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Triple negative secondaries/ recurrences

Member

Re: Triple negative secondaries/ recurrences

Well writing the letter worked!! I had a call today from one of the oncologist's secretaries to say that I will be seen by my usual onc. next Friday. So, will get the answers I need in a caring way.

Meanwhile I am enjoying the 'chemo break' by travelling around visiting friends.Smiley Happy

Member

Re: Triple negative secondaries/ recurrences

Hi Lulu,

He did say to try not to worry too much!!

I had already told him that I had written a letter to the Cancer Centre requesting to see my original onc. & he said I needed clarification of their previous findings.

Hugs to you,

Monica xx

Member

Re: Triple negative secondaries/ recurrences

I also have heard that expression too Monica. Surprised your gp didnt try to reassure you. Xxx
Member

Re: Triple negative secondaries/ recurrences

Thank you Truddles,

I am very grateful for your explanation there is so much terminology to understand!!

Monica

Member

Re: Triple negative secondaries/ recurrences

Hi Monica, I work in the nursing profession and I've often seen letters written by doctors where a patient "denies " something. It simply means that you've answered "no " to a question ; it means nothing else, there is no underlying statement which may make you feel you've answered "no" but the doctor does not believe you hence he writes "denies". Don't dwell on it- there is no hidden meaning involved. 

Take care, Truddles xx

Member

Re: Triple negative secondaries/ recurrences

Hi Lulu,

Thankyou for your reply & I hope your treatment goes well. Saw GP yesterday & BP normal - at least something is!! He agreed that letter from onc. is lacking in detail & he noted the inaccuracies - I did not 'deny back pain' I have no back pain!! Luckily I have a good, communicative GP - he asked if I had been avoiding him as not needed to see him for 6 months!! 

I feel better in myself - could be down to chocolate!!

Hugs to you,

Monica

Member

Re: Triple negative secondaries/ recurrences

Hi Lu-Lu I hope you have good results from recent treatment to brain mets keeping fingers crossed for you.
I have just started my second cycle of capecitabine no trouble at all with the first so seems promising.I am having 1500mg x twice a day what is your dose going to be I believe it is worked out by weight and height.I hope all goes well with the start of your Cap perhaps we could compare our journeys as we are starting about the same time,by the way I only had 10days on and 10days off first time round to see if tolerated ok but this time 2 weeks on and 1 week of.
Best wishes to all having treatment Love Macie x x x
Member

Re: Triple negative secondaries/ recurrences

Hiya monica

I was originally diagnosed with lung in august. I went on a research trial but that never worked and a from start point of 20mm they grew to 35mm. I then went on taxotere and the Ugger grew to over 70mm. Was just getting ready to start on xeloda when i was diagnosed with brain mets three weeks ago.

Started whole brain rads last thur and finish them tomorrow. And will be starting the oral chemo tablets on friday.

Hope you are taking care of your self.

Love Lulu xxxxx

Member

Re: Triple negative secondaries/ recurrences

Hi Regine,

Just found this thread, fairly new to the forums. I posted earlier today on the Bone mets thread as onc. has just written it on letter to GP - but did not tell me last week where he thinks they are!! I was dx last October, 13 years after primary triple neg - mas, fec & rads. My GP spent the summer trying to find out what was causing fatigue & odd blood test results. Tumour in abdomen causing slight stress to right kidney.Done 8 cycles of capecitabine with sore hands & feet - but no blisters for over a month!! Now being changed to Paclitaxol in a few weeks as onc said disease had progressed, he was not very helpful as I left feeling I had been interogated as to why I was not on Denosumab.

I will see GP tomorrow for bp check, he has always been supportive. I will definitely keep an eye on this thread.

Monica

 

Member

Re: Triple negative secondaries/ recurrences

hi Caroline,
very sorry to hear you are here, too. this thread has gone a bit quiet compared to a few months ago, not sure where they are all hiding.

did you have chemo after your recurrence in 2012, too? which one?
How are you doing on gem/carbo? i had my first dose last Thurday and some nausea since, but nothing serious, and mainly exhaustion.
I cannot imagine how stressful the treatment must be when phobic of needles, too. i certainly dont like them, but even less since they have more and more issues finding good enough veins - so i gladly opted for a port. which - since the insertion last week - is looking very good compared to the first time - i was black and blue then - nothing at all to see this time.

