the south we have quite a few options, but I still asked a senior nurse friend who worked in the field and she recommended my new surgeon as she had heard from quite a few ladies, just how very nice he was....and he was too. Sadly he died a few years after that.

best of luck with it xx

Moijan

[Carolyn52]

Hiya Jeanette
I blame myself for being dismissed from. Oncologist appointments as I'm so scared I just want to escape but I must man up a bit this time and ask things. ...
It's about time we secondary ladies were given more priority and not written off ....everything is pink fluffy and tickity boo with the media. .
Glad u had a good trip ...lovely a wedding to focus on and a new outfit /hat !! then maybe a honeymoon baby for them! !
Hugs xxx

[rosie53]

Hi ladies, hope you’re all doing ok.
FF, Corsodyl mouth wash (chlorhexadine gluconate) is very good for mouth ulcers, I have always suffered with them and I know how painful they are!! Hey I get my next in February too and results day on the 15th so we will have scanxiety together!!
Has anyone ever asked to be changed oncologists?? I haven’t been happy with mine for some time now, I find her quite dismissive and feel like she just wants me in and out when I see her for results, there have been a few times when I have had worries/questions for her and I feel like she is just not interested, I actually “manned up” last week at my appt and told her this and she was gobsmacked as I usually just sit there quietly, I’m just sooo fed up with us secondary ladies being brushed aside!!
Anyway on a brighter note I had the best 50th birthday, Amsterdam was a blast! I got totally spoilt by my family and friends and the best news came from my daughter and her boyfriend, the have set a date for their wedding 12th Oct 2019!! I’m just so happy and excited for them......wish it would hurry up so they can get on with giving me a grandchild 😀
Hugs Janette xxx

[ramade]

 And you ff, hope you're improving.my mum does armchair aerobics at her home, maybe your people could try that, not too taxing on the back.

hugs

ramade xx

[funnyface]

Sorry you are in pain Ramade!

[ramade]

Thanks Bousy good to hear that, mine was in 10 vertebrae so I shall try to stop feeling so anxious for 2 weeks at least. Thanks for replying. Hugs

ramade xx

[Bousy]

Hi Ramade, 

I had rads to L2 of spine last Christmas and was told 8 weeks for pain to go and it was 8 weeks exactly. Hasn’t recurred since. Good luck , Hope pain goes.

Liz

[ramade]

Hi there, has anyone had radiotherapy to thoracic spine, I finished this treatment 6 weeks ago and am in more pain now than I was just after. Am on painkillers but getting very anxious that itshould be better by now.

Thanks

ramade

[Barton]

Hello, ff, I am glad to hear you haven't got compression fractures, but it still leaves the mystery of what is causing your pain. I do hope your pain is sorted out soon and proves to be nothing sinister.

Hugs. Barton.x

[funnyface]

Carolyn, I'm still going to work. I missed 2 days when it was real bad and last Friday when the ulcers were bad. Not sure if they were from meds or a virus. I'm just careful what I'm doing at work. I have limited the active activities. No balloon volleyball, parachute or waving ribbons and ties. Lol as simple as these sound in involves a lot of twisting and me bending to pick up a ball every few seconds. I'm going to start putting them back in the program, but for less time. I need to build myself back up, but not til I get my MRI. FF

[Carolyn52]

FF....I need a broomstick. .you must be psychic as I was just going to pm you to see how your back is doing.
Assuming that you are not able to go to work at the moment either ..Shame as you had only just started it recently but health before wealth !!
Hope it all settles down ...blame it on old age maybe !!

Hugs xx

[funnyface]

Thanks Silrata and Barton, I have improved over the last few days. I have kept moving but being careful what I do. No stretching or twisting! X-Ray showed no fracture. CT said no changes but was compared to the x-ray. Should have been compared to previous CT! Having an MRI on the 28th. Possible bone scan after that. I feel it could even be a small change that might have out pressure back there. Before I got real bad off and on I had burning feeling there sometimes.

I know not everything shows up on scans.When I first started with mets I had a ton of post nasal drip, coughing from it, and this weird sneeze. If I was active I would clog up so much I would get sick. The sneeze I had would start as a tickle in my throat and I would sneeze out my mouth not my nose. I'm not exaggerating! I could sneeze  a 100  times a day. Onc told me he didn't know what was going on but that the lung mets couldn't cause this. I read on-line that lung mets can cause post nasal drip. I went through this for 7 years until they decided I needed radiation bc a tumor had almost closed off my bronchus. After about a week if radiation to my bronchus the lis t nasal drip and sneeze were gone! It's been 5 years! My onc said the radiation couldn't have fixed it. Radiologist said she doesn't know what it could have done but maybe it did. Lol! I know it did!! I don't know how either but how else did it get fixed!  So, I believe we are each unique and these drs. don't know everything.Test don't show everything either. FF

[Barton]

Hello Srilata, I, too, have had several compression fractures!

FF, the pain was awful! Muscle spasms every time I moved and I couldn't lie down to sleep (I couldn't get up again if I laid down!). I slept sitting up for about 5months. After a hospital visit for not being able to get up off the GP's table (where I went for back pain), I was told it was just muscle pain and was not given an Xray. A visit to my Onc a couple of weeks later, and she offered an Xray, which showed compression fractures. Just sitting in a car was torture - especially going over any kind of road bump! So house-bound for several weeks. I was told to keep moving as much as possible, and I'm sure that has helped in the long run, although very painful in the short term.

Hugs, and best wishes. Barton.x

[Srilata03]

Dear FF,
I had similar shooting pain in my spine and couldn't lie down or get up from bed. Bone scan showed extensive spinal mets with vertebral compression. It was pressing a nerve. Did you have your bone scan ? I am sharing my experience if it is of any help. Compression or fracture may cause the pain.Rest as much as you can 💐💐❤

[Carolyn52]

Hello ladies

Well that's good news announced today that iBrance and kisquali is available in England for many ladies now ...I'm sure many will meet the criterIa for it here so it's another option if our existing treatments fail us ...
Fingers crossed there will be lots more options like these for future ladies ..maybe not in our lifetime but further ahead ..breast cancer will be like the measles and fizzle out so younger ladies don't have to endure all this .
Hugs xx

[Carolyn52]

Hiya Moijan
Just reading online that bananas act better if u eat them more with the black spots on them ( I usually bin them !!)

[Moijan]

Kate, yes, magnesium. I also sometimes eat a banana at bedtime...this has magnesium in and can help sleep.

Mx

[Moijan]

Yes, absolutely...but really....a gp?

I am surprised...maybe she's new?Love and hugsxx

M