hello ladies
i started weekly taxol last week for secondaries to my bones, liver and lungs. I had previously had a set back after having a build up of fluid in one of my lungs so i had to be admitted to hospital have this drained then my lung had to be reattached to the chest wall, so this halted the start of chemo. Anyway chemo progressed last week and yesterday I was fitted with a hickman line to alleviate the horrendous carryon with my vein situation. Went for my chemo session today and was told that some of the fluid they had extracted from my lung which at the time they had suspicions about contains TB. So to keep me safe they have started me on an intensive course of anti-biotics think I have to take 10 in the morning and also have other pills to alleviate the various side effects these are going to cause. My medicine cabinet is fit to burst now, it looks like Boots Pharmacy. They are talking about seeing me in 2 weeks and perhaps starting chemo again in 4 weeks but that is not confirmed !!! So I am absolutely devastated I dont feel I have time on my side to be waiting around weeks again for chemo to start. I am 36, i know my cancer is aggressive and i cant help but think it mst be spreading like wild fire each day.
Obviously tamoxifen hasnt been working for me and he took me off that today gave me a zoladex injection and tomorrow have to start on Femera . I dont know too much about Femera wonder if anyone can shed any light for me.
Just cant believe this is happening, all the family are so let down too thinking we were getting on the with the chemo and feeling we were doing something but now just need to hang back and take the antibiotics. Of course rationally I know that ths needs to be the case but cant help but feel frightened that my numbers nearl up, dreadful when there is a 6 yr old little boy caught in the middle of all this.
Love to all Max x x x x
Max it just makes me weep when I read I read of women like yourself with little ones having to cope with all this. It all seems so wrong. I do hope they can put you back on the chemon in 4 wks time. At least that way you will only have had your next treatment delayed by a couple of weeks (if my maths is right). Hopefully the Femara will kick in and do its job. I am not hormone positive so don’t know a lot about it. But I do know it is usually for post-menopausal women so you have had the zoladex injection to fool your ovaries. I know they often use just Femara (or other AI’s) without chemos. Everything crossed for you that the abx will do their job along with the femara.
Dawn
xx
Max,
I dont know what to say. You have been through the mill.
I have been on zoladex and femara for a couple of years, for secondaries.
It is a recognised treatment for secondary breast cancer. As it does not affect your blood counts or anything. I believe that is why they will keep you on that until the risk of infection has passed. By that time you will be hopefully be fit enough to start the taxol.
Try ringing the helpline Max. They have been very helpful to me. You could try coming on live secondary chat. Its on right now. There is usually a nurse available for advice.
Just click on community-then live secondary chat-then sign in. Julie
hi max
just want to send you a big hug, i have young ones also, i was diagnosed with liver secondarys dec 09 having been told the previous month i was doing well and no evidence of disease!!, hope you get sorted soon
love galen xxx
Galen you could always join us too… julie
Max - so sorry you are having such a rough time - really hope the antibiotics kick in and you can get back on track with treatment …meanwhile…much love jayne x
Max
So sorry to hear about this it’s what we all dread, infections that stop the chemo! My children are 15 & 16 now and I am trying so hard to keep things normal for them whilst they are going through their exams. But when I think back to them being little I don’t know how I would have coped -
Thinking of you and wishing you well so much.
Sue xx
Max
Really sorry to hear what is happening. I can completely understand the sadness with children, as mine are only 6 and 3 and I was dx in July 07 with bc and liver mets - double whammy.
I hope that things settle down for you and that the infections clear up and you can start your chemo. I am sorry dont know anything about femara but am sure people on it will respond and help you.
Sending you big hugs and lots of love
Dawn
xx
Hi Max
Sorry I can’t comment on the treatment side of things as I’m on a different regime from you, but I too wanted to send you a cyberhug and say that I also understand your distress re children (I’ve a 3 yr old). I often wonder when my time’s going to be up - will I be one of the lukcy ones who defy the statistics or will I succumb within the predicted timeframe. And that’s while I’m on a treatment that is clearly working. But mine’s an aggressive cancer too and so I can imagine the fear and frustration you are going through over this delay and hope that the antibiotics do their stuff soon and that you’re soon strong enough for the taxol.
Love Alison x
Hi max - I can imagine how frustrated, angry and upset you must be with the chemo being cancelled but I’m sure they are doing it for the right reasons. You really wouldnt want to have a low neuts count and try to fight an infection at the same time. When my (bone) mets were dx a couple of years ago my onc initially said I would got straight on to Femara and Zoladex and the results would be the same but take a bit longer to show. I eventually said I wanted chemo (not sure ‘wanted’ is the right word!) as I needed to see quicker results and deal with the local recurrence. What I’m trying to say is that hormone treatments with or without Zoladex for hormone receptive cancers are fairly common and I’m sure they will put you onto the chemo regime when any signs of infection have gone. Good luck and I hope you can make the most of your time before starting chemo as it does dominate your life whereas AI’s and Zoladex won’t.