Regine x
Member

Re: Triple negative secondaries/ recurrences

Hi Caroline and welcome to the BCC forums

Along with the support and shared experiences you will find here please feel free to call our helpliners on 0808 800 6000, lines are open weekdays 9-5 and Saturday 10-2 for practical and emotional support

You may find some of our other support services such as 'One to one support' and secondary 'Live chat' helpful and you can read more about these via the following link which also contains information about secondary breast cancer:

https://www.breastcancercare.org.uk/secondaries?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_ca...

Take care
Lucy BCC
Member

Re: Triple negative secondaries/ recurrences

Hi all
I was originally dx in 2009 with tnbc, had lumpectomy, FEC and 25 radio. Got on with life....i then had a local recurrence in dec 2012, followed by full mastectomy, reconstruction and 5 (I gave up) docetaxel, just before Christmas I was dx with lung mets, it has taken a while to get my head together, I fact I still don't think it is, I have just had my first round of gemcarbo, my phobia of needles is worse than ever but trying to manage the new drug without a line, at the moment I am feeling very negative about it all, hope I can find some positivity here, or at least some mutual support.
Caroline x
Member

Re: Triple negative secondaries/ recurrences

Hi,

I have been trawling through many pages of this threat to look for references of Internal Mammary nodes and Gemcitabine and Carboplatin chemo and on the last page I read ( as i started pages down Smiley Happy ) - I find both!! 

 

After my primary diagnosis in May 2011 ( TNBC, 4EC + 4Tax, Lumpectomy, full Anx clearance, 35radiotherapy), I was again diagnosed in Nov 2013 with a local recurrence in two lymphnodes. One interpectoral and the other one in the internal mammary lymphnodes. 

I had surgery on 2nd Dec 2013 to remove both.

The internal mammary node - had started growing into the rib and a piece had to be removed and was apparently the easier one. Unfortunately the one under the pectoral muscle had grown towards blood vessels / nerves and a nerv by my arm had to be cut. This was much harder and i get the impression - although they have removed everything visible, they were not happy about the margins.

 

Suze, I can imagine that a weird position of the node is difficult to remove. For me, i am glad its out. i was in pain before the op and the fact that it had started to invade into the bone was not going to be getting better soon. the operation however was also much more involved that i anticipated. 

Can i ask - how did they find this internal node? in my case it was only found on a PET CT scan, which was initiated due to the interpectoral lymphnode they found on the ultrasound! I was in discomfort for months, but they couldnt find anything ( u-sound, mammogram, feeling, etc), so it was always put down to longterm radio therapy pains.

 

Anyway, I am starting tomorrow, 9/1/14, ( today, i suppose now ) the first 3-week cycle gem/carbo combo. After reading the most recent posts, I am glad I decided not to go to work during this chemo - unlike last time - simply due to infection risk ( ta, Cressida!) !   

 

Rexi 

 

 

 

Member

Re: Loco-regional recurrence

Hi ladies

Saw ONC on wednesday ( lovely lovely man) went through everything with me and as I thought Chemo is my option Taxotere 6 sessions on a three week cycle.He did say he would like me to see a Thoracic Surgeon to just be certain if surgery is an option. He did not know this himself because of position in my chest , he also said if it was an option but I did not want to got through surgery, it was my choice and we would just bat on with the Chemo. He felt that as it was so long since my primary that was a good sign and other than this (imposter) I am a healthy person and in his words a "Youthful" 63 year old. Can't beat a bit of flattery lol. I just wish some of the postings on here were more positive or is it that these people are just getting on with LIVING... I don't know? Last time I had 8 sessions on FEC and coped quite well with that and continued to work. He also told me that things have come a long way since 2001 with new treatments etc. So I have to stay positive as I aint giving up yet!!!!!!

Hugs to all

Suze



Member

Re: Loco-regional recurrence

Hi Suze

I presume if you decline surgery or if they are unable to do surgery they maybe able give you radiotherapy if you havent already had it.... Not sure what past treatment you have had.... If not they may manage you as they do with women with mets and treat it with chemo instead....

