oops sorry Jane I didnt look at the forum heading I will delete me!
Hi Everyone
Would be interested to know more about this PARP drug/treatment. Where does this information come from? As I am Triple Neg I only have the option of chemo (at least that is what the Oncs tell me). I am in touch with a Professor Dagleish, or at least his secretary, at St Georges Hospital, Tooting. This is in case the chemo fails to work next time. He is involved in research into cloning immune cells but cannot carry it out in UK - he refers people to Germany. Apparently, it “is all quite expensive”. And stressful I should imagine. My husband wants to set up an appointment now with the Prof so we are ready to go if next chemo fails. I feel that why should I have to go to Germany and pay a lot for the privilege…? but I may well change my mind if that becomes my only option! I think my brain is protecting me - although I can talk rationally to people about possibly dying in the near future I do not actually believe I will, or rather I cannot actually believe I will.
However, I have been thinking about my cancer the last few days because I feel unwell. I hope it is a flu type bug that my son had at the weekend - his bug lasted about 12 hours (oh, to be 8 years old) but mine has gone on for a few days. One thing I do not like is that the pain has increased, both in my left breast (site of original cancer) and in and around my sternum (site of secondary cancer). and a pressure on my throat - that was there before the flu. Has anyone else had secondaries to lymph nodes in chest/sternum and had this feeling of pressure? My cancer always shows up as pain - lucky in a way because I pick up on it quite quickly.
Grateful for your thoughts
Ena x
PARP inhibitors are a new type of drug, not chemtherpay, which affect the genetic make up of cancer cells. Research suggests that these drugs may be particularly useful in BRCA1 and BRCA2 cancers, but also that they may be effective for other triple negative cancers (most BRCA1 cancers are triple negative but not all triple negatives are BRCA1.)
These driugs are very new and there are a lot of trials going on…mainly at Phase 1…i.e very ealry experimental stage. I had a second opnion at the Marsden in the summer and was told that I could go back later for a discussion about a possible phase 1 trial…I will probably do this as I am now preety much on my last chem option. But I know that phase 1 trials are a long shot so won’t necessarily do a trial even if eligible.
o
Ena I have nodes in my chest wall and have heard about pressure on throat and worry about it myself. I smetimes think I have difficulties swallowing. I have had damaage to my vocal chords from the tumours. Hope your symptoms turn out to be flu ones. Do mention the pressure feeling to your oncologist…
Jane
Hi Ena
I share some of your symptoms. I was originally diagnosed in March 07, reccurance diagnosed in Oct this year. I have the pressure on my throat thing, it started just after my 1st chemo and now 2nd one done and it’s still there, which is a real worry. Was orginally scannewd as clear post removing the regional reccurrance in nodes near orginal site, but within weeks the disease had moved out into my lymph system and is now affecting shoulder and clavical nodes.
Right I am now doing carboplatin on it’s own but don’t feel like it’s working, so waiting to see if the 3rd dose helps with this awful pressing on my throat, if not they will add gem to it. On one hand I will know when (if) the chemo works, on the other it’s an awful sensation isn’t it.
Am interested in learning about the treatment you talk about, will message you privately as not sure if clogging up this thread is the right etiquette or not (sorry guys trying to learn) talking of which need to post another note with a seperate question.
Best wishes
Nikki
Hi Jane and all, I wanted to check if I am ok to post on this thread / under this heading, as do not technically have secondaries (yet) either. With a spreading local recurrance (thanks to you Jane I am learning about where my disease falls and where it doesn’t, have to say, edges are still blurry!)
I certainly don’t want to upset anyone by mis-posting, so if you can let me know I would be grateful
Thanks
Nikki
Hi Nikki post away…I post in the secondraies forum cause I think my regional recurrence, being incurable, puts me in exactly the same position as people with secondaries…
Far far too little which is accurate is written about the blurry edges around loco, regional and metastatic recurrences.
Bt the way carboplatin didin’t work for me. Had it with gemzar…tumours stayed stable while I was on it for 6 cycles but grew quickly once I was off it.
