Hi Wayne and Maryanne, So sorry to read about the awful time you have had at the hospital, but it was a relief to hear from you as we were getting concerned. I haven’t been on the site myself for a couple of days but that’s just because I’m packing to go on holiday and I’ve had my stepson from Canada here.
I know the thought of more chemo is awful especially when Maryanne’s hair has just grown back, but it’s better to be safe than sorry. At least it will be over by Christmas and then you’ll hopefully have a much better New Year to look forward to. At least they’ve managed to sort out the draining of the fluid which must be a huge relief for Maryanne.
Take good care of yourselves, we’re all thinking of you and as cromercrab says ‘Hang on in there’ - don’t let this b…d get you down. Loads of love, Dianne x x x
hiya diane
so glad too hear your off on your hols, bet you cant wait too get away !!! i just posted on the feeling low thread reason im on a downer we dont think that bloody glues holding so it could be yet another drain!!! i said too maryanne ages ago id run away if i was you because what evr luck i get seems too be bad or not good, anyway just hoping anybody can answer this question really, which is we start chemo friday week as you all know but once we do start can anybody tell me will the shortness of breath and coughing gradually fade the more the chemo hammers this scummy c**p? if anyof you could shed some light on this that would be brill, thinking of you all and sending you loads of love and wishes.
wayne everyday passed is one closer too a cure
hi sandra
thankyou for that, if anybobdy has anymore info it would be greatly recieved, the 2 weeks too the start of chemo seems like a life time just want too get stuck in now , id do it myself if i could!!! still hope too hear, from anybody whos had experience with this c**p.
love and wishes too each and everyone.
wayne each day passed is one closer too a cure
Just posted on the other thread and I’m so sorry that you’re feeling so down.
We all agree that the waiting is awful and 2 weeks does seem like a long time. If the medical team thinks she’s strong enough to have more chemo, I don’t understand why you have to wait for another 2 weeks… maybe something to do with the drain… I’ve no idea.
When my liver mets was diagnosed, I wasn’t sure whether I wanted it when chemo was suggested to me. But as soon as I made up my mind and wanted to go for it (took me about 3 days for me to decide), I phoned them up and ask them to bring the starting date forward 2 weeks and they managed to fit me in.
So worth a try if no good reason to wait for 2 weeks.
Hi Wayne, good to hear from you. I’m not sure about the shortness of breath as I haven’t had that so I can’t really help. However, I do think she will improve once the chemo gets to grips with it.
As m1yu says, if there’s no particular reason why she has to wait two weeks, why don’t you give them a ring and try to bring it forward. It may be that they are waiting to see if the fluid from her lungs has been drained sufficiently. I’m praying that the glue holds for you.
I don’t know if I’ll manage to post any more until I get back as we leave on Friday and I’m up to my eyes in it, trying to pack, doing last minute washing/ironing etc. I hope and pray everything goes well and I look forward to hearing from you when I get back.
Take care of yourselves and I’m sending lots of love and hugs to you both. Dianne x x x
Two weeks is an awful long time to wait, and we seem to spend our lives waiting in this situation!! As the other ladies have suggested it is worth asking if the chemo can be brought forward,there may be a valid reason, and they may be allowing Maryanne to recover a bit,before they give her chemo, but it is worth asking!
Hope things have settled, and the glue is holding,and you both are getting some rest!
Take care,sending you both lots of love and prayers, Maryxx
hiya my lovely ladies
ok got some news but then i also have a problem, chemo starts the 22nd sept chemo is called capecitabine (xeloda) its in tablet form twice a day, they say its good but then again im no doctor so i have not got a clue if im dead honest so any feed back on this would be more than apprieciated!!!, ok second thing maryanne is getting a bad stomach upset with bonefos so do anybody no if there is an alternative which is as good?? doing my best but id be lying if i said it dont drag you too low ive never been before but it wont beat us, anyway i hope each and every one of you are well,
love and wishes too you all,
wayne everyday passed is one closer too a cure
Hi Wayne
Good to hear from you. I have not had xeloda or bonefos. However I looked up bonefos and digestive problems are listed as a side effect. Bonefos seems to be for bone strengthening - I was given a biphosphonate (called Zoledronic acid or Zometa)for bones which didn’t give me any problems, so maybe that might be an option.