Your onc is obviously the best person to discuss it with.

Good luck and do keep in touch

Luluxx
Member

Re: Loco-regional recurrence

Hi and thanks to everyone on this forum , you are all so inspirational. I have just been diagnosed with Loco-regional recurrence in Internal mammary Node, twelve and a half years after 1st diagnosis.I am waiting to see ONC to find out treatment plan. Consultant mentioned MAYBE chemo to shrink tumour with option for surgery? This terrifies me  as I am petrified of further surgery especially as it so close to main Vein. My worry is what will happen if I refuse surgery? Anyone have any idea, I know surgery would be the best outcome but as we all know it is no guarantee.

Suze0

Member

Re: Triple negative secondaries/ recurrences

Bumping this thread up for new lady Carol_13

Member

Re: Triple negative secondaries/ recurrences

Hi Sandra,

 

What a nightmare.  The jabs are often routinely offered to everyone having their first round of primary treatment, but they are eye wateringly expensive, so they are generally not routinely offered to anyone else.  Usually you have to "qualify" by having a lot of problems.

 

There is a temptation to think that the jabs will stop you getting infections.  I know to my cost that this is not true.  They do boost all your counts so you can "pass" the blood test, but, it my case it meant that blood tests that were taken to check if I had an infection were useless.  I had very high infection markers, but they were happy that these were caused by the jabs.  I did not have a temp until the last minute and they relied on that and carried on giving me the chemo.  I was in severe pain and lost the use of my arm but everyone was happy I did not have an infection.  I had seen my Onc, the chemo nurses, the lymphodema nurse, the  BCN, my surgeon, my GP and been to A&E.  No-one suspected infection.  They gave me morphine and told me it was rads damage and a frozen shoulder.  When my temp finally spiked it was very late in the day and I nearly died.  Everyone said it was all extremely unusual, but it did happen.  So I would be wary of thinking the jabs are the always the answer.

 

The other lady I know who had GemCarbo carried on without the jabs, she had a lot of delays and a few admissions, but she did finish the course.

 

Not sure this story is the kind of cheery thing you were looking for before your first GemCarbo!

 

Really wishing you well - do keep in touch.  I joined a chemo thread, even though I was the only one not having primary treatment.  It really was helpful.  I feel a bit of a fraud coming on here as I have no evidence of secondaries, so I don't usually join in.

 

xxx

Member

Re: Triple negative secondaries/ recurrences

TJ

Your onc has said the same as my onc in terms of recurrence.... When its still near the original site its a recurrence and only becomes mets when it spreads beyond the lymph nodes.....

However in terms of pathology any cancer in the lymph nodes is referred to metastasis.... As it has basically moved out of the breast but cancer in the LNs is still cureable.... Although didnt know they could operate on LNS near the collar bone.... When mine returned they were below the collar bone and thats why they could remove them but was quite tricky apparently because of a huge vessel close by.

Thats annoying about the rads too.... I have had rads to right breast, left breast and left clavicle, but not the right clavicle so that is one of the reasons i can join this trial.

Good luck all
Member

Re: Triple negative secondaries/ recurrences

Hi San, I have three affected lymphs just above collar bone but onc is calling it a recurrence rather than Stage 4. She also says surgery is an option after chemo. She seems confident it can be cured (she is not one to give false hope - quite the opposite, when she first felt neck lumps she said almost certainly will be other mets but luckily PET scan showed nothing else).

Lulu, my onc tried to get me on trials (I live in Oxford so quite a few going on locally) but as I've had radiotherapy to clavicle the damage that causes makes it impossible to measure effectiveness so no go unfortunately, I hope you get accepted.

TJ xx
Member

Re: Triple negative secondaries/ recurrences

Sandra

I see ou have it confirmed that cancer is the same as your primary.... Normally lymoh nodes in the clavicle are not considered as secondaries which is stage 4 but as stage 3..... Not operable but can be treated well with chemo.

Good luck with gem/carbo ladies.... I asked my onc about this regime and he doesnt tend do it but seems lots of other oncs do.


