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Triple negative secondaries/ recurrences

Community Champion

Re: Triple negative secondaries/ recurrences

Spudgirl.
How awful for you to have to do a double whammy with dx and then moving . Your daughter must be quite young and so hard for her to have to have that sort of news.
Kids do adapt and are quite resistant to life but you must also focus on your treatment plan asap when you get back to the UK.
It's such a hard life but we women are tough cookies and cope somehow
Keep in touch with us as there is such good support and kindness here as we are all on this roller coaster. Once you know which treatment you are going to be on ..there are special threads where there is always help and experience.
Hugs xxx
Member

Re: Triple negative secondaries/ recurrences

Thank you so much.

 

i broke the horrible news to my daughter about half an hour ago,  first about the cancer - massive sobbing, then about leaving here - massive sobbing, then about the 2 week timeframe - massive sobbing.

 

It felt awful.  My heart completely breaks for her.   However she has now told me she wants to go to school tomorrow as she has a French test she wants to do and they are also cooking Brownies.  

 

Ive told her if she wants to come home at any point, the school can ring me and I'll pick her up.

 

i still feel like I'm in the middle of an terrible nightmare and I'll wake up soon. 

Community Champion

Re: Triple negative secondaries/ recurrences

Hiya spudgirl.
Welcome to our family.it's always hard to take in dx of secondaries but coming back to the UK is a good move ..we moan about nhs but most times the treatments are wonderful.
Once u meet your oncologist and get the treatment plan you will b able to focus.
There is loads going on here if you want to join
The private forum where we have a book club photo gallery and loads of topics running.
The busiest thread though is the one " bone mets" ..always a bit of nonsense gping on there to cheer you up a bit as well.
Xxxx
Member

Re: Triple negative secondaries/ recurrences

Good morning.  I'm a newbie to this thread.  I had TN breast cancer in 2013 and yesterday I got told I have a 1cm lung met and 1cm breast bone met.  At the mo I live overseas, me and my family are being repatriated to UK within next two weeksso I can start treatment,   So I've got a massive move and a cr@p diagnosis to deal with.  I also have to tell me young daughter tonight, I am devastated for her as not only does she have to deal with this, but also that she has to move countries and school and leave friends.  I don't even know where we will move to yet! 

 

i don't know where to start with reading through all the info on this site.  My mets sound small, so that's a positive isn't it? 

 

Im feeling a bit lost. 

 

xxxxx

Community Champion

Re: Triple negative secondaries/ recurrences

"Bumping this posting up for Arnie.
Member

Re: Triple negative secondaries/ recurrences

 
Member

Re: Triple negative secondaries/ recurrences

 

already posted in here oops sorry x

Member

Re: Triple negative secondaries/ recurrences

It could well be the chemo. Many of them cause a bit of numbness or tingling to hands and/or feet. Worth mentioning next time you see someone for treatment. What chhemo are you on? There is bound to be at least one thread on it in the treatments section where you can pick up tips on dealing with any side effects xxx
Member

Re: Triple negative secondaries/ recurrences

Thanks Elliie for your kind words, I'm again on here in the wee hours having woke from a nightmare with tingling feet, just wondering if the  side effects of chemo has brought this on: 

Community Champion

Re: Triple negative secondaries/ recurrences

Hiya Patricia
Just wanted to send lots of good hugs and thoughts for tomorrow.
Please let us know how you get on .
Hugs xx
Member

Re: Triple negative secondaries/ recurrences

Hello you beautiful ladies

 

I have an appointment for the results of my CT scan tomorrow so i am feeling shaky this evening I just hope the TN cancer has not spread anywhere else from where it was found off my scar in my axilla. Just fearing the worst.

 

I am assuming that i will now have to retire from work as treatment will be for the rest of my life.  Is anyone managing to work still whilst having a secondary dx and treatment?

 

Tricia xxxx

 

Member

Re: Triple negative secondaries/ recurrences

Patricia,

I got my secondary diagnosis a week after my MX so I went from expecting a year of work for treatment and recovery to not knowing whether I could go back. In the end after about a year I tried to negotiate new, shorter hours but they weren't willing to accommodate. I went through my union and in the end accepted a settlement and left on the grounds of ill health. This was a better option for me than ill health retirement as it means I could still go back to work if I feel up to it in the future. I used to teach 3 days a week. I now work as a teaching assistant 5 mornings a week which pays loads less but doesn't eat into all my evenings and weekends like teaching did. I do also claim PIP which definitely helps xxx

Member

Re: Triple negative secondaries/ recurrences

Hi Blanna, welcome to the forum. It's the club no one wants to be in but it's a really great place to ask questions, get support or even just have a rant! 

