Hi all,
I am interested to read of how many of you have had rads to chest, necks, backs etc.I have skin lesions, neck and chest nodes and I suspect “something” is going on on my left side / back. I asked my onc about rads a while ago, but she said it wouldn’t help. I was wondering if those of you that have had rads could give me some info? My onc seemed to imply the only thing that might help control my cancer is chemo.
Thanks, Sandra x
Hi Sandra!
Yes, I’ve had rads twice. First lot for primary bc - usual places (June 08). Secondly - Aug/Sept 10 underarm, collarbone and neck - some seemed to hit the back of my arm and back too. Some minimal lung damage Nov.10, now cleared up. Definitely had it twice to collarbone area. I would ask again if I were you. ( Seek a 2nd opinion maybe?)
all the best, Sarahxx
Hi sandra
I didnt have rads for my primary but had intensive rads for the skin lesions/ mets. It was a really large field from cleavage to mid back and rrom waist to armpit and I was burned to a crisp afterwards. But the rash did clear up (and it was really bad). BUT I hve4 some pretty sinister lumps already in my scarline and although they havent been biopsied, Im certain they are tumours. Im just praying the chemo kicks in soon- I had my 2nd carbo yesterday and will be scanned after round 3. Can I ask where your skin lesions are?
I have also asked about rads to collarbone seeing my nodes are active there. My onc wants to hold fire for now and maybe use that option later if they become very swollen and painful. Will see how chemo goes and then ask again.
Definately ask your onc about rads as it can be really effctive.
Hope you are feling ok and getting stronger every day 
x
Hi to everyone else will post again tomorrow.
Love Tina x
Just want to correct two comments made by Margit concerning Cyberknife (not to be nasty, but because I’m worried about Margit getting the wrong info and treatment that could be better).
(1) Cyberknife is not only available in the private sector - Mount Vernon NHS Hospital have been accepting NHS patients for Cyberknife since November 2010. Also The Royal Marsden, and St. James will start accepting patients later this year (Derriford Hospital in Plymouth are also planning to buy Cyberknife).
(2) Cyberknife is not limited to treating brain and lung tumours. Cyberknife can treat tumours anywhere in the body apart from the stomach.
Maybe you could ask to be referred for a second opinion to Mount Vernon Cancer Centre, because if you have fewer than five tumours, and they are under 3cm big, you could be a candidate for Cyberknife - and surely it would be better to receive curative treatment than palliative.
Hi lemongrove - very interested to read your comments. I am in fact under an Oncologist at Mount Vernon Hospital and often see him there. It was he would told me who they are treating with Cyberknife because I especially asked him about me. I like you think it is better to treat this disease while the tumors are small but unless mine are too big to treat he did not think this treatment was appropriate for me.
I am very mindful of this treatment and will continue to ask my Onc about it from time to time. At the moment he thinks it is more appropriate for me to have radiotherapy, bone strengthening treatment and more chemo. Thanks anyway for thinking of me.
Love Margaret
Hi everyone
just a quick post to say hello + to see how everyone is doing? Hope you are all as well as can be?
I’m feeling a bit queasy + very tired after this wk’s chemo. I think it’s mainly to do with the fact I’ve reduced my steroid dose by half because I couldn’t stand the jittery s.e’s + sleeplessness. Onc agreed I should half the dose + wean off gradually, as I really ‘crashed’ last cycle when I came off them. I’ve also gained another 5lbs without trying so yet another reason to ease off the steroids 
can’t feel any difference as yet with the lumps + bumps early days I know but it’d be nice + reassuring to feel things shrinking by this stage…
Hoping to get marsden appt sorted this wk+ planning on doing more research into European parp trials…
Love to you all
tina xx
Hi Ladies – A sad day yesterday, my CT shows metastesised cancer in my lungs now. (Initial BC in 2009, spinal met end of 2010) so feeling fairly poor. I am being pro active and looking at cyberknife treatment and the Triple neg trial(carboplatin vs docetaxel) – at the moment I feel a bit bewildered. My onc. is also applying for funding for some other sort of chemo (sorry to be vague, I could not take it all in yesterday). But which chemo did you all go for and how did you choose? It’s a mine field and you are trying to make decisions about treatments you know nothing about. This chemo HAS to work and slow this process down – 2 lovely children, fab husband and great family / friends and we are all in bits. I do not like the thought of it not working and going through all that hell again for nothing (TAC Feb – June 2009). I need …… we all need ……………the best chance to see many many more Christmases and summer holidays. Any help / advice / support very much appreciated from you all. Thank you,
Sadie Xx
Hi sadie
welcome to the thread but so sorry u have had to join us. It is very scary being dx with secondaries isn’t it- especially triple neg given our limited treatment options hopefully your mets have been found early + chemo will halt progression for u.
