Just checking in. Had 1st half of my 4th cycle(Gem/Carbo) on Wednesday, feeling exhausted as my bloods were boarderline (already had a delay from last week) Onc decided to go ahead, couldn’t of coped with another deferal as I’ve noticed another enlarged lymph node in my collarbone, which could of been there for a while but only found it last week. I’m having booster jabs from next week which will hopefully help me get to finish the 6 cycles. Looks like I will also be having further radiotherapy which is a relief as I know this can be also very effective in ‘nuking’ the nasties. Will be scaned in the next couple of weeks too so I will find out if there has been further progression, part of me is obviously anxious about this but the other part of me wants to know what I’m dealing with.
Hope everyone is doing ok, Tina good luck on Wednesday…don’t worry about your hair its not going anywhere!!
Glad to see a couple of new names on this thread - hello to Sadie and bestfriend. I’m glad your chemo. is being kind to you, Tina, keep us updated - crossing all crossable parts for you! I couldn’t cope with steroids whilst on FEC in 08 - they drove me psycho! I stopped them after the first round and did have more nausea, but it was better than before. Anti-sickness meds helped a lot. I am worried about Scaryfox too - it doesn’t look good does it? So frustrating that you can’t find out about people on here sometimes. Also hope she’s OK.
I’m not feeling too bad, though having a lot of tiredness/disrupted sleep patterns from this new hormonal I’m on called femara. Also a lot of brain - fog! I’m a bit worried how I’m going to cope as I’ve got a temp.job coming up as a census collector/checker person. I haven’t worked at all since Dec.07 (first dx) and even then, it was only very part-time. Still, it’ll take my mind off things and give me some much-needed exercise. Only trouble is, I have to wear a hi-visibility vest - such a good look!
Hi All – You just think you have got your head round one thing and then everything changes!!! Planned on Gemcarb and was juts about to start then the Onc discovers that I can only get funding for Avastin if I use it for my first line of defense. So, all change and starting Avastin and Taxol on 14th. Having a Hickman line in on Thursday as all veins gone AWOL. And then on with the chemo……………
Weekends are funny things. Washing, visiting family, cooking, getting ready for the week ahead – all very normal! Then you remember, this is not ‘normal’. Our bodies are fighting on a very different front and, gosh I get tired!! I’m sure you all do too. I’m still getting me head around having secondaries. A few months ago all was fine and I was ‘winning’, now it’s all very different. I’m not loosing……but somewhere in between!. But, if one person tells me to stay positive and offers ‘anything I can do to help’ I will floor them! They mean SO well, but it is hard going sometimes.
Best wises to you all – any advice on Hickman lines, Avsatin and Taxol much appreciated!
Hello everyone
wow it’s good to be back!! Call me a saddo bit Ive really missed these forums theast 2wks!!
Hope everyone is doing ok would be good to hear from you all.
I’m in hospital as I had a high temp yesterday + have been kept in for observation. Hoping to escape in the next hour or so coz I feel fine + I’m missing my little man.
I had a ct scan this week as I’ve had 3 carboplatins now + they wanted to check if it’s being effective. Great news is that my nodes are shrinking so the chemo is working woohoo Delighted and relieved especially as I’m finding the carbo very easy to tolerate.
Hoping to hear from you all soon + to see some activity on our thread soon
love Tina xx
Well it has been a long time hasn’t it. First Tina delighted with your news.
I too had some good news and some not so good news. My good news is that the lymph nodes in my shoulders have shrunk so it seems that my chemo is also working. However the not so good news is that it had now spread to my bones. I have been having radiotherapy for the last three days and am having some more on Monday and Tuesday to try and relieve the back pain. I am hoping this will work. It is however really wiping me out and today when I saw my Oncologist he gave me a blood test to see whether I am anaemic and also whether the bladder problems I have been having are clearing up. My last scan also showed a tumour on one of my ovaries so I am having an ultra sound on the pelvic region.
I am also starting Zometa (a bone bisphosorate) in a couple of
weeks time. Does anyone know anything about this. Would appreciate any lowdown on this drug. My next rounds of chemo will start approximately two weeks later.
At the moment I feel it is never ending albeit the good news of the shrinking nodes in my shoulder.
Anyway hope everything is managing well and that you all enjoy your weekend.
I’m so sorry you have had progression to bones, Margaret. You may have more luck posting your Q. on Zometa on the bone sec. threads - I’m sure I’ve seen it mentioned on there. It’s good news about the lymph mets shrinkage, though. It defies belief the way some bits can get better and some worse in one’s body at the same time.
