Breast Cancer Now Forum

hi i have had my 5th dose of 'T' and so far i have been fine. im having them weekly as i have a bone marrow problem and have to have regular blood tests to keep an eye on the white counts. i am experiencing some tiredness and a little nausea but really its doable and as long as you are kind to yourself and rest when you need to, its fine. Im yet the have the FEC part .......how was it x karen x ... View more

Hi I'm too to have the T bit before EC or FEC because of a low immune system and bone marrow problems. I'm having a slightly reduced dose to see how I cope with GCSF and bloods done every other day. Glad to see someone else having this. I'm not starting for a few weeks though as I'm having radiotherapy at the moment but I will be reading your posts and good luck xx ... View more

hi Nutty well I went to the Royal Marsden Wednesday and saw a wonderful professor who was very positive. He understood my frustration and agreed that a chemo regime would be completeness to my treatment. He has looked at my bone marrow problem but wants to do a PET scan. I wasn't offered this before at the other hospital. He talked about doing C&T chemo in weekly doses with GCSF for the white blood cells. I was very pleased to hear this although it all rests on my recent blood test results and any other tests they want to do at the Marsden. I'm very glad we went private and it seems I can now being treated there as an NHS patient. I don't want to get my hopes up but........can't help but be pleased. I'm due to start radiotherapy Monday for 3 weeks and hopefully back to the Marsden after that. I'm also having the flue and pneumonia jab in the next couple of weeks. Enough about me.....how are you doing, how are the SEs have you lost your hair yet?. Enjoy your weekend and speak soon. Xx ... View more

Hi All I was told use simple soap!aquaous cream and or E45. I was just wondering why some people have the boost and others don't. I had a tnbc, grade 3, stage 2, no node involvement. I'm booked for 15 sessions x ... View more

Hi Zelda You poor thing. That sounds awful. How are you doing now. Thinking about you xx ... View more

Hi Nutty Thanks for replying. I know what you mean about the breast feeding. I did the same with my 3 and still got bc!! I had implants 2 years ago and was really pleased with the results. My scar is only small although I understand radiotherapy can reduce the size and create a problem with the implant so I will have to see. I was scared about chemo but was wanting to throw everything at the tnbc. I do feel very upset about the bone marrow problem as I'm thinking long term about a recurrence or a new cancer and the implications of that. My onc says I have less chance of it coming back but I feel I have no defence if it does, especially as the triple neg means there's no other targeted therapy or hormone treatment. I'm yet to come across anyone who has been refused chemo after it is recommended to them. That's why I feel I have to go private. Not sure how much we can afford as we have no private medical insurance. I do just want to get on, close the book and get back to my family, worrying about getting into my skinny jeans and where to go for lunch with my friends!!..... All that lovely stuff in life. Hope you had a good weekend. Let me know what's going on with you. Xx ... View more

Hi Nutty IOC so will you opt for reconstruction? I completely understand your decision and would do the same if given the opportunity. It appears I have a bone marrow problem...... No one seems to know what or how or why but the oncologists have said the toxicity of chemo could be very unsafe for me. I'm not happy as I had a tnbc and I'm just 40! Too many years to protect I feel. I've been very scared by all this. Have decided to go private to the Marsden as I don't seem to fit the normal text book bc treatment options and the docs appear to want to wait and see!. Not good enough for me and my family I think. I might be trying to crack a nut with a sledge hammer as my doc says I've had surgery and the cancer has gone........ But how would you feel without the option of chemo? Thanks for listening xxxx ... View more

Hi nutty75 Just wondering why you are having a double mx? I'm triple negative too but wasn't offered a mx. I'm battling with the oncologists at the moment as I can't have chemo. I too was diagnosed in July And have had just surgery to date. Feeling very vulnerable x ... View more

Hi nutty75 Just wondering why you are having a double mx? I'm triple negative too but wasn't offered a mx. I'm battling with the oncologists at the moment as I can't have chemo. I too was diagnosed in July And have had just surgery to date. Feeling very vulnerable x ... View more

Hi Zoe I'm confused about the flu jab too! I'm going to ask next week as I'm seeing a haematologist, oncologist, my gp and spine doctor...........thinking if I ask them all I might get an answer !! K x ... View more

Hi Zoe As your bc is triple negative, have you been referred for the brca gene mutation testing? I have had the paperwork through and I go for the counselling and bloodwork on Tuesday. I think the results can take up to 8 weeks but I think I need to know everything about this for the sake of my sister and daughters. I know it's something else to think of !!!. Take care K x ... View more

