Dont know where to start. Just been diagnosed with secondary cancer in the back and bone marrow. would never have known if i hadnt had persistant back ache after my reconstructive surgery. Never in a million years was I prepared for the news when the oncologist told me what the tests found.
Its been weeks of hell - going through test after test and yesterday signed my consent forms to start oral chemo. am starting chemo tonite and am so scared. Am experiencing a mixture of feelings - anger, sadness, despair and fear. Mostly anger really - angry at the world, family, people around me. Angry that my future seems so uncertain. It just seems so unfair!!!
So sorry to hear youāve joined the club that none of us wanted to be in, but glad youāve found your way to these boards, and hope youāll find lots of support here. None of us will be surprised to hear how youāre feeling right now ā thereās no satisfactory rehearsal for this awful dx, and it brings a huge storm of emotions ā it will take some time before you feel anywhere near a ānew normalā. It sounds like youāll be taking capecitabine chemo tablets ā I was dx with bone & liver mets almost six years ago, have been on capecitabine (and Bondronat & Aromasin) since then, and very lucky that this treatment has worked well for me, without too many side effects. Hope you have the same luck with it too, and please do keep in touch with us to ask a million questions, have a million rants and let us know how youāre doing.
Marilyn x
Hi Jas,
just wanted to welcome you and to say that the way you are feeling is normal. We can all relate to the anger and fear plus a whole load of other emotions but I promise it will get better and you will learn to live with a new normal. We all do it just takes a bit of time.
I also think the tablets could be capecitabine(xeloda). I had these and for me they were the easiest chemo to tolerate. Keep your feet nice and moist with cream.
You will get lots of help and advice from the forum we are a great bunch of women.
Love Debsxxx
Hi from me too Jasā¦I was diagnosed with bone mets in 2003ā¦it was a huge shock as I was diagnosed with mets from the very beginning. Allow yourself plenty of time to come to terms with your news. I felt in shock for ages but we do all seem to come through and find our own unique way of coping. Since 2003 Iāve had long periods of remission, years in fact, due to good responses to treatment. If as everyone has mentioned the oral chemo is Xeloda (capecitabine) then just to let you know Iām also on this chemo at the moment. Iāve found it very doable and have had the very minimum of side effects. Iām on the chemo for as long as it works and so far itās been working well for nearly 16 months. Not all find it an easy chemo but many of us seem to. You will find much support hereā¦Belindaā¦x
Like the others have said you will find we all understand your feelings just now. Actually your last few words rang a bell with me. My reaction to the secondaries news, and previous primaries was one of overwhelming sadness. Strangely I never did the anger one. I was dx 19 years ago and then extensive bone mets in 2002. Since then I have been on pamidronate and herceptin - so no chemo - back in 04 I had exhausted all known ones at that time.
How long has it been for you since the recon? cos that must have been so hard for you to get anyone to acknowledge this could be 2ndaries.
Hi Jas
A hug and a welcome to the secondaries āclubā - membership not desired. We all know how you feel right now and totally understand what you are going through. I remember when I was told last year - it was the last thing I expected and the sadness is (and still is) my overriding emotion. However, as the other lovely ladies have said, you do adjust and start to live the new ānormalā I also had chemo last year, but a different one to you and from what the others have said Xeloda is very do-able and better tolerated than other chemoās. I hope it works for you and you also have bisphosphonates for bone strengthening. Give yourself time to adjust - it all is so new - and please come back for advice, support and rants - this is the right place and I certainly would have found everything much more difficult to cope with if it hadnāt been for these forums.
Take care
Nicky x
thank you so much for your responses to my email. I feel very reassured that there is support out there and most importantly people who really understand what it is like to be in this situation.
I am on Xeloda and its good to know its the most do-able chemo. 2nd day of taking this and hopefully all goes well after. I had my reconstruction in April 09 and had the tummy tuck option, which was the most painful experience ever. I started having back aches after this surgery and following several trips to the GP I ended up seeing my oncologist who suggested a bone scan etc and here I am.
just as I thought i was okay and getting on with my life, having met a new partner, this hits me. I just started a new job as well at a university and I have a strong feeling that although i am hearing the right words from my manager, about support and my health coming first, I think she would prefer me to leave. I am in a very stressful job and I am not sure I can cope and get the support from work, esp as I am also going to have so many hospital appointments every few wks. wth my family and friends support, I have pretty much decided to leave my job.
I need to concentrate on me and I am sure things will fall into place.
I am sure i will have a lot of questions and moments of rants and raves.
But I feel much peaceful today and am spending a day with my family and my partner. Really looking forward to it.
Hi Jas
The shock will be with you for quite a while as will a lot of other emotions but life does seem to pick itself up and make you get on with it! I hope you had a good day with your family and friends. I found that the 1st meeting after the dreadful news had been spread was the worst - emotional, a lot of explaining and too much damn sympathy One of the things that progression of BC has made me do is live every moment and enjoy every day and have as much fun as you can! Certainly gives me an excuse!
Regarding finances there is a wealth of information on here if you ask the questions as a new topic but just to say you are covered by the Disabilities act if you have BC so that may help in your situation. Your boss may not like it but there are rules and regulations they should stick to to help with anything related to treatment etc that youāre going through. Also you can apply (and should get) Disability Living Allowance once a secondaries dx has been made. The scary bit is that your GP/onc/MacMillan Nurse has to sign a DS1500 form to back up your claim which basically says you have a terminal illness and are not expected to live for more than 6 months. However there are many ladies on here who have applied and are still alive many years after. It is not means tested and you can claim it even if you are able to work. This may be worth looking into as it can help with your financial situation.