Very pleased your chemo. is working, Tina - raising a (metaphorical)glass to you!
I’m OK - my lymphodema is a bit worse, though,(39% difference in forearms!) so trying desperately to lose some weight to help this. Weight watchers, this time! Feeling grotty at the mo. as the diet has been having a knock-on effect on my anti-deps - feeling a bit whizzy and lack of concentration. Starting a new job(census person) next week for 7 weeks - will be nice to get out and about. Hoping it doesn’t piddle down with rain, but since this is Wales, quite likely! Still, all in all, everything’s fine. Hope you all don’t mind me posting on this thread, given that I’m not actually TN, as far as I know. Glad the BCC forum is back, anyway!
Hi all, I was just checking in here as I too have missed scaryfox, I’ve spoken to her on the forums in the past and I hope all is ok.
For Margit, Zometa is one of the best bisphosphonates. You may feel a bit flu like the following day of your first infusion but after this you will probably have no or very little in the way of side effects. I’ve been taking bisphophonates since January 2004, was diagnosed with bone mets in 2003. My bones are, at the moment, in great shape. (PS. I too have recently discovered ovarian met.)
Just to add what Belinda has said I too have Zometa with very little problems at all. Most people report an achy fluey feeling after the first one, but I was lucky to miss this and didn’t feel any different at all, I sometimes have a mild headache for a couple of days, nothing that paracetamol can’t sort out, it feels more like dehydration, so I drink a lot before, during and after the treatment.
Have you been recommended a visit to the dentist before you start treatment? This is very important, as invasive dental treatment like extractions are NOT recommended while having Zometa. So your teeth need to be in good condition before beginning treatment.
With regard to your ovaries (sorry to hear about your ovary progression Belinda) I too had a growth but when they investigated further it was non malignant fortunately. However I did opt to have the ovaries and tubes removed, the procedure was very straightforward and almost painfree. 3 tiny incisions and one night in hospital. If you have any questions about this please ask,
Take care Margaret and all other ladies on this thread, I too am thinking of scaryfox and hoping she is well,
belinda- I’ve been really worried about scaryfox. I was hoping someone would have contact details even access to her on facebook. I’ve pm’ed her as has debs (smiley) + we have not had a reply. I’m praying she’s ok + just taking some time out from these forums x
Sarah- great to hear from you Hun+ of course u are more than welcome on this thread!! Best of luck with your new job hope the weather is kind to you. Sorry to hear your lymphodema is giving you grief my arm has gone down since my last appt. Only 8% bigger this time. I too need a diet I’m 2st heavier than I was atdiagnosis + feel like a heffer x
margaret good to hear from you. Great news about the shrinking nodes but so sorry to hear that bone mets have been confirmed. Hope you can get meds sorted asap + the chemo continues to work + hopefully stop any further progression. I’m surprised results can be so mixed- I’m awaiting my onc appt to read my full report but I’m praying there’s no progression elsewhere. I just know the superclav nodes have shtunk by over 50%. I’m keeping everything crossed as there was a suspicious nodule on my lung last time round. Something was also flagged up on my ovary (!!) but my onc dismissed it as I have pcos + as I’m still having periods, she said it’s probably normal. I’ll be interested to see what this report says about it x
sandra hope you are doing ok + they’ve managed to sort all the chest fluid problems that were causing you so much discomfort. Have you proceeded with chemo yet? Hope you are feeling stronger x
sadie- how is the taxol + avastin combo going so far? I’m keen to try avastin but oncs keep saying it’s pointless?! I’ve read lots of positive stories especially on US sites. Best of luck x
claire hope you are doing ok + enjoying feeling good before round 5 on weds x
Kelly- haven’t heard from you in ages hope you are ok lets know how you are getting on x
jo (tara) how’s things with you? Hope all is well x
debs- would be nice to see you posting again hope you are ok x
You are good at remembering who is doing what!! There are so many different combinations and profiles that I’m sure you must keep notes!!
I’m delighted on this site when I read about people doing well, getting jobs, tumors shrinking. It is so heartwarming and positive to think that I too could be receiving treatment that will give me precious time!