Oh Barbara I am sorry to hear that. It looks like I won't be having Chemo. My bone marrow is hypocellular and only working at 15% and therefore too dangerous to have chemo. I'm gutted. I've had 3 bone marrow biopsies all saying the same. As much as I understand all your fears for chemo, I really wanted to throw everything at this bloody disease and fight it. I'm 40 with three children and I feel I have a lot of years to protect. I'm triple negative and so chemo is my only adjuvant treatment. Ive had my scanning for RT and due to start that in a couple of weeks but I can't help feeling left out in the cold. Obviously we are all scared of a little tinsy, winsy micro cell hiding somewhere and chemo is the drug to flush that away right?.......I'm afraid I'm going to be looking over my shoulder, aware I'm not on a level playing field should the bugger turn up to play again!!!!! ... View more

Hi Zoe I've just read your message and you sound like me!! I was diagnosed in June this year with a grade 3, invasive ductul carcinoma, had a WLE and SNB with no node involvement. I'm too triple negative. I was due to start chemo August but I was found to have a blood problem which then resulted in a bone marrow problem.....and then after having an MRI and bone scan, was found to have shadows on my spine! Long story short, (11 tests and procedures later) I found out today that the breast cancer hasn't spread to my bones but I'm having further tests to see what's going on in my spine. I have a meeting on Friday with my Onc regarding starting chemo (I hope!) and radiotherapy. So I have been following first the August thread, then the September with a view to hoping to belong to the October thread! I'm just hoping I'm not too late and that my marrow can cope with it. Anyway, you must be feeling a little scared and wondering what's going to happen. This forum has a wealth of experience and advice on just about anything....friends and family are great but sometimes they just don't understand what you are feeling..... I'm just a little bit older than you at 40 with 3 children. You will find lots of us on here going through the same emotions, fears and sleepless nights!! You just need to look at what stupid o'clock some people post there messages!! Speak soon K x ... View more

Hi Shauna72 So sorry to hear your news. I too am a younger woman. I'm 40 and have 3 children. I was diagnosed in June and had my op in early July. I remember those early days when the news just fills your head at every waking moment. I've never been a particulary emotional woman I cope well with most things in a controlled way. But this news hit me like a truck!!. I felt as if I was in a bubble and it was happening to someone else. Believe me, it does get easier. Every day you absorb a little more of the reality of it. It doesn't go away but it becomes more manageable. Use this site and forum for informed discussion and advice. Don't google as a lot of the information is out of date. You have every right to feel upset, angry and sad. On this forum you will find so many younger women who are going through or have been through the same as you. We are all in this together. Take strength in you family. You need them right now. Let your friends and family support you as I'm sure they will want to. I have been so humbled in the kindness of not just my friends, but people I hardly know. This is one of the toughest journeys you will take. But you will do it........ Thinking about you x much love. ... View more

I recently had a smear test. I think if we are lucky enough to have a health system we should use it! I do know what you mean about being over medicalised! It's like...'anything, else you want to prod,poke,scan...really' ....but I would get it done. X ... View more

Just nudging in on this. I've recently had a MRI and bone scan as both showed unusual shadows on my spine. I had a spine biopsy X-ray guided yesterday and I'm now awaiting the results. My surgeon said it was the only way to find out if it is or isn't mets. Arthritis hasn't been mentioned and I'm now wondering if all this has been unnecessary procedures. I'm just 40 with tnbc, grade 3, no node involvement. To date I've had no treatment apart from the WLE How did you get on rose? X ... View more

Hi all Thanks so much for all the messages and support. Had a night in hospital after the spine biopsy to keep an eye on my bp. Surgeon took from several sites on the spine and also some bone marrow. Waiting game again........oh the waiting, doesn't it kill ya!! Love reading all your posts. Hope we all get a good nights sleep xx love to all xx ... View more

Hi Peta Im going through a simulat thing. I've had a spine MRI and bone scan showing strange shadows on my bones. The spine surgeon and radiologists can't identify what it is. I had a spine biopsy yesterday and have just returned home from hospital. The surgeon said he took away a couple of sites of bone and some marrow and it's going to be decalcified and tested. Should get results in about a week. I too, can't have chemo and my triple neg tumour was removed back in July. I know just how you are feeling. Glad you are having the biopsy. It's a little painful today as it's my back but the pain killers work and the general anaesthetic is wearing off now. Good luck and let me know how you get on Choock x ... View more

Good morning ladies I haven't been on for a while now. I guess I feel behind everyone as I haven't started any chemo... Or any treatment for that matter! Had a meeting with onc last week. Bone scan shows same shadows on spine as MRI. I'm having a spine biopsy (under a general) today, hence the early start! My bone marrow shows hypocellular activity and so it's not safe to do chemo. Perhaps never will be. Seems I have a few things going on and I suspect a lengthy process ahead of me. I had everything planned for surgery,chemo and radiotherapy but this disease (and maybe something else) has other plans. Has anyone else had problems with their bone marrow. I feel like the only person not having chemo and feel really vulnerable at only 40 with triple neg Bc. I'm still reading all you posts, all the ups and downs..... Love to everyone. Xxx ... View more