I am currently on carboplatin but am not part of the TNT trial- I wasn’t eligible as I had docetaxel last summer + so cudnt have chanced being given the same again. I’ve had my 2nd infusion + it hasn’t been too bad. Much easier than the fec-tax I did last year. I wasn’t given a choice of chemo to be honest- what options have they given you? Maybe it would be worth going to the marsden for a 2nd opinion before you proceed?
Have you had genetic testing done? If you are brca positive you may also be able to access parp inhibitor trials? I’m negative but am looking at trial in europe that I could maybe access.
Keep us posted + pm me if u want any time
ladies hope the rest of you are doing ok
tina xx
Hi Tina – Thank you for your welcome. So, have you had three lots of chemo? Glad the carboplatins are going ok. That is good news in amongst all this *****!!! They are suggesting Avastin and I’m trying to research it as fast as I can. The Marsden are on the case (saw a Prof there last Autumn before spinal surgery and they are looking at my CT scans of the lungs now)! I have had genetic testing, and I’m also negative. So, we have a lot in common. Can you keep me posted about the European trial, need all the info I can to keep this away as long as possible.
Thank you (ps you have a lovely baby) Sadie xx
Hi ladies
Just checking in to see how everyone is doing? Im just getting over my 2nd chemo and am feeling quite well. I am also delighted to report that I can feel some significant shrinkage in my scarline lumps :)))) I touch wood as I type this as I am only going off self examination but the lumps were so big and hard and they defo feel smaller in the last few days so Im feeling reassured that the carboplatin must be doing something right!! The swelling at my collarbone also feels less prominent I certainly deserve some good luck and so Im praying my instincts are right. I am going to manchester tomorrow with my hubby and we will have a shop and a few drinks and have booked into a lovey hotel dinner, b+b so we are really looking forward to that. My mum is having daniel for us…
I have started getting things together for my memory box for daniel. I am naturally hoping it wont be needed for a long time yet but I feel its best to be prepared and it wll be easier to do now rather than leaving it until a time when it ‘needs’ doing.
Thinking of you all- try to upate us and lets keep this thread alive
Tina xx
Hi Ladies – nice to ‘meet’ you all.
Tina, that sounds like a really nice weekend. I have also started thinking about memory boxes. I keep a small book by my bedside and write things in that I want the kids (daughter 15, son 11) to know and think about when they grow up. I hope, like you, it will not be needed for years and years and years….but things tend not to work like that!! So, best prepared. My Best friend died of BC a couple of months before my BC diagnosis and she always said she would a memory box – but never did. So, I am getting on with it!! The Marsden have come up with different reccoemndations. Am I right thinking you are on Carboplatins. SO SO pleased you feel a difference. The Marsden has suggested Taxol + Carboplatins or Gemcitabine + carboplatins or Trip Neg trial. SOOOO confused!! Anyway – lets keep this thread going…………
SadieL
Hi tina,
Beautiful photo!!
I really hope your feelings are right about the lumps. Time you had some good news.
Have a great time in manchester tmrw. Where are you staying? If you get chance, go for afternoon tea at the new edwardian raddisson hotel, which is the old free trade hall, near the midland hotel. I went last saturday and it is fab. Sandwiches, scones, cakes, tea/coffee. £15 each or £23(?) if you have champagne too. The restaurant/bar us calked opus one and very cool/trendy/plush. Very filling too but an absolute treat and worth every penny. Think you have to book though.