I started Taxol and Avastin last Monday and spent Mon nd Tues being ‘normal’ but that lulled me into a false sense of security! The overwhelming tiredness set in on Wed and has just cleared now (Sunday). Unfortunately this regime is weekly, so I go for it again tomorrow…………… Weekly is hard work. I get one week in four off, so I’m looking forward to it already and ……… as I’m sure you all feel………. as long as it is working, we will cope with SO much!!
Love to you all and thank you for the virtual friendship,
Awesome news about your tumour shrinkage Tina, really encouraging, bricking it for my scan at the end of the month trying to put it into perspective though and enjoying my last couple of days before swamping number 5…fingers crossed.
Hope everyone is doing ok and enjoying whats left of the weekend…Duran Duran special on later so I’m looking forward to that, Simon Le Bon was always a fave of mine
Hi – As my first session of Taxol and Avastin was fairly hard going, Onc Nurse suggested talking to my Consultant about reducing the chemo (taxol). She said this happened frequently and has no effect on the outcome. I’m not sure how this can be? Surely, less chemo , less tumor blasting action! Have any of you ever faced this decision?
Claire – hope you enjoyed the Duran Duran special!
Just briefly Sadie. My EC has now been reduced from yesterday (EC4) as my oncologist was concerned it was affecting my quality of life. I am assuming that all meds at Stage IV, which I am, are best guesses between giving time while keeping that good time. I also had a similar comment re “not proven” when she suggested the dose reduction. I admit to being a little surprised and it only started to sink in after my appointment.
Feeling rubbish today so will stop for now.
Glad the site is back up. What is different?!!!
Hi,
I am Neelima, diagnosed with sec triple neg bc last year.It came as a shock after 3 good years followi g primary bc. Like typical TN bc it stated with right shoulder pain…progressed to rt sided pnemonia.Ct scan showed the lesions.was gutted.took 6 months of carboplatin.lesions showed excellent response
Onse but after finishing the treatment back again.stated weekly taxol.had reaction to the 3 rd dose. I am meeting my oncologist to see her soon. Anyone had reaction like me? I stated with feeling heat in my face and backache.I am worried about my options left now.
Hi
I am not TN, but am having tax weekly. I don’t have any time off! Have just had 10th one. It would be nice to have a week off, but onc wants to press on. SEs are ok really although I am getting tired now. have already had 6 FEC. Blimey! Will find out on monday whether I am having 12 or 18. Either way the end is in sight!(og chemo for the time being)
x sarah
Re Chemo dosage I had a 10% reduction following a neutropenic reaction they said it is neither here nor there but I was obviously anxious about it, that said I’ve just had my 4th delay as I’m neutropenic again (bloods have improved slightly in 2 weeks but still not enough to have treatment) they won’t reduce again though I’m going to start having the booster jabs (as soon as I get back on the treatment). I should be enjoying these ‘breaks’ but I’m so fed up and upset about the delays its hard to be positive.
Hi Neelima and Welcome…I think you are new here? I hope you find lots of support as I have. Your story is very like mine. I had three years after primary too. But I am further back than you. Interesting that you are on Taxol. I am not very sure what is helpful for us triple negs. There seem to be less options than for others. I have bone secondaries too, and lymph things going on. Hope things settle down once you have discussed a plan of action with your oncologist.
Claire. Sorry about the delays and I know what you mean about “enjoying” them. Difficult when it is all a bunch of worry. I have been lucky enough that every time my white cells have rallied on the morning of the treatment. But I always have to have 2 blood tests, one a few days before when they are not high enough. My oncologist says that if the reduction doesn’t work then the booster jabs will come in. (Sorry if I have said this all before - maybe on another thread)
Sarah. Let us know on Monday what the plan is with the Tax. Are the SE’s as bad as FEC and EC? I hope not with that number…
Sadie and Tina. I agree with Sadie that you must be keeping notes. But you don’t say how you are?! Let us know how things are.
Hello everyone, my closest and dearest friend is about to start tax/avastin, three weeks on, one week off,she has tn mets to lymph nodes in pleura, middle chest and back, and to her left breast in the form of a 3cm tumour. she has some pleural effusion and is finding it hard to eat, says she feels full all the time. hospital have said there is a 50/50 chance this treatment will help, as her cancer has proved very aggressive, she has already battled skin mets, first dx was 2 years ago, right breast mx, and lymph nodes have been removed under both arms. She is very low and feels she is losing this battle… any words of advice or experience would be really appreciated.
bestfriend x
my arm has gone down since my last appt. Only 8% bigger this time. I too need a diet I’m 2st heavier than I was atdiagnosis + feel like a heffer x