If anybody has just recently been diagnosed there s a new trial for TNBC called ENCHANT.... which using a new drug called ganetispib and has been showing really good results in TNBC.

The main criteria is you havent had any chemo or your mets yet.... So its good if you are newly diagnosed with stage 4.

Im seeing my onc on wed and hope to be recruited but would love to hear fom anybody else who is considering this drug.
Member

Re: Triple negative secondaries/ recurrences

Hi Teej

 

I have just found out that I have secondary of the lymp node apparently 1 got through even though I had been told I had clear margins... due to start GemCarbo Wednesday and like yourself was wondering/hoping for any tips as suffered through FEC x6 last round with low neuts in and out of hospital

 

Hugs and love

 

San xx

Member

Re: Triple negative secondaries/ recurrences

Hi Cressida

 

I have been trawling through the site hoping to find someone who has gone through the GemCarbo chemo. Unfortunately I have just been diagnosed with secondary breast cancer of the lymph nodes- 1 node affected even though I had been told I had clear margins :-( I am due to start Gemcarbo this Wednesday and I have tried reading up on it- I had FEC x6 and it didnt work- was just about to start radiotheraphy when they found the lump on my collarbone-I also suffered badly with low blood counts and ended up in hospital many times but what Im concerned about is that my onc has said that I wont need the injections??.. I have mentioned this to my macmillian nurse and she is going to chase it up for me- considering Ive only just been told today what is exactly wrong with me...by the way this secondary was a blood blister on 1st examination by onc- then my liver had lesions ( which I didnt- liver clear) so now shes telling me that it can be "controlled" by this new chemo

 

So the news has devastated the family and have been through 2 weeks of hell- up to now I feel as they have got everything wrong with me- lump found after surgery was scar tissue ( I had Grade 3 IDC stage 3- WLE & SNB)- was told I was clear etc- sorry just having a rant cos I vowed I wouldnt google any information and as it is I cant find any info directly aimed at what Ive got so have emailed the mods on here

 

Please keep in touch as Ive gone from being given a few months etc to god knows what timescale now

 

Love n Hugs

 

Sandra xx

Member

Re: Triple negative secondaries/ recurrences

The simple answer to that Teej, is that I don't know yet.  

 

I had GemCarbo under slightly unusual circumstances; neoadjuvant FEC-T did not work at all and my (already very large) TN lump just grew.  My onc tried to tailor the treatment (this is the whole point of neoadjuvant, after all) by first increasing the Tax (yuech) and then starting GemCarbo.  But we decided on Mx before GemCarbo, so there is no way of monitoring my response.  I had a clear CT scan when my Onc stopped the GemCarbo (more likely to kill me than the cancer, due to massive infection).  Now I am just crossing my fingers.  Seeing Onc next month to decide what to do next, but probably just wait and see. 

 

Regarding low blood counts - I asked for and got the immune boosting jabs, but it turned out to have been a bad idea, as the blood count was artificially boosted by the jab and then they misdiagnosed an actual real and nasty infection until it was too late to treat it.  I know another lady had similar problems with endless delays due to blood count problems.  Maybe you could have the jabs, but be very careful of actual infections.

 

The mouth problems I found I could control a bit by scraping my tongue and using Corsodyl all the time.  It stains your teeth over time, but that was the least of my worries.  Nothing can make food tasty though.

 

Hope you do better this time, I think the worst sfx were from the first dose.

 

xxxx

Member

Re: Triple negative secondaries/ recurrences

Thanks Cressida!  I had first dose and felt pretty wretched, very nauseous for nearly a week, although nowhere near as bad as FEC.  But my blood counts were too poor for the second dose of Gemcitabine on Day 8, then the following week my mouth almost disintegrated into sores/ulcers.!  I'm due the second cycle this Thurs (gave up on the day 8 dose).   Onc is reducing dose slightly and giving me more anti-sickness meds.  I can't see how my white count will ever be good enough for the day 8 dose?!  

 

I'm having another portocath fitted tomorrow - it looks hideous but no trouble and makes it so much easier, I hated having canula fitted - still got a bruise from three weeks ago.    Was Gem Carbo effective successful treatment for you?

Member

Re: Triple negative secondaries/ recurrences

Oooh.  I forgot; it doesn't make your hair fall out either.

