Don't know how to add a link but just read an article in the Daily Mail re discovery in Cambridge of a gene that is impacting triple negative in mice. Not testing on women yet but that will be the next step, I know this is very early stage research but sounds like it could be a positive step?
Start radiotherapy for newly discovered brain mets on Monday (thought I was having stroke, fraid I wasn't!) Put on steroids which have been great and have had fantastic care from the staff at my hospital.
Sending hugs and best wishes to all us Triple negative ladies.
Please let me know when you reach a decision and also post your progress
Luv n hugs Suexxx
Nor sure what you are asking here, but I can tell you about the Stereotactiv Radiosurgery. I have had it done twice as a day patient I was at the hospital approx 7 hours but the treatment was only between 20 and 40 mins. I must admit I found it much less invasive than surgery, all tho this was not an option for me. I am very confused regarding Capecitabine as someone on here has said that it breaks thro the Blood Brain barrier but my Onc told me quite categorically that this was not the case?. By the way I did not have any side effects from the Stereotactic procedure. Please let me know what decision you reach and also your progess lots of love ang hugs
Ps just off for my 3 weekly visit to see Onc grr. x
Lovely to hear from you again Lulu and so pleased you are feeling better now. You are such a tonic! I wish you every happiness as you were such a support to me during my early days of diagnosis
Love Sue x
Hi Maxine, welcome to the site I am quite new on here but you will get loads of support from all the lovely "girls" on here. Have you posted anything yet Love n hugs Sue xxx
Hi Lulu well like me you have certainly been through the mill!!! I am not sure if you are having Stereotactic Radiosurgery for brain mets or lung? It was Stereotactic procedure that I had for brain mets but I saw the Nurosurgeon on Monday and on the Thursday I had the procedure done. Anyway good luck and pease let us all know how you get on
Luv and best wishes for 2015
I can fully understand your decision re the operation. I was on the table for 9hrs with the Thoracis team and the Plastic Surgeon. Like you I was terrified of the surgery I had the top section of my sternum removed and replaced by mesh cage and both clavicles were cut back and several ribs. After the op last January I was treated for psycriatic problems, hallucinations and a fear of everything etc until March when I had an MRI scan on my brain and a tumour was found. So it was goodbye to the Psychiarist and hello to Gamma Knife procedure. I continued to recover until Sept when results of scans showed traces of cancer in my liver and 3 vetabrae and I was placed on Capecitabine immediately. I then had a further MRI on brain, fortunately instigated by my OH and a small tumour was found so once again I had Gamma Knife treatment and now await next scans after 6 cycles of chemo..I have to say the op was horrendous and I still have se's my whole chest feels deformed and I can feel bones (ribs) moving when I am in certain positions. My Onc still says it was my best option so who knows
Anyway Macie I would like to wish you and and all the lovely ladies on his site a Very Happy New Year, and keep on fighting.
Love n hugs Sue xxx
Hi Lulu I know you had chest wall recurrence same as me ......did you have surgery.
Luv n hugs Sue xx
Hi Helen do you know how long you will be on Cap? I think I will have scans after my 6th cycle and then we will see what is happening
Luv n hugs Sue xxx
Hi lovely ladies hope you all managed to have a peaceful Christmas. I had lovely time with my special OH and family. Now looking forward to N.Years eve, when we will be celebrating at a local hotel with family and friends. I am sure this topic will appear on other threads but just wanted to say I have just finished my 5th cycel of Capecitabine and fortunately without too many se's, I take 1 spoonful of Manuka 15+ honey daily and swear by it, does anyone else feel the same.
Wishing you all a peaceful New Year....keep strong
Luv n hugs to all Bazcasxxxxxx
As you say 'daft as brushes'. I refer to my tumour as 'the alien in my abdomen'. The last Consultant overseeing me on the ward asked if I had more defined pain from the 'alien' or laparotomy scar!! I refer to the leaking ascites as 'alien juice' although it was frightening when they turned me on my side the day after op and bed got soaked.
There were some dark days when I thought it had got me, especially when my heart went into AF & was on hourly obs, and frequent heart scans as phosphate level was very low. Drinking fizzy medication was horrific as I had acid reflux at same time - connected with having the stoma. Eventually they did it by infusions.
I now have a very naughty alien!!
Thank you for your replies this sounds like just the sort of support I need.... please tell me how to join the cyber Christmas party.
Many hugs to all
Just thought I would introduce myself to to this site. I was diagnosed wih stage 3 ER positive BC in feb 2001 and had a mastectomy followed by 8 sessions of FEC and then Radiotheraoy for 4 weeks. I then went on Tamoxifen for 5 years followed by Femara for a further 2 years. In Sept 2013 I was mis-diagnosed with chest wall Lymphedema which in Oct 2103 it turned out to be a local recurrence which had morphed into TNBC....hello!! I had chest wall resection and reconstruction in Jan 2014 which is massive surgery and mentally I never recovered from it. In Feb 2014 I was admitted to a Macmillan Unit in Sheffield where I live and in March they sent me for an MRI Brain Scan which showed up a tumour and I was fortunate to be given Gamma Knife treatment. Afer that I slowly came back to my normal self mentally and was discharged in the middle of April. In July we managed to get to Ibiza for 11nights and had a wonderful holiday. Two days after returning home I saw Onc for some scan results and was told there are traces of cancer in 3 vertabrae and in my liver so I was started on Capecitabine immediately, then prompted by my wonderful partner Onc arranged for a further MRI Brain scan and low and behold another small tumour had appeared. So in November I once again had the Gamma Knife procedure and wait to see if the Chemo is working apparently Chemo does not work on the brain as there is a barrier around it for protection. Anyway after a very CRAP year I remain strong and positive and am learning to live with secondary BC. It is very insperational to read other ladies story on this site. Keep up the fight girls and don't let cancer win. Sorry for long scroll but even that has made me feel better lol
Great news Monica! Just shows how things have improved. It will be good to have a break as I think it will give your body time to recover from the drugs. Then you are fresh to start again if necessary. Have a lovely holiday. Xx
I saw my nice Onc. on Monday & he was delighted to tell me that the tumour markers have remained at 600, we know there is a long way to go but as I feel & look well I won't be going back on Cap. just yet. He said to return in 6 weeks then asked if I was having a holiday - got a break planned in the Lake District at that time so he will see me in 5 weeks. To have CT scan prior to this.
I have been enjoying myself at various celebrations - a 50th anniversary & the following day a 60th anniversary; been to see Dawn French in her own show and been out here & there visiting museums & friends.
Hugs to all, Monica
Hi everyone, so glad there is a triple negative thread on here, although it took me a while to find it!
I just wondered if there is any ongoing treatment we triple negatives can have to try and 'keep things at bay'? I mean in the way others have herceptin for years. Or is it just chemo/radiotherapy then wait and see? Sorry if this is a very naïve question -I'm still quite new to this. xx
My appt went very well yesterday, he began by asking how I felt & any problems - just my expanding waistline. I do NOT have bone mets. As said last October I have a 'condition' in the bone with a long name possibly due to the severe sepsis I had 3 years ago. The tumour markers are down to 600 - started at 1,800 last October. He is in no rush to resume chemo & will wait until they go up, then probably go back on Cap.
If fluid in abdomen increases they will drain it.See him again in 6 - 8 weeks & meanwhile to enjoy myself!!
Thank you to all for your support,
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.