Spudgirl, just wanted to reiterate everything everyone has said. We are sorry you have had to join us but hope you will find this forum helpful...even if its to have a rant and a scream. We are all with you on the daughter front....we would all do anything not to put our children through this. Dont be hard an yourself and try to rest p whenever possible.Good luck with the move and let us know when you are settled and have atreatment plan. xx
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.
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.
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:
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?
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
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.
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.
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.
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
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.
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
Hi Patricia11 - my TNBC recurrence happened in 2014. The surgeries to remove it spread it in my skin and I was then told it is incurable. For my primary treatment I had FEC-T chemo and rads. My first chemo for the recurrence was Carboplatin and Gemcitabine - I got to NED (no evidence of disease) with this treatment. Although it came back I'm still well. I was given Capecitabine next but I'm one of the few people who had an intolerance to it so that was scrapped before I'd finished the first cycle. However, many ladies do very well with that, finding it an easier treatment (it's an oral chemo) and many have been kept stable for years on it. After that I was put on Eribulin and have had that for 7 months.
Don't think there are no options but if you're not happy with what you're told I would recommend a second opinion at a different hospital. My former onc didn't want to give me systemic treatment and wrote me off, so I know how you feel.
Also, there are many clinical trials at the moment for TNBC - check out the Cancer Research website for clinical trials. There's an immunotherapy one (being run at The Christie, Manchester and in London) which you may be eligible for: http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-pembrolizumab-for-trip... If you Google (though we don't generally recommend that!) there are some very inspiring stories about it for other cancers.
It's a very difficult time for you but, as others have said, once you have a treatment plan it gives you a focus and becomes less stressful. Don't give up. We're here to help you.
Wishing you the best.
Ellie and the rest of you loving ladies that you so much as your posts have helped me so much and given me hope when i had none before.
I feel calm and stronger and it is only because i feel connected to you all as we are sharing the same journey.
Bless you all and sending megga hugs and kisses
I have applied to join the closed thread so hopefully we can chat further on their if i am approved.
Thank you to you lovely ladies for welcoming me to your tread. It all happened very quickly for me as was first dx with HER2 breast cancer and had the full treatment which finished January then having herceptin and all looked great. I started back to work in February and had a new kitchen put in and i was feeling so positive about the future. I just got a clear mammogram and a doctor examied me for lumps and gave me the all clear. Then less than a month ago i got just a couple of stringy lumps along my scar line.
I was dx with TN BC Thursday and the doctor who was a breast surgeon said this cancer wont respond to chemo, I cant have rads as had in same place before and it is not operable.
I am now having a scan but am terrified they wont offer me any treatment. Please tell me was you told your TNBC wouldnt respond to chemo when you were first dx.
Any comments please as i need to have some hope i can at least try treatment to prolong my life xxx
Hello Patricia welcome
Redridinghood has posted to Stresshead in the Treatments and Medical issues board how to access the private group. It is quite good information it was easy when I first joined but it has changed since. Just scroll down the 1st page and you will find it
I hope this helps xx
Thankyou Mo you are a good un (((hugs)))
I was dx with HER2 breast cancer in April 2015 and i had mx, chemo and rads which finished in January 2016. I then noticed a stringy bumpy thing growing along my scar line in my armpit and i thought it was scar tissue but yesterday i was told the results of a biopsy and it is triple negitive b cancer. The doctor said it cannot be operated on because of its location which i dont understand, it wont respond to chemo as its back so soon after chemo finished in January and i cant have rads again. So sounds like they written me off!!
I am due to have a scan on Tuesday to see if spread further
I am numb with shock and would welcome any comments please
I would love to join you lovely group of ladies xxxx
Hi Kittycat40, it seems that we have a lot in common - unfortunately!!. It would be great to contact you directly - like you I am always researching new things. My onc mentioend that if ebrulin didint work he would refer me to an immunotherapy professor who runs a lot of trials in breast cancer. He did say that if immunotherapy is going to work it could work better for TNBC. I have also had the tumoor tested for genetic mutations.
