Secondary bone cancer

Hi Chrissy,

I'm coming up to 3yrs on the 28th October for my inflammatory breast cancer.

I do have a portacath and it is still in, they will not remove it for 5 yrs.

It was great through chemo and causes no problems now. I get it flush every 6 weeks with the community nurses as I am an hour away from my cancer hospital.

One of the reasons for mine is I have Scleroderma a auto-immune disorder that causes thickening of the skin so they had trouble accessing my veins and they will not remove it till I reach the 5 yr period.

Hope your treatment is going well and you aren't feeling to sick, hang in and think positive

cheryl

Hi Wendy

Thank you for your kind thoughts.  My chemo this time around is less aggressive so I am coping much better.  I have it once a week for 3 weeks, then one week off.  I try to think of my chemo day as my day of relaxation when I can just sit back and relax in a comfy chair while I am been looked after by lovely ladies, and also have morning tea ir lunch served to me. 

When I was first diagnosed they told me that I had only had it about 2 months at the most, so I am so glad that I didn't leave it any longer to see the doctor otherwise it could have already spread further. 

I hope you are feeling much better by now and enjoying your life again.  I would really like to hear about things that you have been through.  Because IBC is rare, when I was first diagnosed I felt alone as I couldn't seem to find anyone in the same situation to relate to, and as much as it isn't good to hear there are others out there with the same disease, it is a help to be able to talk to someone else.

On a positive note, I am so enjoying seeing sunshine that has just appeared, we have had too many cloudy days, the sun really brightens me up.

Hope to talk soon.

Cheers,

Dallas

Hi Dallas,

I was first diagnosed July 2010.  I had held off going to the doctor for at least a couple of months because I was "too busy" to have a heap of medical appointments. Not sure if it made a difference or not. I feel for you having to have Chemo twice.  I always say I couldn't do Chemo again, but then things are different when you really don't have much choice. The good thing was that the  staff in the "chemo Lounge" were fantastic.  They worked so hard and were all very caring. I will never forget them but really don't want to be sitting in those nice big chairs again.  I'm sending you healing thoughts because people sent them to me and so far it's worked. 

Will keep in touch

Wendy

Hi Wendy

I am starting my 6th cycle of chemo for the 2nd time in 3 years for IBC with secondary in the liver.  I also have my treatment at Cabrini Brighton and think everyone there is just so wonderful and supportive.  All is going well, but will know more when I have my next CT scan at the end of this round.  I am really glad that you decided to have your treatment.  When were you first diagnosed?

I hope you will keep in touch.

Hi Chrissy (and everyone else).

You have all taken me back a while.  I was diagnosed with IBC in December 2008 and wasn't given a good prognosis (6 mths at the most).  However, here I am now almost 4 years after diagnosis and with none of the nasty stuff detectable right now.

It is definitely a journey full of the ups and downs but one that will leave indelible memories of the wonderful people you meet, the strength of family (that you never thought they had), the love of friends and a new appreciation of why we need to slow down and 'smell the roses'.

For me, I had chemo, radium, mastectomy (removel of lymph nodes), herceptin and a trial drug (neratinib).  After every treatment I was in hospital, blood transfusions etc.  I now have ongoing damage to my digestive tract which makes my job as a teacher rather entertaining sometimes - I laugh at the students - they know not to stop me going to the bathroom!!

I learnt early on to trust my team and not to become too obsessed with the names and definitions etc. of the cancer.  (I have it recorded somewhere but could not give you the names of the drugs etc. that I was given).

Enjoy the new found relationships, the enhancement of the ones you already have and the support of people like the ones on this forum.  There are many positive aspects of cancer and people continually surprise you with their thoughtfullness.  I truly wish you all the best, contact me anytime.

Luv ReenieBabe

I don't have IBC but like you was diagnosed with breast cancer and within a week found out I had widespread bony mets. A huge shock, so much that I spent every second of the day looking forward to it ending so I could forget everything while I was asleep.

Had mastectomy and total axillary clearance, radiotherapy to bony bits that posed a problem - one close to spinal cord and one in hip that was likely to fracture - then Taxol (and Avastin on a trial).

Every now and then whatever treatment I'm on stops working and I try a new one, there are heaps of treatments to try. I'm now on Xeloda, an oral chemo agent.

I am now 5 years out, and can say you kind of get used to the uncertainty. I can definitely say that the past five years have in no way been the unhappiest years of my life. I've had lots of fun, and while a bit tired, continue to work at a fairly high level job 4 days a week, which to me is important. I know other people have other priorities, but whatever works for you!

The internal thoughts that allow people to cope in such a dastardly situtation vary widely. I've done lots of reading! For me what works best is to tell myself (and others) that I will be able to cope with whatever life throws at me, and feel proud about that.

So when I go for a scan or result, I try not to rely on a 'good', ie no progression of my disease, outcome. If this is the case, that's great, but rather than put all my psychological eggs in one basket, I tell myself that I don't need a good result to feel OK, and that I will cope with whatever result I am given.

My cancer is yet to spread to other organs, so I suspect this will be another great challenge. But I'm fairly confident I'll be distressed for a while, and then settle into the new 'normal'.

Don't know what will work for you but offer this strategy as an option.

Thinking of you

Kerri

The first thing I noticed was that you wrote your blog at 3.40am!!  Are you in the dexamethasone stage?  Takes me back.  I reached 2 years post diagnosis on the 7th September but who's counting?  I sense your fear of the unknown & the worry and can so relate to what you're going through.  I didn't have a portacath (they thought my veins were pretty good) but in the end, it was getting harder to find good ones.  My treatment (chemo, double mastectomy & radio) seems a lifetime ago but I'm still taking Femara & will be on it for 5 years.  I too live in Brisbane & I remember feeling quite isolated when I was first diagnosed as no one else seemed to have IBC.  To date, I still haven't met anyone face to face, only via this website.  It was a godsend to find this site & realise I wasn't alone.  When you get an opportunity, do take advantage of all that Choices at the Wesley Hospital offers to women with breast & gynaecological cancer.  I not only met some beautiful people there but also took advantage of wonderful classes & treatments they offered - pink pilates, massage, councilling, relaxation & meditation classes etc.  It's all free & the people that run it are truly amazing.  I wish you all the best  over the coming months.  The treatment is gruelling but so worth it in the end.  I too had TAC.  Please feel free to ask any questions of me & I'll try to help you.  Terri xxx