Member

Re: Triple negative secondaries/ recurrences

Hi Teej,

 

I had GemCarbo.  When I posted on BCC last year to ask about it I didn't get a single reply, so when I saw your post I thought I had better jump in.    It was definitely easier than FEC-T.  It made me feel a bit sick (though I was never actually sick) and I had dodgy tummy (Omeprazole may help).  It is delivered in 2 stages usually - Gem and Carbo in week 1, then just Gem in week 2, then week 3 off.  

 

I found that the sfx kicked in a few days after week one and lasted pretty much until the day I had week 2, but week 2 (just Gem) didn't make them any worse.  Got to feel fairly well, apart from tired, in week 3. 

 

Also not so harsh on veins as FEC-T, so I managed without the Hickman line that I had just had taken out.  Did start to hurt as time went on though, but I just didn't want the line put back in.

 

I think the main problem for me, was that I was knackered and worn down after a year of cancer treatment and it did knock out my immune system, so my blood count was always bad (causing delays) and eventually I got a nasty infection so that I didn't actually finish the full course of GemCarbo.  So, I guess the message there is be careful of possible infections.

 

Good luck, xxx

Member

Re: Triple negative secondaries/ recurrences

Morning LuLu

 

Im yet to find out what my actual secondary is.. cos my onc is debating whether it is secondary or a new primary on my breast.. but the path lab are stating its secondary and its lymph node type etc..not really had much conversation with her as she told me I had got a few months at least :-((.. but this is one lady who is not ready to go yet as they have got everything wrong just lately!!.....she is starting me on gemcarbo chemo on wednesday and she told me it will control etc......just dont know whether im coming or going at the moment... as this secondary appeared halfway through me having FEC .. and I was told it was a blood blister!!.. funny looking one if u ask me..

Keep in touch cos at the moment I really dont know what thread to use..lol

 

Much love

 

San x

Member

Re: Triple negative secondaries/ recurrences

Hiya Teej

Iv not had experience of GemCarbo, but then i never had FEC-T either.... My chemo regimes were E-CMF for primary TNBC and TaxCarbo for chest wall recurrence... I found the Tax really really hard going.... The Carbo can cause nausea and low neuts but never had any of those effects.

Good luck and hope you get on ok with the chemo.

Lulu xx
Member

Re: Triple negative secondaries/ recurrences

I was hoping to not join your club but here I am almost exactly a year since first diagnosis.  I start GemCarbo chemo for local recurrence in neck lymphs.  Onc says this should be easier than FEC-T (which completely floored me) but any tips/comments gratefully received.  

Thanks!

TJ x

Member

Re: Triple negative secondaries/ recurrences

Hi Lulu34

 

I'm sorry to read of your recent diagnosis.  I've added here the link to the Secondary Breast Cancer page which gives details of support groups being run by BCC and also specific information which you may find useful.  To go to the page just click on the link:-

 

http://www.breastcancercare.org.uk/secondaries?utm_source=forum&utm_medium=promo_box&utm_campaign=se...

 

I hope you find this helpful.

 

Best wishes Sam, BCC Facilitator

Member

Re: Triple negative secondaries/ recurrences

Not been on this thread for a while and unfortunately im not just back to say hiya

Used the thread frequently since 2011 as i was diagnosed ER pos BC in 2006, then i got TNBC in 2009 and a TNBC recurrence in 2011.

Well I was diagnosed 2 days ago with lung mets.... Well actually it should be lung met.... A single 2.3cm lesion in upper lobe of right lung with 3 mediastinal lymph nodes. Probably going on TNT trial but my case is being discussed at Breast and lung MDMs next week and seeing onc on Monday week with hopefully a set plan of action.... They want to do lung biopsy to see if its mets from the ER+ or TNBC..... Onc (and me) is sure its TNBC hence him wanting me to go on the triple neg trial.

Still in a bit of shock and can't quite believe the bugger has come back a 4 th time and that this time is never gonna go away.... But in usual Lulu style im getting ready to kick ass once again.

So hi again ladies of the TNBC mets and recurrences thread.

