Hi All
Haven’t posted for a while as find site so difficult to navigate.
Had my WBR x 5 at the beginning of August and then a week off to recover.
Then had to have oodles of fluid drained from peritoneal mets.
1st dose of Eribulin last Monday and slept for 2 days. Next one on monday assuming my count is OK then a week off.
Hopefully fluid building less slowly as off to a friends place in Salcombe at the end of August, which is bit hilly and I wouldn’t be able to waddle up the slopes!
Love to all
Bald-again Laurie!
Hello Ladies,
I stumbled across this thread while looking at the triple negative heading- I wanted some advice about a chemo dilemma. Not sure if I am ‘eligible.’
I was first diagnosed with a triple negative b/c in June 2009. Had chemo (4 ec and 4 taxol), WLE and lymph clearance and then rads. It was a large tumour that time- 5 cms. Grade III.
Then in May 2011, learned I had a brca1 mutation. Had bilateral mastectomies in Feb 2012 and a new cancer was found in what I then called my ‘good breast.’ It was an occult tumour, ie not visible on scans and 1.5 cms. Grade III again. Triple negative. Had SNB and lymph clearance as one node effected.
I had a lot of problems with one reconstruction, eventually had a completion mastectomy, while on chemo and still not healed (due to rads).
Anyway, no-one seems clear whether they think I have a ‘recurrence’ or whether its a new cancer. Scans no help.
My onc recommended carboplatin and taxotere and from the beginning was always a bit vague about whether I would have 4 or 6 cycles. He was very open that this was not a conventional treatment for breast cancer but said that there had been some promising results in women with secondary brca1 triple neg tumours.
I went to see Onc just before cycle 5 on Weds. He explained there was no evidence to inform decision about whether 4 or 6 cycles is better. I think he is concerned about over treatment, and although overall I am coping with the chemo. it gets harder and he thought the problems I am having with peripheral neuropathy were great enough to stop. I felt I was put in a terrible position- or course I wanted to stop chemo but I felt that I would have failed if I hadnt had 6, and if the cancer comes back, I will always have this question in my mind. A further consideration though is that I had a 6 week delay due to surgery and he says there is a theoretical risk of resistance.
I wanted to know if anyone here had faced a similar dilemma, or what chemo and how many cycles you had been given?
Rattles
PS
(Hi Lulu, was going to PM you about this, but always feel a bit guilty about using you as a personal advisor, as you know…)
Dulcie calling Dulcie!
Dulcie, Lemongrove has just posted on another thread about the Cyberknife charity
if only I can get the link right.
http://www.breastcancercare.org.uk/comment/2045815#comment-2045815
Phew! Done it!
Lavender
xx
Hi, I’m wondering if anyone can help me. I was told yesterday by my gp that I have ‘highly suspicious’ something’s on my liver that are more than likely (read as definitely) mets. I’m not surprised as I have been uncomfortable in my abdomen for he past few weeks.
Im now in practical mode. I have some fluid retention in the upper abdomen, it’s really quite high and is causing me to feel really tight. Has anyone else had this, know of this? How serious a sign is it? The man at the US scan didn’t seem too bothered and I’ve seen 2 different docs these past 2 days (sickness and diarrhea which was apparently a bug. Feeling better now) and neither have said anything or suggested whisking me off to the hospital. I was given some tablets to reduce the fluid but it was after taking 1 that the vomiting and other started and although the gp said it was just a coincidence I’m a bit nervous about having another, mainly cos I’m in the isle of man and am going home on the boat tomorrow so dont need all of that going on. I’ll try again Monday.
The other thing is that I’m seeing my onc on Friday - what questions should I ask? What alternative tests should I be asking for? what shouldn’t I put up with?
I would put this in a new topic if I could but it won’t let me. I hope you don’t mind.
Xx
Thank you Lavendar Lassie xx Stay well…
Dulcie xxxx
Today I’m celebrating my 1 year wedding anniversary. There’s a Delia Chicken, Sherry and Tarragon recpie cooking and I’m enjoying a glass of white wine in the garden. Raise a glass with me ladies!
Moondog xx
Your very good healths, Moondog and Moondog’s man!
hi all a update on me well my onc rung me fri they have looked at all my scans and have now decided they are all growing well 2 are out of the 4 but because they are within the 20 percent limit whatever that means its classed still as stable ive another node appeard in my lung which they rekon as always been there but to small to be seen and dif radioligest pick dif things up wish they would all do the same job so we knew where we stood im allowed to stay on cap for 8 wks then will be scaned again im now feeling this will be my last lot as mets on the move again was hoping for a bit of time on cap but seems im only getting 7 months on all chemo pain looks like will be on iv chemo before xmas wonderful but we see hope everyone else is doing ok moondog gd luck cheers to u both hope u have a great night off to get my hair and nows done tomorrow woo love to all laura xx
Hi ladies xx I had a ‘look’ at my lung mets today on onc’s screen! I’ve got lots and lots of tiny ones and ten that are a bit bigger …so i am not suitable for Tomo Theraphy or Cyberknife…? i was looking at Cryotonics …where they can freeze tumours in the States…can i ask…do most secondaries move through the blood? Only my surgeon made such a big thing of telling me my lymph nodes where clear…whilst it was in fact already growing in the lungs…
I was not given my chemo or rads today as my wound is in a bit of a mess…so off to get it looked at and drained …again on Thursday.