I am sure others will be along soon who know more than me.
Sarah
Wayne u and Maryanne are having a god awful time. Like Maryanne i had my lung drained in february and the talc thing put in and so far touch wood it hasnt refilled. I do not have a cough now which i did have very bad but i do still have shortness of breath on an occasion. I am also now on my third cycle of xeloda (capectabine) which i seem to be tolerating fairly well better than other chemos. I am 36 with a 6 yr old son and very supportive husband but i know living with this nightmare is never ending. I starting ibandronic acid tablets a few days ago for my bone mets and must confess i am having stomach problems already and horrific sweats but feel i have to just get on with these things, like you i hope we are one day nearer to a cure it is just so unfair that we have to go through this and our loved ones have to watch us suffer. This has been a year of hell for our family i honestly dont know how we have endured it but we have and i can only hope that xeloda is working for me i will find out in a month due a scan soon and we will know. I also hope it is working for maryann she deserves a break also as like us it seems you have had blow after blow you wonder how much more you can take. you have lots of support on this site, lots of people thinking of you and wishing the best of luck and thanks for keeping us all updated sending all my love Max xx
hi max like you i had bone and lung mets which after fec completley disappeared. i was put on arimedex but have primary come back, i kept asking them to change me a different hormone but they wanted to operate first, there were so many delays with the surgery, holidays appointments not coming through etc. now have got fluid in lung again so cant do surgery. doctor said it could be infection, have been on strong antibiotics but cough has not gone. dont know what they will do now as have lump, and probobly lung mets again. did you have chemo before max, i could probobly handle fec again but they dont give the same one again do they.looks like they might end up aspirating me although they didnt last time, one lot of chemo and it went.There are a lot of people on this site having the same chemo as you, it seems quite common. I am seeing my oncologist next friday, i really like him, he is always so optomistic about me, but i feel i have lost a little of my trust.may i ask why you are having ibandronic acid tablets instead of intravenous.
Hi Terri i had chemo 5 years ago ( Epi-CMF) and when the cancer returned in february i had my op before chemo. I was very close to death and they werent going to operate but thankfully they did. 4 weeks after my op i got put on Taxol chemo which i tolerated for 14 weekly sessions ( I was due 18) I collapsed on my 14th and had to be hospitalised a scan was organised and progression was found to be happening. So I got a break for perhaps 6 weeks and then started on xeloda (capectabine) to which i must say i seem to be tolerating ok still not a walk in the park by any means but certainly nothing like taxol. I am due a scan on Wednesday to see how things are going. I am currently on my third cyle and I am keeping everything crossed that this is working I hope and pray. I do have to say on two recent occasions to my oncologist they think clinically looking at me i look alot better so that is good to hear which makes me feel good and i do have to say i certainly feel alot better than a few months ago. I chose to take the ibandronic acid tablets as i wanted a break from the chemo ward after i collapsed in it that last time i thought i do not want to see that place again !! so thankfully i take my xeloda daily and now take these bone strengthening tablets daily too it is abit of pallava with timings in the morning but i am used to it now and really a small price to pay. Only side effect is seem to suffer from is upset stomach and sleep disturbances but considering for months on end how ill i was its a godsend, was at pizza hut today and had some well deserved retail therapy. Just so sad that we all have to go through this its very unfair just wish there was a cure !! or at least something that keep it stable for us all so we can lead normal lives. Love to you and everyone else struggling through this ordeal xxxxxx
PS meant to say they are not concerned about my lung anymore apparently the tumours are microscopic !!! it is my liver that has just went out of control !!!
hi max sounds like you have had a bad time. did you have a reoccurance in the breast,was that the operation. i really hope the latest chemo works for you, i have heard a lot of sucsess stories with that one.did you ever have any hormone theraphy offered to you. if you dont mind me asking how old are you. it is so nice to hear that you have been out and about doing normal things like going to pizza hut and shopping.