I have Lymphodeoma too - one of my chemo's seemed to set it off and I got it in both legs as well as my left arm! It has settled down a lot now bit I remember being in agony just trying to get my shoes on. Make sure you get seen by the lymphodeoma nurses as they can do lots to help manage your symptoms. I hope things settle down for you soon and you get some good results from your treatment. 

 

Ellie xxx

Member

Re: Triple negative secondaries/ recurrences

Hi all,

Im in that weird place of being secondary/ecurence TNBC, but only in my neck area and not spread to any vitals or bones at this time. It was really scarey for a while as I only had two small raised nodes in my neck in February, when I had the FNB (fine needle biopsy) the cancer seemed to explode around my neck, I ended up with severe lymphedema and in a lot of pain as well as restricted movement  to my left side. I am currently on a lot of pain meds and Im on my week break from my weekly infustions and Ive found a lot of my mobility  has come back, Im hoping something is happening and now I am able to sleep more comfortable, find myself getting more angry with everything around me. Im off work at the moment and Im not sure if I want to go back. 

 

xx

Community Champion

Re: Triple negative secondaries/ recurrences

Hiya Patricia.
Welcome . If you do decide to retire you can Claim pip which is available to all with secondaries. It's not means tested and could make life a little easier financial for you.
A lot of ladies here like myself have it. There are a lot of threads available for info.
Hugs xx
Member

Re: Triple negative secondaries/ recurrences

Downbutnotout thankyou for your post which has really helped me because i just dont think im gonna be able to cope with the stress of work whilst having treatment, especially as the treatment will probably be for the rest of my life. I am frightened by like you i am sure i will adjust to the reduced income and imbrace my free time to make friends and get a life. xx
Member

Re: Triple negative secondaries/ recurrences

Hi Patricia

 

Sorry you find yourself in this awful situation.

 

Just from my experience, once I started on my recurrence treatment it hit my neutrophils so hard that I avoided work because of the high risk of infection. I went back full time after reaching NED but stayed away from the office when I had to resume treatment again. After having much time off work - though my employers were very supportive and didn't pressure me at all - I decided I wanted retire and have some time to be free of the worries about work and to do things I want to do. It was hard initially but I'm so glad I did it now. I figured as long as I had enough money to get by it was the best option for me.

 

My pension service provided me with an estimate, which helped with the decision making.

 

Good luck with whatever you decide to do.

X

 

 

Member

Re: Triple negative secondaries/ recurrences

Hello Lovely ladies 

 

Can i ask whether any of you have managed to work with sbc and its treatment?   I have only just returned to work mid February 2016 after ten months absence having treatment for primary cancer so i am devastated having now been told i have cancer again in my axilla scar and need treatment and fearing the worst have asked for retirement but giving up job and income very hard.

 

Any comments will be so welcome xxx

Member

Re: Triple negative secondaries/ recurrences

Hi bazcas - although I felt very well when I was on Gem Carbo it really hammered my cell counts. I was regularly neutropenic which meant I had a lot of delays, dose reduction and cancelled day 8 Gemcitabines. Also, I had to have a few blood transfusions and one platelet transfusion. I only had daily GCSF injections when in hospital with an infection. Yes, the blood cell boosting injections do cause quite a bit of pain. I used to get awful neck and bone pain when I had Neulasta with FEC-T - in fact, I'd forgotten about the neck pain till you just mentioned it.

 

I hope you can get something to keep the pain under control. Gem Carbo was a great treatment for me as I ended up NED for a while so I hope it has that effect for you.

 

Best of luck with everything.

X

Member

Re: Triple negative secondaries/ recurrences

Hi I am currently on Gem/Carbo for mets to Liver and Spine  and have two more sessions remaining out of 6. Last month I had to have 1 xplatelet tranfsions and 2x blood transfusions, Since then my Nutrophils have plummeted and I have now started on G-CFLS injections to pomote my bone marrow. After having my 1st injection yesterday I was in agony with neck pains and I have to say I do not feel like myself. But hey ho I know I have to have them to enable me to finish the chemo. Has anyone else had this poblem, I will discuss pain relief with my nurse on Thursday.

 

Good luck to akk

 

Suze x