I hope Xeloda is treating you well, with few side effects, and it gets on with the job!
Nicky x
Just saying hi, and hoping you are getting all the love and support you need at the moment. As others have said, you will find a new kind of normal as time goes on.
In regard to your job, I wouldnāt make any decisions now. I carried on working for a year and a half after my diagnosis of lung mets, and my employer did make adjustments so I could fit in appointments.
Best wishes.
Nicky
thanks for your lovely responses. you are right its so draining having to deal with it but also having to explain to family and friends around you. I have come to a stage where i just say so when i cannot deal with family/friends.
thanks for the information on the disability living allowance. i wasnt even aware of its existence. i will definitely look into it. My employer has finally talked about being flexible and accomodating - i am now on reduced hours and also can work from home when things get too much and i cannot travel into work. so far so good, lets see how that pans out. I dont love my job, so its only a means of finance for now and also something to keep me occupied and not go out of my mind being at home. perhaps its time i took up some hobbies
xeloda so far has been okay apart from the nausea and vomitting. it started a few days after starting xeloda and its awful. perhaps my body will adjust to it eventually - cant bear the thought of being sick for 2weeks of my cycle.
can anyone tell me how they feel during the week off xeloda during their cycles? do you feel normal? i.e whatever normal is in this time and space.
also wanted to know how it works out. if one responds to the treatment then is there a possiblity of having the all clear - or am i just wishful thnking. being so new to this, i have so many questions and am not seeing my oncologist for while.
Hi Jas
I donāt know about Xeloda but if you start a new thread about it youāre bound to get some answers, thereās quite a few ladies who have had it or are having it.
With regards to treatments etc I think it depends how you respond. I had some half way scans when I had FEC and it was doing itās job, ie shrinking my local recurrence and no spread. The bisphosphonates Iām on for bone strengthening also showed to be working as the boney areas are getting stronger. I had another set done after treatment has finished and then 6 months after that. I think you can get a NED (no evidence of disease) especially with soft tissue spread but with bone mets I suppose it will always show - the damage I mean. The main thing then is to be stable and no progression. Your onc would monitor you after chemo has ended and decide any further treatment. Iām on hormone treatment as Iām highly Er and PR +ve so I hope this holds things at bay for as long as possible. This isnāt intrusive so Iāve been able to get on with most things since going on them except for the aches and pains that we all seem to get with them.
Hope you pick up soon and donāt feel so bad, maybe an increase of anti sickness tablets might be needed or your dose adjusted? Donāt suffer in silence - let your BCN know and Iām sure you can be helped.
Take care
Nicky x
Hi Jas,
As the other ladies said we are so sorry you had to join us,but we are here to help in any way we can.
I was dx with lung mets in March and like you, I was devastated but you just have to pick yourself up and try to get on with it, it really does get easier.
I have just completed 6 cycles of Xeloda and I found it so gentle after my chemos for primary.Everyone is so different but or me I had few side effects. My feet suffered and you MUST moisturise them, the ladies on here recommended udderley cream and I use it every morning and night it really does work (and smells lovely). The only other side effect was a gippy tummy but again in six cycles I needed about 4 tablets, so it was no big deal.
Whils`t on Xeloda I went been to Tenerife, Portugal, Eurodisney and Sicily for holidays and really felt good.
I have had a slight progression on it and have just had a break and have had scans, so will see my onc on Monday to see where we go from here.
I do hope the sickness has gone ,did they give you tablets for it?
and I do hope it works well for you.
Take care,
Janx
Hiā¦I was given tablets for any nausea or tummy probs but Iāve been lucky to have very little side effects. Please contact your chemo nurses or the Onc about the nausea as your Xeloda dose might be able to be lowered.
x
Hi Jas, just read your original post and yes I am in this club too! I had a wle in January and lymph node removal - sailed thru that then surgoen decided he needed a better margin so had 2nd op early March - had so much pain after that in ribs, back and bum cheek they did a bone scan and found secondary cancer hot spots in all those areas plus hip. I had had 2 chemos by then called FEC and have just finished my 6th and final chemo. Was so scared with bone diagnosis but now take a daily tablet called Bonandrin (its a biophosphate) and although not curable its very treatable so dont panic! I now know of 2 people who have lived with it for over 20 years and counting so its not necessarily as mind blowing as its seems. I have another scan November time to see if its progressed - if it has there are more options such as radiotherapy to the areas etc. Am happy to let you know how I progress. Hope you now know what treatment is planned for you and you are feeling more positive - keep in touch and let us know how its going lots of love to you xdebbiex
thank you for your emails. very reassuring as always and always good to know that there is support from someone who actually understands what its like to be in my shoes.
I had a bit of a blip last week, when was meant to start my 2nd cycle of xeloda. My blood test showed low red cell count and platelets ,so had to have a blood transfusion. Silly me thought it would take an hour and I had planned to go into work that day. it took me 6hours to get 2 units and I must say it was worth it as I feel much better for it. I start my 2nd cycle today and hopefully wont feel as sick as I did first time round.
I really love travelling and it was reassuring to know that some of you have travelled around europe. I am planning to go to cornwall in september so really looking forward to it.
Work has been okay, but there is still that uncomfortable, back of mind worry that my manager is not exactly 100% happy. We talked about part-time hours, which I think would suit me better. I think i would be happier with that too and take some time to do my own thing in my spare time.
I am also having some counselling and was very pleased with my first appointment as the counsellor was great. Somtimes its great to talk to someone who is objective and not connected to my situation.
next step is to join some network and get as much information and s support.
One of the things that progression of BC has made me do is live every moment and enjoy every day and have as much fun as you can! Certainly gives me an excuse!