Loucamera, thank you, and yes apparently that is what has happened and I am pleased they are looking so closely at the results and following up quickly. I feel that I need all concerned not to beat about the bush and be as truthful as possible, you know, just tell me like it is. Anyway prepared now for further poking and pricing.
Xxxxxx
Hello to all- I have started chemo on weekly taxol (paclitaxel) and so far I ve had 2 infusions. I was told that I ll have 12 taxol treatments and doctor also said something for 4 more with something else but I don’t remembering it- I will ask him again. So far except for fatigue and pain (bones and muscles) on day 2-3 and constipation I dont have any se - but I guess its pretty soon.
Lynnq, my husband is exactly the same. I believe it’s their defensive way of managing difficulties- or at least I d like to believe that… I am and I was always a person that I didn’t complain Or I didn’t want to cause trouble and do everything my way and my own… so its hard for him to take on my care… hang on. Hoping you are doing fine. I started to write a journal- helps me to “bring things out” and not keep them inside like i used to…
On Tuesday I m having my 3rd round of taxol and trying to be calm… (I have chosen already a wig)
Was thinking Lynn,
maybe paclitax makes us irritable and much more sensitive…I.always seem to be rowing with ohx
And I really am beginning to believe that men, don’t really ‘get’ how we feel
And…if people start telling me how lucky I am, I shall invite them to swap places…I keep getting, ‘well any of us could be run over by a bus at any time’
Heigh Ho…
Moijan
Lynnq I think the whole situation we are dealing is making us a little irritable. My husband also is there for me for chosing a wig and keeps telling conforting things. But there is always that times that your feeling alone… cant help it. Tried yesterday to get in touch with an organization for women with breast cancer here in Greece so I can talk to a physiologist and other women with the same issues… they also have a “staying beautiful through chemo” class which maybe will attend.
Well it is times that I want to be very active and times that I won’t move from my couch…
Tomorrow I m having my 3# taxol and cant sleep…
Well, mine is a bit of a roller coaster, but what I find is day 1 and 2ok.day three, usually s/e kick in, sore eyes, headache, tinnitus, then over the next few seem to vary, my liver isn’t enjoying this cycle much, so not taking paracetamol. Drinking loads of water, trying to repopulate my bowel with kefir, (check with your onc first…mine was ok with it)
always feel nauseous, but goes off for a while if I drink water or eat. Am trying smaller meals…
have mri soon which I’m dreading…to be honest this third cycle week off has felt worse.
but heigh hoxx
hope everyone else is ok,
love and hugs
, moijan
Here I am again. I had my 3rd taxol on Tuesday- so far today (day 3) was the most difficult day- fatigue mostly and my hair is falling a lot. Maybe tomorrow or at weekend I have it saved- I ve also changed the chemo day from weekly Tuesday to Friday. So I can keep up as far as I can with work.
The other thing is that my onc said that after my 12 taxol I m programmed and for 4 Cycles of FEC 
5 months of chemo that is
Today I m completely down… yesterday I had the injunction for white cells boost and I feel like a have the flu:/ and my mood is also awful-
Hey Notered
I’m sorry to hear that you are down. I’m going through the same thing you are but try and tell myself that feeling down is okay sometimes. There’s a lot of **bleep** going on and sometimes the thing that feels best is just to cry and let it all out. I was feeling pretty awful after my 2nd chemo and had to remember at the same time all of this is playing havoc with my hormones. I felt borderline depressed despite having massive amounts of support. I’m only 40 and so my ovaries are taking a massive beating with the chemo and that is also going to affect moods. You’ve totally done the right thing and posted on here and I hope we can give yiu the support to lift you up. You are totally not alone.
Lou x
Hey Ladies
If people are feeling down I wanted to let them know about what support is available. A friend going through breast cancer put this list together for me and I want to share it with you. I’m London based so this may not help all of you but some of it maybe available in the regions.
Charities that offer treatments, relaxation and counselling/advice:
Haven - takes a while to get in their system so sign up with them for an induction asap - I’ve had massage and counselling through them.
Maggies - probably closest to you at Charing Cross Hospital.
Penny Brohn - I did a residential stay on Living Well with Cancer and am on the waiting list for a doctor’s appointment and nutritionist appointment.
Mulberry Centre - in Isleworth
MacMillan - I’ve had reflexology and oncology massage through them and also a relaxation workshop.
Your breast care nurses may also be able to advise as to where the best local place for you to get wholistic support is. My colleague used Maggie’s (as well as Haven) who lives in Ealing.
Kinesiology for diet/supplement advice (if you are open to it as it may mean giving up things and taking supplements that your body is lacking in)
Nutritionists at Maggies, Haven and Penny Brohn
Treatments, counselling and relaxation (Penny Brohn offer the counselling and doctors appointment over the phone).