Hi Terri. no it never recurred in my breast started to feel very unwell in december, cough, bad back, exhaustion and a general feeling of being unwell. I am 36 after numerous trips to the gp even the oncologist i kept getting told it was a chesty cough, kept getting antibiotics, cough mixtures and co-codemal for the back pain eh hello i was displaying classic signs of secondary breast cancer and i felt not one person was taking me seriously until february when i collapsed in a heap of tears at the gp and said i cannot even get in and out of the car without being in agony blah blah and the rest is history got sent for chest x-ray and bone scan where found to have multiple bone mets they were everywhere even my skull !! my right lung was filled with fluid which i had drained but also had op to reattach my right lung to chest wall an awful time but as i say thankfully it hasnt refilled but i do suffer from breathlessness which some days is very bad, i do not have any cough now at all. After the taxol stopped working my onc. put me on femara and zoladex injections which i think i had for one month before starting xeloda. This year has been like a very bad dream and with a little boy it is very distressing at times especially the times i have been hospitalised, but have to say enjoy the good days getting out and even if hubby just takes me a drive somewhere nice and i just sit in the car it is still good to be out and about and i am so thankful to be alive, cant believe i am still here to be honest after all the knockbacks this year but i hope to receive a good outcome after my forthcoming scan fingers crossed, hope you are well and sorry hope havent hijacked this thread !!! i am sending my love to wayne and maryanne and hope they also have the strength to get through this vile time i dont know where we find it sometimes i really dont how are you doing PM if you want xxx
hi max i also have bone mets which hopefully is being kept under control by padmidronate.How did your lug become detached from your chest wall was that a major op. Its so frustrating when the medics dont listen to you i have had that happen a couple of times. i truly hope the chemo works for you max.
My lung collapsed, think there was such a build up of fluid in it it couldnt cope anymore !!! i actually felt it happen December 18th out xmas shopping and felt the most excruating pain in my chest as if a truck was on top of it it was a horrendous feeling !!! so walked around in agony for weeks before anyone even took me serious, i try and not go down the anger route as it wont do me any good but very frustrating when “the professionals” do not listen to you and you know your own body and that something is seriously wrong ! ! ! ! !
Glad to hear your bone mets are being kept under control thats goood to hear !!! hope everything else works out for you !
Max x x
hi you lovley ladies
ok first things first,anybody who fancys hijacking jumping in and out when you fancy you are all more than welcome, knowledge is power so they say !!! good too have you aboard max and terie, ok got onc next week so going too get bonefos change as its giving maryanne a real bad stomach 2nd, im going too do my best too nail this scummy s**t or really damage it, ok now without say we are doing the chemo route you would be bananas not too BUT, and before you say waste of time ,but then im going in too this with both eyes wide open and a double edge sword too do as much damage too these scummy little cancer cells as possible we just had a herbal drug arrive INDOLE-3-CORDINAL now what ever search you put in the net it does real damage against cancer sell and make them commit suicide somehow, they say it will even do things too the cells that tamoxifen wont touch!!! ,ok again i DONT know if it will work but then nothing ventured nothing gained, we /i may be clutching at straws a little but then again we are not really in a position too let any chance slip through the net so too speak it comes in capsule form just need too take 2 a day 1 morning 1 evening, ok its now 1230am and im now going too grab some sleep,love and wishes too you all,
wayne everday passed is one closer too a cure
hi wayne hope marianne is ok. I really admire you for trying this herbal drug out, please let us know how it all goes. I have heard of a lot of success stories with herbal remedies. Good luck.