Jane
I’ve just heard (thanks to Christine MH) that the poster presentation on PARP inhibitors at San Antonio was only about the safety of the durg not its efficacy. In this trial one arm received PARP inhibitor plus chemo and one arm chemotherapy alone…and no differences in side effects. Results on efficacy (ie does it work?) not due unitl mid 2009. Hey, ho cancer research runs slow.
This is the link:
Jane
Hi Jane, thanks on both counts.
It’s frustrating when things take so long in our circumstances. Here’s hoping something comes of it and it can help us all, in time.
Nikki
We have to hang on until they catch us up! We wish!
gill
Hi Gill, I didn’t mean it like that sorry, I do understand things are very different for all of us and we can’t ‘hang on’ or anything like that. Sorry if I offended.
Nikki
no offence - not at all
I didn’t mean you to think you had caused any!
what a mess
I just meant we have to hang in there!
go well
best wishes
gill
If people without secondaries can’t post on here, do people with secondaries not post on the other forums? I thoought this site was free access?
I think it is free access - we all have something to contribute. I hope we won’t get precious - I would rather not be interested in secondaries!
Best wishes to us all
gill
Irina I think that was my fault I mistook this for the general triple neg thread and wondered where the post I thought I’d made was.Jane explained in a pm and I removed most of my post leaving a bit of confusion.I have nothing but love and good wishes to offer a secondaries forum and I certainly dont mind not posting on it.Vx
Oh dear, sorry Gill I misunderstood. It is so easy with the written word isn’ it!! Just goes to show that it’s true what they say, 80% of what you say is not contained in the words! So when you take away all the body language, tone etc it can be hard.
So, here’s to us all hanging in there!!! 
Nikki
Here is a question for anyone on this thread - are brca2 cancers likely to be triple negatove?
cathyx
I found this quote from the American Journal of Clinical Oncology Sept 2008
“Results: Of the 491 patients with identified breast cancers, 391 patients were BRCA negative, and 86 patients were BRCA positive. Triple-negative breast cancer (ie, those with negative estrogen receptor, progesterone receptor, and HER-2/neu status) was diagnosed in 57.1% of the BRCA1-positive patients, 23.3% of the BRCA2-positive patients, and 13.8% of the BRCA-negative patients. BRCA1 mutation carriers had higher nuclear grade tumors than the other two groups (P < .001). Of the triple-negative cancer patients, BRCA2 mutation carriers were older when diagnosed than BRCA1 mutation carriers and noncarriers (P < .01).”
You can find the whole text by googling. But this would seem to suggest that some triple negs are carry the brca2 gene.
dawnhc
thanks dawn thats interesting, I have a suspicion that my cancer is BRCA2, and it sounds like being ER weakly positive does not exclude that… It does sound like triple negative is a high proportion of brca1 and 2 I read this thread with interest as despite ER + status, hormonals look to be useless for me
.
Cathy
Yes in a nutsehll most BRCA1 and BRCA2 cancers are thought to be triple negative, but most triple negative cancers are not BRCA1 and BRCA2. I think (and have read it somewhere too so not just anecodotal me!) that there may be other genetic breast cancers which are triple negative but the genes haven’t been discovered yet. I think that about myself…purely anecdotally…cause my dad died of prostate cancer and there are a couple of women a generation back on his side of the family who died prematurely of brain tumours.
Jane
Hi
When i was dx they were convinced I was BRCA1 due to my family history - but it came back negative!! I am now part of a new investigation at the Cancer Research which are looking for/at mutated BRCA1 & 2 genes and other genes which have not get been disclovered. Unfortunately they won’t allow any of the standard preventative surgery etc until they confirm it is defintely genetic. Whilst this is of little benefit for me it would be of use to other relatives that may well be at risk. Sometimes I think it would be better to work on the premise if it looks like a fish smells like a fish it probably is a fish so lets treat it like one
Regards
Helen