Nicky xx
Hi Max,
I’m so sorry to hear of your set back but want to give you a bit of incouragement/hope or whatever you may call it.
Last year my nephew who was 8 at the time was having stomach problems and after loads of tests that fount TB in his liver. He has had to have a 6 month cause of loads of tablets daily but has made a full recovery. On top of that he was dx as a celiac so can’t eat wheat, barley etc.,
Anyhow what i’m wondering is how sure are the docs the cancer is in your lungs and liver and its not just TB, because with him they were unsure if it was cancer. I know i might be sending you down the wrong path but he also had a growth on his liver and they had to do two biopsy’s and put tubes down him to get flem off the lungs.
Get them to further investigate it as it took ages to DX him with TB of the liver as its so rare and a doc from france was involved in the whole DX as the UK docs were stuggling to identify the condition.
I do hope you have your chemo soon and i send you love and hugs.
take care
sukes
PS you can PM me if you want more info
Hi Max,
So sorry to hear about you awful predicament at the moment. I just wanted to say that I have been on Femara since November for secondaries in lung and had ct scan 2 weeks ago and tumour has remained stable, so it does seem to work, try not to worry too much as at least you are having some treatment until the chemo starts and you will be stronger then. I hope this makes you feel a bit better while you are waiting for chemo.
My thoughts are with you and hope you start to feel stronger soon.
Take care Marina xx
Again thanks to each and every one of you all who have replied to my message. This is such a frightening time just now and breaking my heart because of my little boy. Why does a little 6 year old boy need to have this in his life a mother who at the moment is of no use. Had to have gp out to house today as husband was worried as all i have done is sleep and when i wake i am very confused and disorientated and drenched in sweat. He thinks this is side effects of all the TB drugs I am taking. Absolutely no quality of life just now but i know there are worse off than me and i shouldnt be moaning too much.
SUkes so many people have been mentioning about the TB connection with the liver and bones and lungs my husband has been doing a fair bit of research today on the internet and is due to to email my oncologist as he is not happy one bit. We have now had two pieces of conflicting information the lung surgeoon who operated on me a few weeks ago called the house last night and said he was wanting chemotherapy to resume as he did not think the TB was 100% confirmed then when my hubby phoned the oncologist after that call he said under no circumstances was he going to issue any chemotherapy as he wants this infection cleared up. SO we do not know what to do we are by no means medically equippped knowledge wise its all such a worry.
I am glad to hear though that femara seems to be working for u girls at least that is something just now as it is a worry to think nothing would be getting done. I just feel time is ticking on and its time i do not have, Look in the mirror and see a skeletons face looking back at me, sorry girls not having a good day at all.
sending love to all & thanks again for all your lovely messages of support just now. max xx
Hi Max
Such a worrying time for you. On the positive side, I have been on letrazole (Femara) for 5 months now after my chemo for liver mets last October. Whilst the chemo did shrink my liver tumours the letrazole has shrunk them even more, infact by a further 50% after 4 months. I was very surprised as I thought the drug would hold progression and was thrilled that it did more. The side effects are not bad - just stiff joints especially wrists, fingers, ankles, worst first thing in the morning or after sitting still. My onc said to me last october that if the letrazole worked for me then he anticipated that it will work for several years.
Hope this helps
Louise
thanks Louise thats very encouraging to hear. Think becausae i had all my hopes pinned on chemotherapy it was so devastating to hear i have not to get it now for several weeks. As i said i did not know much about femara but that is good to know fingers crossed there is some sort of response.
thanx Max x
Max,
My nephew finished his tablets in feb 2010 so if u want i can give you my bros number and he will have a chat about the medication.
It must be so confusing as you don’t know what to think.
Sorry i couldn’t be of more help but sending you hugs and hope you feel better soon.
Also if you want i can ask questions to my bro and get back to you if you want?
Take care and cyber hugs
sukes
Sukes
thank you very much for your offer of help. I may be in touch to take you up on your offer. My husband is going to phone oncologist tomorrow and wants to know answers to find out exactly what is happening here as this whole TB thing is confusing us especially when we keep reading online about similarities to cancer and it does seem to be bones, liver and lungs. I have a neighbour who is a nurse who was in earlier and was saying more or less the same thing.
So he will phone and hopefully get to speak to onc. tomorrow and see whats going on.
I will private mail you if I need any help
thanks again Max xx