I do think of you ladies even though i have only been here recently …when you don’t post for awhile i worry…then it’s nice to see you ‘pop’ up again!
Dulcie xxxx
I just came on to see if anyone had responded to my intrusion onto this thread.
Wanted to send hug, love and support to Laura and Dulcie. You both sound as though you have had a very challenging week and thinking of you.
Rattles x
Rattles, I’m sorry no one has answered you, they are a lovely bunch in here, and have been very welcoming to me among others over the last year and more, even if strictly speaking we have not yet become eligible for this thread.
I don’t know the answer to your question and wonder if you would get more response from starting a separate thread? According to something I glimpsed yesterday, you then have to answer yourself to get into the latest posts section. Worth a try?
I have seen in discussion where someone has had to come off chemo for a problem, that they don’t absolutely know how many cycles are needed.
Good Luck!
Lavender
xx
hi rattles you should have just messaged me… i was actually just gonna email to see how you were getting on.
i had 6 carbo tax but think the tax was a lower dose than those who have tax after fec… so you could maybe see if you were on the full dose… think mine worked aout about 450 mg per kg rather than 400 mg per kg… (not even sure if these are the correct units).
i also know there is a lot of research recently showing that 4 cycles is just as effective as 6, but it will probably take a while for this to be rolled out nationally as many oncs have only just started doing 6 cycles instead of 8 (and some still do 8!)
Dulcie cancer can travel by lymph or blood or both… even with negative nodes there is still a remote possibility that the cancer still used your lymphatic system to travel through your body but didnt stop off in your lymph nodes long enough to leave a deposit behind, or that it has travelled a different direction through less common lymph drainage eg my auxilla lymph nodes are and always have been clear but the cancer travelled through a different route to the interpectoral lymph nodes.
laura really pants to hear the cancers on the move again, but hopefully it will continue to be minimal xxx
moondog congratulations to you and your hubster x
SCACO sorry to hear of your recent concerns. how do you know you have something suspicious on your liver? have you already had a scan? or is it something your gp can feel? if you havent had a scan then i think that would be quite important and also getting all your bloods done. hope your appt goes well on friday.
sadie hope your doing ok
love and hugs to all you lovely ladies xxx
Dulcie, I’m really worry to read that your lung mets are too diffuse for CK or Tomotherapy. Have you looked at radiofrequency ablation? Also arterial infusion could be another thing to look at.
Also as to your question about how cancer spreads. Unfortunately as Lulu has said, C uses both the lymphatic system or the bloodstream to move around. That’s why people who were originally diagnosed with no lymph node involvement, subsequently relapse with stage 4 cancer.
Laura, sorry to read you’ve had some progression.The main thing though, is that it’s still within stable bounds, and you docs at the Marsden are keeping on top of it.
LG X
Thank you Lemongrove i will go and take a look at what it says on google…i have heard of it …but that is all! Thank you for taking the time to tell me x Us cancer patients get more information on these boards than any onc …or doc would tell! Unless of course you have a brilliant team…
Lulu xx Rattles i’m sorry i couldn’t help…but thank you all …everyone is so so kind here!
Dulcie xxxx
Hi there,
thanks for all your kind replies and welcome.
Just a note to Laura to say I am a London girl and treated at the RM in Fulham.
Lulu, thanks, like I said, I always feel a bit guilty using you as a personal advisor…
Just incase anyone is interested, the dose on the bag said 500 but dont know what that means. I thought onc might say reduce dose but he didnt.
SE’s this weekend on top of the usual were mild hallucinations, light-headness and feeling faint. Pins and needles in bowel and baldder as well as hands and feet and like pins and needles just moving up and down my body, in nose, lips face ect. I also feel like this one has hit me like a bus. I get the feeling that onc’s unhappy to give 6 when he does not know if this is more effecttive than 4. A further factor is that the incision from failed reconstruction has not healed in the middle, they say due to rads and chemo (even though they said chemo would not undermine healing!)
Like I tried to say, its hard being a triple neg. lady once. Getting it twice makes you ‘rare’ for all the wrong reasons so I am interested in your experiences/feedack. I cant offer specific advice to you but wanted to send support.
My Onc has talked about PARP inhibitors as possible treatment if my brca1/triple negative cancer were to return. Dont know much about it, but thought I would mention it.