All the best
Thanks for the replies ladies. At least I am not crying every day now just every couple of days. I had to miss treatment last week because of low bloods so that didnt help. Hopefully will get the ok tomorrow. Computers are great for getting in touch with people like yourselves but yeah I know I shouldnt go delving into the dark hole of statistics. Hope your all doing ok. x
Need to hear some positive outcomes from you ladies. Had tnbc last year for which had chemo a mammaplast and rad. Had a whole month thinking all ok only to be told about two months ago it had gone into my lungs. Absolutely devastated. Have started Gemcarbo. Try not to look at stats but when your at home all day you cant help it. Please give me some positive feedback.
I'm sorry to hear you're having a hard time with Gem-Carbo. With hindsight, my first cycle did hit quite hard in terms of fatigue. The only sickness I had was from the antisickness I was given before the chemo dose. After changing antisickness I was okay and from the 2nd cycle onwards I had a reduced dose of the Gem-Carbo and only had mild fatigue for a couple of days each cycle. The reduced dose still got me to NED, so perhaps your onc can do that for you too?
I didn't lose my hair on gem carbo. In fact it grew back after I'd lost it on a previous chemo! It does hammer your bloods and I had to take a lot of anti-sickness with it (it used to strike suddenly about 5-6 days after the infusion so if you feel even vaguely queasy start popping pills!!). Hopefully it won't affect you this way but forewarned is forearmed. Once I had the extra tablets sorted I was fine and found it very manageable.
Also wanted to reassure the newcomers that things to get more normal again. I had secondary diagnosis shortly after my primary back in May 14. I thought that there wouldn't be a day when it wasn't hanging over me. I will admit there have been tough times but there are also days when I hardly think about it or at least only think about it in practical terms such as juggling appointments. Getting underway with treatment definitely helps.
Only about 1% of people lose their hair with Gem-Carbo but unfortunately I was that one! It had taken me 18 months to get it to shoulder length following FEC-T. All the other people I know who've had Gem-Carbo have kept theirs, so fingers crossed you will too.
Hi worried-sick - I'm TN too and had Gem-Carbo chemo after getting my incurable diagnosis. Despite delays, reduced dose and cancelled treatments (because of low neutrophils) I got to NED (no evidence of disease) for a few months. I also found Gem-Carbo much easier than FEC-T - felt well and could keep a good level of fitness.
Best of luck with everything. It's such a horrid time when first told it's incurable.
Hi Sarah any cancer spread (mets) is incurable but most are treatable. Please say yes to anything going is my advice. There are quite a few treatments out there and not just chemo. Ask your onc about surgery and radio as well. Everyone's prognosis (time left) is different depending on how you respond to treatment. There are lots of positive stories on the forum and some people live for many years. It is very hard to get your head around. I find some days are easier to cope than others. All the very best to you big hugs xx
i was was wondering about your eye condition, did the find anything in your eye. I have been diagnoised with eye mets in Dec 2015 and looking for anyone else who may also have this condition, which I am told is rare. I did post a week ago but haven't found anyone else.
I was diagnosed with with mets in spine, ribs and lung, with a side order of athritis in neck and cataract in both eyes in Jan 2014.
Hello lovely ladies I am so sorry to see you having to join us on here. It's a very scary and worrying thing to go through. I have secondaries in bones, pleura (fluid around lung) and liver. I have new liver mets so am on Eribulin chemo at the moment. I don't come on here as often as I probably should but please message me if you need support or would like to ask me anything. I am no expert but was originally diagnosed in 2007 so have picked up quite a lot of information! I have had various treatments as was originally hormone positive but with massive thanks to Nicky on here that I had my receptor status checked and found I am now triple negative. No wonder none of the treatments were working!! I have also had SIRT (radiation beads in liver). They appear to have possibly kept the original tumours in the liver stable apart from 1 which had grown a little but of course they don't work on any new ones. I am always reading and looking into any other options. The Oncs don't always tell you what there is out there. They just seem to follow the usual procedure. I find it helps me being a bit in control of my own illness. Going to be looking into more things soon so if I find anything I will post on here.
I am am using a mindfulness app Headspace which seems to help. My motto is to try to not to let the fear and sadness etc overshadow today while I am here and living. Not always easy to do but I try to!
Love and best wishes to you all xxxx