Love and hugs Lulu xxx
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies
Long time since I wrote on this site.
Triple Neg since 09, spread into sternum, lungs, lymph nodes , spine n shoulder too.
Been on chemos over the last few years.
Currently on Abraxane n Zometa too
I will be checking in daily now, this site seems much easier to use, thank goodness Smiley Happy)
Member

Re: Triple negative secondaries/ recurrences

Hi Clare I have only just found my way to this thread
Your case sounds very similar to my own.I was first dx in 2007 with small lump in left breast I had WLE and rads and it was ER+ 5/8. In 2012 dx with secondaries to the sternum bone and soft tissue mass to chest wall and now it is weakly pos 2/8 so classed as TN so it would seem that receptors can change all the time.
I wish you well with your treatment
Linda x
Member

Re: Triple negative secondaries/ recurrences

hello everyone found out 3 weeks ago i have triple negative secondaries in my liver, lung, nodes in my neck and in the breast bone aso have a mass on my chest wall but there not sure what that is at the moment, i would just like to ask a question my first primary and 1st recurrance was ER+ but with this recurrance they say it is triple negative so can cancer cells change or would this be classed as a new cancer thanks claire xx
Member

Re: Triple negative secondaries/ recurrences

Hi moondog I was told negative but just found out in was progestrone positive. So double negative ?? Don't know what difference this makes am I still higher risk like triple negative ? I've never been offered any drugs 3 n half years after diagnosis lumpectomy auxiliary clearance chemo n rads was told aggressive but very interested in the link about copper is it available i don't get to see oncologist only gp now so don't know what power they would have rozita x
Member

Re: Triple negative secondaries/ recurrences

Would be good to start this thread up again. I'm in desperate need of support.initial diagnosis jan 2007. TN, lumpectomy & radiotherapy only. Recovered great and got onwith life then Diagnosed with bone mets 3 yrs ago then last April had secondaries in lungs and ? tiny spot in liver. Had months of chemo then had scan in December 20012, liver clear lungs only tiny mets,bones stable. All good, scan in April even better! So happy!
Then scan last week showed although lungs ok two 2cm mets have grown on liver. So shocked as feel better than ever. Starting on oral chemo Xeloda on 7th aug. so fed up and scared. Is this a downward spiral?would be good to chat to ladies in similar situation. Much love to you all who are struggling with this awful disease. X x
Member

Re: Triple negative secondaries/ recurrences

Thanks Moondog! X
Member

Re: Triple negative secondaries/ recurrences

Just bumpIng this for some of the new ladies with TNBC secondaries or recurrence
Member

Re: Triple negative secondaries/ recurrences

Hello ladies, it's been a long time since i've posted on the forum, so i'll give a quick update. Stage IV, triple neg diagnosed with secondaries in May last year. Had Carboplatin which nuked the cancer and i've been well since October 2012. Hi to you all. Just thought i'd drop by because there's a promising new TN treatment called copper depletion therapy, i've asked thew girls at BCC about it and will raise it my next onc appointment, but i thought this article may make you smile, 5 1/2 years!! http://weill.cornell.edu/news/releases/wcmc/wcmc_2013/02_13_13.shtml
Member

Re: Triple negative secondaries/ recurrences

Just got into this thread. How are you doing ? I wish you well. I think we are all very different in the way we respond to chemo and radio. In 18 months I have had 3 operations chemo twice radio twice. TNBC first time Grade 3 Stage 3. Chemo X6 FEC, followed by radio for 3 weeks. 5weeks after treatment upper chest recurrence Metaplastic TNBC grade3 Stage 3. Operation Chemo Docetaxel and Carboplatin X4, radio for 4 weeks. Nearly 4 months later recurrence under left arm in lymph gland and on chest both areas had radio previously. Metaplastic TNBC. Had operation and 15 lymph nodes removed. Dr thinks chemo and radio have not helped. I am positive and not sure what to do. I just wish there was a targeted therapy for TNBC. Mentally I am coping but physically it is hard.

Keep positive and take one day at a time. Today is so important and is good.