Cook book called Nourish, Maggie’s also have one.
Chemical free deodorants and products local to the area. Green People, Weleda, Neals Yard, Tropics all good options.
Any critical illness cover you may have. You can call your energy provider and request that you are put on the lowest tariff with your diagnosis. All prescription medication is now free to you. You need to visit your GP to fill in the form for them to countersign and you get sent an prescription exemption card.
Insight timer is a good app for mindfulness/relaxation - you can choose how long you have and what themes you’d like. Helps when everything is feeling overwhelming.
I hope that this helps some of you. There is help out there and don’t be shy accessing it. When I was doing my staging tests I had to walk into Maggies and sit down with someone to get help. They were brilliant talking to me and calming me down. Just knowing they are there at any time has been fantastic.
I hope this helps you.
Lou x
Hi ladies, that’s a great list, unfortunately I couldn’t be further away if I tried. I had 2nd FEC on Wed which is kicking in now, also had further biopsy on Tues, so feeling a bit down as well as a bit sore. Hair just about all gone now too but doesn’t worry me as got some nice hats and wig.
Thinking of you all
Xx
Hi everyone, I’ve had some log in problems so haven’t posted for a while but I’ve been following your progress. I’ve just had EC number 3. Fortunately, I’ve not noticed it getting worse each time, I just seem to get different side effects. It sounds like your regimes are all worse than mine, I’ve still got most of my hair and can manage to play tennis and run a bit. My onc didn’t want to give me any T because the chance of my lobular cancer responding to chemo is small and he thought it wouldn’t justify the side effects so I’ve just got to hope the surgery got it all. I so wish there was a way of knowing. I guess I’ve just got to learn to live with this uncertainty as it’s going to be there for the rest of my life.
Hi all,
I’ve just joined this forum and probably not using it correctly.
I’ve got Triple Negative BC, stage 3. Just finished 4 cycles EC and due to start Taxotere next week. Have heard horror stories and feeling nervous. What can i ecoect?
Thanks,
Tess xx
Hey Tess 1963
I’m stage two triple negative. I’ve just finished FEC and about to start the taxol. I’m also BRCA 2 so they are putting platinum in it every three weeks. I have no idea what to expect but all we can do is take it one day at a time. Try not to be anxious. Another girl I met who’s triple negative got on a lot better with the taxane than the FEC. I guess that’s why they can give it to you weekly rather than every fortnight. We will both get through this.
Lou x
Hello to all- last Friday had my 4th taxol treatment of 12- I was quite tired the days 2-3 - in fact I slept a lot and had a very bad mood. As my onc told me that at the end of treatment I have to do tests again. I m afraid a lot
Lynnq why do you have your CM tests while on treatment? I think somewhere I read that they maybe high when on chemo:/ but I m not a doctor - hope everything turns out ok. My tumor was lobular too- we will never find it if there were my nodes and a tiny area of ductal type
Hi whatismarkay,
Very impressive with both the art and the helping ladies to feel beautiful without hair…it’s great that you are doing these things…I am an artist, but currently don’t feel up to doing any art!
also, you look great with your current hairdoxx
i think it’s really important to have something to feel passionate about…with this illness…I have always wanted to feel I was doing something or learning something justprogresding…long before I had cancer…now I think I did too much before I had it…but am pleased about all the stuff I’ve done since…
‘’hugs,Moijanx
Lobular cancer hmmm I asked my onc about the chemo response and I believe there is still a reason that treating it about the same with idc.Hope I m not doing chemo “for nothing”
I was diagnosed last January had 1.5cm lobular and 7 nodes of 17.the onc said I m 2A and I m now on weekly Taxol and then FEC. Though a lady I met said we are almost the same and doing taxol with carboplatine and then FEC - so I m thinking about questioning my onc (we have the same) why was I don’t have carbo- not that I want to
Hello ladies
Hope you are all bearing up! I haven’t been on much so just doing a quick catch up now. Had 3rd FEC today, which has has hit like a ton of bricks, 3 down, next is docetaxel x3.
Feeling hungry but really nauseous at the moment.
Thinking of you all
X
Lynnq how was your appointment? How is everyone doing l m a day after my 6th taxol treatment- so far fatigue constipation and not much of an appetite
Hello again to all,
Today I have a not so good day. Mostly my pchycology is bad. Thinking all that we are going through and hoping they are are for the best…but there are times that my thoughts turn dark…
Lynnq your onc was right anyways he will know when its time to have the TM tests…and they will actually mean something.
I have a lot of fatique and I’m a little restless. Constipation a little bit and I ve done my paclixatel 6th weekly dose on Friday. 12 more to go and then 4 FEC… I’m a little discouraged today…sorry
Anyone on fec-t changed to t yet? I’m due to tomorrow and just wondering how it’s been for others?