Love and support Rattles x
Hello
Rattles, those are pretty full-on SEs and I hope you feel a bit better now. I’m really intesrested in trying the PARP trial once my course of Carboplatin finishes. I’ve been reading bits and bobs about it still holding promise for BRCA people. Google PARP and quite a few recent articles come up. My onc seems keen and the prof I spoke to at the RM has referred me to the trial team.
Dulcie, I found it quite weird seeing my CT results on the screen, I could no longer kid myself that someone had just made a huge mistake or spilt coffee on my results or something. It really brings it home.
Laura, sorry the results were a bit bluuurgh. You’ve had a bit of a crappy time of it. Hope you had a nice pamper.
Tara, how are you getting on? Any joy with the house hunting?
I’ve been in bed most (well, all) of the day after my 4th Carbo yesterday. Just sick and wiped out. Hopefully it will lift in time to go away to Cornwall on Friday. Looking forward to visiting the Eden Project and taking the girls to the beach.
Lots of hugs to you all
Moondog xx
MRI results were normal. Yay! Its good to know the tax and carbo seems to have done the trick. Moondog great news that the carbo is working for you too. Hope your feeling better and enjoying your holiday.
Laura any more news? Xxx
Rattles the parp inhibitors do seem to have had some good results for brca ladies so it’s something Iv been watching too having had a recurrence in my chest wall and conservative surgery I’m not entirely convinced this is the last Iv seen of it, but just glad its gone at the mo. hope your boobie gets better soon. Thinking your pins and needles is some kind of neuropathy. I didn’t get that so much as tingly pains in hands and feet and a numb nose. Had hallucination after a few seconds of first tax but always had piriton and hydrocortisone after that and was fine. But did get breathless, faint, dizzy, weak and palpitations from the tax and they got worse each cycle. Now six months on and these symptoms have pretty much all gone although still dead tired.
Love and hugs to all xxxx
Dulcie and Sadie I too have been on Capecitabine and just finished round 8. There is a thread discussing the problems and hints for people on the drug and I just posted on it this morning. If you cannot see it let me know.
I only stopped the drug 2 weeks ago because I needed a complete hip replacement when the pin I had inserted last September decided to fracture, yes not the bone but the pin. Got out of hosp on Wednesday and now on the slow road to recovery with more painkilers added to my list including Oxynorm ( which I keep miss- pronouncing as Oxy-MORON.) Also paracetemol and asprin as I am off the Warfarin injections.
I have also re-started my Letrozole after discussion with my GP as I felt “vunerable” with no treatment ongoing for bone cancer, plus restarted Diclophenac as I had to stop it before OP as per anaesthetic Dr. So I filled with pills but without them I am in great pain as they had to cut away a largish bit of bone to insert my new hip. But each day there is a small improvenment and I did not need any Oxynorm between midnight and 9am which is good.
I can go upstairs on my own and get in and out of bed ( using my own neat way of pushing my good leg on the bedside table and using my arms behind me to pull myself in!!). This is becoming easier every day as my OH had to lift my leg off the floor and just hold it until I could manoever myself in and out. I can do it myself now!!!
The “dog lead” aid they gave me is useless for people with damaged ribs, bone mets and a muscle missing from her back yet they expected me to do it before they would let me home. This was in the Orthopaedic ward but some nurses do not know much about our special needs or disablement. But my OH is a trained nurse so I managed to convince them I would manage better at home.
In hospital what they do not give you is TIME to REST. Each time I nodded off after some exertion or other I woud be woken to have BP taken, or pills given or blood tests etc. I cannot do what normal patients having a hip op done can manage. It just isn’t the sAME and they are not clued up on it. I needed a blood transfusion when i was in but it increased my Hb from 7 to 10.1 which made me feel a bit livelier!
Todays target is to have a shower again and wash my hair. My husband will help me as he did when I got home but I think it will be easier this time round as we encountered problems so know where we went wrong last time. I have a bench seat in the bath which allows me to sit and shower in the bath. But it was scary last time as i was in much more pain. I manged to dress in proper clothes yesterday, I can manage the stairs at home with crutches. So every day is going in the right direction even if it is a two steps forward and one back now and again.
It is so good to hear from all of you who have been missing. I have read all your posts. PLEASE keep in touch if you can as your imput has been truely missed. Good luck to all of you struggling with anything including thinking about moving house etc. Much love Val
Hi Scottishlass xx I am already with you on FB xx You seem to be going in the right direction in getting better! I understand the hospital situation…when i had my mx…there was only me on the ward…but they were not used to cancer patients…but they WHERE like little hitler’s just the moustache missing! lol…on my ward anyway!!
Is the thread the Xeloda one? I’m Amore
Dulcie xxxx
val glad your home and being looked after i had been wondering how youd got on xxx