Have a lovely lovely lovely break,
Vickie
x
Hi vickie
thanks for your post you are lovely. Yes I feel confident that my lumps have shrunk in the last few days. I even feel more comfortable lying on that side + in my bra etc so it’s gota be a good sign. So needed a bit of reassurance but wasn’t expecting it if I’m honest. As for tmoro… We are only down the road in Liverpool but love Manchester + always have a fab time. We usually stay in the big macdonald hotel but are staying in the new macdonald townhouse on Portland st. Looks very swish. Heading over lunchtime-ish so will suggest the afternoon tea at the radisson to my hubby. Will defo be opting for champers lol! Thanks for the recommendation xx
sadie- it sounds like you have been given a few options regarding treatment. I would defo try the chemo with avastin if I had the choice. There has been good reports of tax with carbo too. I decided not to push for the tax as I want to save that as an option for later but I am hoping to access avastin. Seems strange that some oncs recommend avastin but others don’t. The prof I saw at the marsden said avastin a waste of time to me and my onc also negative but I’m keen to try it. Being triple neg we need all the options we can get don’t we!! Have a nice wkend + lets know what you decide xx
love to everyone else xx
Tina, also very happy to hear the lumps are shrinking! And glad to hear you can enjoy a weekend away while on the current chemotherapy.
Hope you have a lovely time.
xxxx
Hi Tina!
So pleased your chemo.seems to be working and shrinkage is occurring! You really deserve good luck. Hope you have a wonderful, relaxing weekend.
All the best, Sarahx
(Mind you, you’d never catch Mike agreeing to go anywhere while Wales are playing in the 6 Nations rugby! Weekends are a write-off!)
Hello ladies, I have posted once before… my closest and oldest friend has tn cancer, right mast 2 years ago, now skin mets on the scar, has finished oral chemo recently. She had chemo and radiotherapy with mastectomy 2 years ago,and all lymph nodes removed on right side. The skin mets came last summer on the scar, they operated to remove them and took all the lymph nodes under her left arm as well but the skin mets came straight back, so they took more skin two weeks ago. they found a small lump along the scar which was cancer, but are still telling her this is just a local recurrence.If so, why did they take the lymph nodes on the other side? How did the cancer cells get over there? She wants, and needs to be realistic so as to look at the best treatment options…any advice?
thanks so much
bestfriend
Hi All
Bestfriend, I am sorry, I have no advice for you. Your friends difficulties are very different to mine, so no experiences to share. But, Im sure others will……….
I have gone for the Gemcitabine plus Carboplatin – (Gemcarbo) as my first combination to try with Taxol and Avastin as a back up, if needed. Difficult to know which direction to go, but this seems to cover good first options. I am having a hickman line put in as my veins are so bad – anyone else got one? Will save that awful dread of needles and pain! Onc said that this combination is often tolerated better than the TAC I had 18 mths ago so am hopeful I may also get weekends away – hope yours went well Tina.
Love to you all…
SadieL
SadieL, thanks for your reply anyway, I just wish I could persuade my friend to join the forum, she would get so much support from you all, but I think she does not want to accept how things are, and I must respect that. She asks me to find out more about things, and then I have to decide how much to tell her
I wish you well with everything…
bestfriend
Did you have a good weekend in manchester tina? No in-laws turn up to spoil it for you…
Hi vickie
just spotted your post. We had a good time thanks- ha thankfully the in laws knew nothing about our little adventure so couldn’t spoil it 4us!! Had a good bevy and a lovely meal at the hotel. My only complaint was it was very noisy during the night- non stop sirens but we should have known that with it being so central. Will stay at the other big macdonald next time. How’s things with u anyways? Hope ur doing well + getting life bak2 normal now x
how are all my triple neg friends doing? This thread is very quiet hope you are all ok. Has anyone heard from scaryfox I am really worried about her. I have sent her pm’s and know debs who used to post on here has tried+ failed to contact her. Anyone friends with her on facebook or anything? Hope she is ok.
Margaret, sandra, Kelly, Sarah, claire, sadie andtara, hope you are as well as possible today + are enjoying your weekend xx
I have chemo 3 on weds then will be scanned in a few wks. Praying the carboplatin is having a positive effect. Coping very well with this chemo to be honest. Hair not changed as yet, no nausea, main probs from steroids so I’m going to see if I can skip them altogether this cycle.
Love to u all
tina xx