Bone mets - please join in (Part 1)

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

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

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

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

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

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

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

Happy thanksgiving FF ?
Hugs Janette xx

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

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

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

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

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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

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

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

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???

Thanks for your kind replies and it gives me a lot of strength to cope with this. I start fulvestrant from tomorrow and hope the side effects will be manageable. Moijan I tried the thread on falsodex but could not find it. Can you help ?
Love to all indeed i am happy to have so much support from you Srilata

Sritata  Look again on treatments and medical issues. I have resurrected some old posts 

Bon xx

Dear Moijan and bonariensis

Thanks a lot. I found it quiet easy and didn’t feel much pain. Hope the side effects are not very serious. Love to all Srilata