Just wanted to say hello. Feeling rather anxious with how long it is taking for me to start treatment for the mets. Medical people are rather relaxed about it all but as every week goes by the worse I feel.
Hi ladies. I’m new to this forum although I was on one of the other bc forums before this awful disease reared it’s ugly head again. I was diagnosed with faulty BRCA1 gene in Sept 13 and had a double mastectomy in July 14. After the op they found a small tnbc tumour in the tissues and I started chemo in Oct 14. Thought it was all clear until a chest xray showed a suspicious area and ct scan confirmed secondary in my lung and possibly liver too. I was given the news on Christmas Eve so still very new. I’m waiting for an ultrasound to confirm the liver mets and back to see the onc on 7th Jan. The onc said it’s very small so early stage (The xray was ordered by my opthalmologist looking for a cause for an eye condition I developed recently so not looking for cancer). Told my 3 sons today and have to face my parents with it tomorrow. Feeling exhausted and emotionally drained. Looking for some advice on next steps etc.
Thanks for getting back to me Ellie. I didn’t know the receptors can change. I’ll definitely follow that up. I still haven’t had my onc appointment. Had to postpone til next week because I haven’t had my liver scan yet xx
Hello, i hope its okay to join this thread. I was told on 6th jan last week that I have secondary triple negative breast cancer. feel serile …not sure its sunk in yet. I was first diagnosed in december 13 and joined a group on here called december angels which is still a great group and all the other ladies are doing fabulous - except me, I did a full years treatment - fec-t chemo, mastectomy and radio. finished in dec 14 then it came back in the skin in feb 15. did gem/carbo chemo, a massive op to remove 15 by 13 tumour in skin and got rid of other breast and armpit nodes to - a 10 hour op and finished 5 weeks of radio on 29th dec. now its back - bit on skin about scar across shoulder, in right armpit, chest node and two spots on my right lung. gosh - what does this mean as they said I am incurable? they said I can have treatment “if I want to” and offered carboplatin for 6 to 8 cycles. I am keen to do treatment again as I want to stay alive I have small children. any thoughts does this mean I have months or a year or longer? how are you all coping and how long have you had secondary breast cancer . thankyou if you have read all this!!! xxxxxx
I have just been diagnosed on 4th January 2016 with liver mets well I think that’s what it’s called. I only finished all my treatment for triple neg BC in July 2015. Had left mastectomy, chemo and rads. I found this site a great help first time round. I’ve been too scared to look on here since my diagnosis last week. I am devastated that it has come back and so soon but then we are all feeling the same Why me !!!
This week I have been given my treatment plan and I start gem carbo chemo next Friday advice and support desperately needed please x
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.
X
Downbutnotout thank you for your reply you have made me feel better about gem carbo and if it shrinks it or better still then it’s all worth it. I felt so poorly on FEC-T . did you lose your hair with gem carbo?
My oncologist said i shouldn’t totally lose my hair but it might just thin out. My hair has taken 8 months to come back after FEC T
Hi ladies. I saw my onc on Thurs and I’m going to take part in a drugs trial for a PARP inhibitor called Niraparib which is apparently looking promising Has anyone on here heard of this? I might not get the drug tho as 1 in 3 who take part get chemo so that they can be compared. The good thing tho is the amount of monitoring. I’ll have a ct or mri every 6 weeks. I’ve also been told that the chemo is easier than fec -.t. So glad as I landed in hospital after every session of that awful stuff. I’ve been told I won’t lose my hair and I can even work. I’m really scared as are all of you. Being told it’s incurable is the most terrifying thing. I’m glad to hear of people living for years tho Kittycat40. I didn’t know that and I’ve been expecting much less. Xxx
Pippie my eye condition is an optic neuropathy in both eyes. It’s limited my field of vision but my eyes have been scanned several times and I’ve even had mri of my brain and eye sockets and I’ve been assured it’s not the cancer. That could change of course and going by my luck over the last few years I wouldn’t be surprised. Xxx
Hope all you ladies are as well as you can be xxxx
Hi worried-sick
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.
X
Thanks Ellie. Your comments are very reassuring I couldn’t imagine having days where I hardly think about this so it’s nice to hear that you do. I saw the oncologist today and I pointed out 2 lumps on my neck to him and he thinks the cancer is in the lymph nodes there. This bloody disease is horrendous!! I think it’s just started to sink in for me now. I haven’t really cried yet but today the bc nurse asked me how I felt and I burst into tears. Couldn’t speak for crying. I don’t know what happened! People are asking me that question all the time and I just say I’m feeling ok. Xxx
Hi Ellie thank you for your reply I have felt so poorly this week on gem carbo it’s caused me such a bad upset tummy then no energy and weakness been in bed all week and now day 8 top up tomorrow I’ve got no idea why I have this. Onco told me it was much kinder than FEC T so I was pleased and never asked enough questions.
Hi worried-sick
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?
X
Hiya dejbc
Sorry to hear your devasting news and it will have hit you like a steam roller. There are some lovely ladies here which will give you some lovely support.
I think in a perfect world we think we get the primary bc …have the op, chemo and rads etc and then like the measles or something it goes away but no such luck.
I am useless at medical stuff but can send you hugs and hope u get the right treatment asap.
Hugs xx
Hi like some of you on this forum my cancer changed to TNBC after 3 years. I was initially diagnosed in 2010 with mets to bone,liver and lungs. Been through hormone treatment, then more chemo after a biopsy of a liver met done after a resection revealed a change of status. Now on ebrulin. Has anyone been offered immunotherapy trials? My onc says it’s possible to stay on ebrulin indefinitely which is great for as long as it works but having less toxic treatments would be the goal. Ebrulin is working well so far.
Hiya mariposa
Welcome to our family of support and help. I’m afraid that I’m a newbie to this and have no experience of these trials but hopefully by you posting here …someone will have and be able to give you some information.
Chemo permanently sounds so savage and it would be nice for you to be able to trial another option.
Please keep visiting us here …just for support and kind thoughts.
Hugs xx
Hiya Patricia and welcome to the family. It’s a very scary time when you get dx with more than you had expected!
I’m sure once you have a treatment plan you will relax and focus. The ladies on this thread Will have a lot of experience of tn and stay with us for kindness and sometimes a bit of fun and humour.
We have a secondary closed forum which you have to apply to the moderators to join but we have a book club; tv reviewing threads and lots of things going on. Just started a thread for healthy recipes so plenty to be able to be involved with.
Hugs xxxx
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)))
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: cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-pembrolizumab-for-triple-negative-breast-cancer-keynote-086 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.
X
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
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