Best wishes
Member

Re: Triple negative secondaries/ recurrences

Sorry, Di,
I can't give you any more advice either but bumping again.
Perhaps worth phoning the Helpline? I don't know if a second opinion is called for here or not. Some people are much more informed on trials etc for TN than I am so hope bumping this again may help you.
(The place the nodes are in is called the mediastinum - it is just behind the sternum which is why you heard that-don't know why it's called that)
Hope you get abetter answer
Lavender
xx
Member

Re: Triple negative secondaries/ recurrences

Di,sorry i cant give you advice. Just bumping this up for you to the top of the list
Member

Re: Triple negative secondaries/ recurrences

Hi folks, I need some help and guidance please. My history is this: dx Dec 11; right mx Jan 12; 6 x EC chemo finished in July, 15 x rads finished in September. As I've TNBC I was going to be on a drug trial (Denosunab) so had a MRI scan which showed up enlarged lymph nodes in the mediasternum (?). I was sensitive to the chemo and rads and I thought they'd worked well. Oncologist said to have a scan every three months. Had this last week and got my results today. Total bombshell!!! The nodes haven't cleared and I have to have more treatment (what it is I'm not sure yet). It was when he said "incurable" was the horrible thing.
Where do I go from here?
Newc43 (Di)
Member

Re: Triple negative secondaries/ recurrences

That is strange, Laura.
Good to hear from you and good to hear you are enjoying a break
Love from
Lavender xx
Member

Re: Triple negative secondaries/ recurrences

hi all where is everyone well a small update i was tested in sept11 for prostrate cancer drug which turned out negitive then last month the trial team done another test that was positive work that one out on a non living tissue with no treatment etc weird or wat even trial plp have no idea why one theory is dif parts of the tissue do dif readings how strange so the girls that have been tested neg get it done again im on a 3 wk break at moe gd luck all xx
Member

Re: Triple negative secondaries/ recurrences

hi all where is everyone well a small update i was tested in sept11 for prostrate cancer drug which turned out negitive then last month the trial team done another test that was positive work that one out on a non living tissue with no treatment etc weird or wat even trial plp have no idea why one theory is dif parts of the tissue do dif readings how strange so the girls that have been tested neg get it done again im on a 3 wk break at moe gd luck all xx
Member

Re: Triple negative secondaries/ recurrences

Laura, I have been so wrapped up in my pins and needles that Ihavent even said I don't know about those trials.
Any point in starting a new thread with them in the title or asking the Helpline?
SEnding Christmas Best wishes to you and everyone on this thread especially those of you with young families, hope you have the energy for it all and have those camera batteries charged!
Lavender
xxx
Member

Re: Triple negative secondaries/ recurrences

Lavender Lassie, One of the tests my physiotherapist tried to see if it was Carpel Tunnel or not, was for me to push hard with my back of my hands pushed together, fingers pointing downwards for 3/4mintutes and if it began to have pins and needles, he said it was Carpel Tunnel. I have the same pain area as you. With pain from shoulder to elbow and pins and needles/numbness from elbow to fingertips. Did you have a Brachial Plexus MRI Scan? I did and found ti extremely uncomfortable becasue of my pain described above and the fact that I had pain in my neck and a broken rib, and was expected to remain absolutely still. My question to you now is....if you did have a B P Scan....is ....."did anyone speak to you when you were having the scan?". Because usually they tell you that you are doing fine and the next part of the scan will take 3 minutes etc. I was on the outdoor mobile unit for this scan plus a full spinal scan so must have been on my back for 40 minutes approx. Yet not one word was uttered and I did not know how much longer I had to be int he machine or how much time had passed. I was very upset when the scan was finally over. Just wondered how it was for you. I did not like the part of the machine that went across my chest. They had not told me about this beforehand. I had gone to the scan on my own, early evening, and thought I would be okay in the scanner as I used to be really scared and had overcome my fears. But this scan was not very nice at all. Val
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies
Thanks Val and Lavender for posting today hope your pain eases for you both. X
laura - are you still on xeloda?
Ive just completed my 2 nd course of of xeloda, been ok mainly.
Still have very painful shoulder tho, thought it was all connected to infection around hicman line.

Hi to all ladies, Lulu, Christine, Sadie, and all .
wishing you all a merry Christmas ,
and all the best for the new year.
Sandra xxx