I have IBC

Keli, so sorry to hear about your setback. I'll be thinking of you, so sad you have to do chemo again.  That is the worst thing.   I'm keeping my wigs in the hope I won't have to wear them again.

 I too was told that all they could do for me was to try and prolong my life with treatment.   I'm having tests next week and already getting nervous about it all.  

We plan to go caravaning to Cairns this winter and I don't want anything stopping me.

All the best Keli, keep us informed.

Love Wendy

Hi Keli

I can't believe what a strong person you are.  I've just reread all your posts & although all of this terrible stuff has been going on for you, there always seems to be a bright side as far as you're concerned.  That really sucks that it has reared it's ugly head again & you have to go through a third round of chemo.  Are you still working?  I hope not.  I really don't know what else to say other than my heart goes out to you.  You are truly remarkable.

Terri

xxx

Happy Birthday Sue for last week and many more to you.  You are truely and inspiration and I loved reading your post.  We are doing a big trip in about 3 months time in our caravan.   There are 2 times, now and too late. So it has to be now.   Happy travels.

Wendy

Hello to you all,  I am slack so slack that I have been so busy getting ready for my next adventure over the last 4 months that I had forgotten what a computer is. 

I bought a toyota coaster and will be heading off around Australia once this weird weather has cleared up.  I am slowly going through my bucket list as I know one day my time will be up according to my last Oncologist who can not understand why I am still alive and breathing.  His words was to stay on those pills whatever you are taking as that is what is keeping me here considering I had around 12 months to live after mastectomies in Jan 2007.  I have made 5 years in January since hearing those words.

To those who think I am an amazing person.  I am just like you all.  NOT ready to Die.  So, I decided to LIVE and not even consider the words Stage 4, Palliative Care, No Cure.  I have a letter from my oncologist dated April 2011.  I have just hit another milestone on Friday 23 March.  My Birthday.... Yeah.  Yippeee.... I now work on Christmas 2012. 

So, I am almost ready to hit the road Solo.  Me and my dog.  I am going to write a book to help partners, family, friends and anyone who has anything to do with someone with cancer to understand that we have cancer but we are Alive.  Don't take away our thoughts, our dreams and treat us like we are fragile.  WE are people who need to feel we have a place on this planet.  Especially some issues I have had with my oncology team.  I researched and made choices, not just took what the doctor ordered.  If I had just listened to those I went to before my diagnosis and not listened to my body. I would not be here now.  I am sure this goes the same for all you warriors.  Life is short but don't shorten it faster than we are prepared to lose that control and give up on the battle.  Have dreams and do it.  Don't put things off.  Take the opportunity and don't think you are not capable of doing it.  Because you are....... Don't listen to people telling you that you can't do it, because you can and lastly when you have done it, BRAG about it as those that thought you would fall will see the strength you have within.

So, tonight I say farewell as I will be on the road in the next week or two, living the dream.  Doing those crazy things I have been planning.  My Oncologist will see me for the last time tomorrow 26th March (at least 6 months), my husband who can't believe I am leaving him to go walkabout, my GP who made me have a flu vac as he did not want me contracting the flu in my journey and is the best GP a cancer girl could have as he see's this determined fighter within and believes in me. 

My journey starts from Townsville, heading up to Mareeba where I will see my fossicking friends for up to a week, then move on slowly around the top end , back towards Broome, Kalgoorlie, Adelaide, Melbourne then over to Tasmania for a few weeks before coming back to Melbourne, Sydney, Brisbane and spending some time Central Queensland before heading back slowly up the coast to Townsville.  If you see my bus around, the windscreen stickers have the pink ribbon either side of the words NOT DONE YET, come over and say g'day. 

Then it will be another batch of scans.  Not sure if I want these anymore as since my last post the tumor in my ilium has stabilised (thanks to blue green algae).

Pet scan picked up a spot in my right lung and left shoulder blade but my oncologist was not concerned about them at all. They are only spots and I'll just keep on taking the algae and have not thought about them as, I do not have any other symptoms at this time.

I believe its our stress levels and our thoughts that contribute to the rate of growth of our tumors.  Also stress, trauma in our everyday life that feeds the cancers.  So, from me to you, stop thinking and start living.  God Bless to you all, Live in the moment. Will post on my return once I have settled in and sitting in front of the box..

Sue 

 

Hi Keli

I have had lumps under my left arm a few times which got me worried & off to see the doctors but just turned out to be fatty tissue/groups of muscle/collection of lymph.  Not quite sure which.  Hoping this is the same for you.  We just can't help being ever so vigilant these days.  Everything else going pretty well.  Saw my oncologist last week for 6 monthly checkup & he said that at 16 months post diagnosis, I'm doing better than he could have ever hoped for!  Got to be happy with that.  Thinking of you.

Terri  xxx

Hi Everyone,  After having stage 1V IBC and going through, 6 months EC chemo, left mastectomy and aux lymph nodes, and 5 weeks of radiation, my latest scans  say " No evidence of metastatic disease"  amongst other minor things like fatty liver and kidney cysts. which I didn't know about.  I'm over the moon about it and amost didn't want to write this for fear of jinxing myself and I know some of you including Kelli who has been going through difficult times.

But then I thought  I want you all to know that there is HOPE, even at stage 4!

I had white spots all over my lungs and there is no mention of lungs on the latest report.    8 of the 9 lymphs removed were full of cancer so I expect that the radiation killed any others off there.   I have had many people praying for me, I take lots of vitamins and supplements including the maple syrup and bi carb soda.   I was told that  stage 4 IBC would give me 18-36 months of life depending on treatment.  I had everything they offered me including the Arimidex and still on it of course.  I honestly never dared hope for NED.  I feel like I've crossed over from the land of the dying to the land of the living.

My prayers are with you all to get a good test result too.

Love Wendy Diagnosed July 13 2010

Hi Everyone,

I was diagnosed with IBC on the 28th October 2009. I had the usually treatment Chemo, LH Mastecomy, 12 weeks Taxol Chemo, 5 weeks of radiation.  I received clear margins after surgery.

I also have an auto-immune disease Scleroderma, my body makes to much collagen resulting in have tight skin this disease is also internal.

So when it came to my IBC there where lots of doctors involved, the main concern was with radiation as it cause fibrosis and so does Scleroderma, so after 2 drs agreeing and 2 drs disagreeing with radiation I went ahead and had radiation. I think it was more sensible to treat cancer and worry about the skin thickening later on, so far I have had no problems, although I have had physio every week for 12 months and now slowly getting visits furrther apart. This was to try and stop the skin binding down and to keep movement of the chest wall. I also can't have reconstruction because of the Scleroderma. I have only had Scleroderma since 2007 and this is an inflammatory disease so it makes me wonder if they are connected?

I do not take any supplements for cancer as I am on a lot of medications already and any thing new has to be approved by my immunoligist as my immune systems is over active, I try and follow a good diet and excerise.

You all have wonderful stories and we all keep plodding along day by day to the best of our abilities and we must listen to our bodies and rest when needed.

Cher

Hi Everyone,

I was diagnosed with IBC on the 28th October 2009. I had the usually treatment Chemo, LH Mastecomy, 12 weeks Taxol Chemo, 5 weeks of radiation.  I received clear margins after surgery.

I also have an auto-immune disease Scleroderma, my body makes to much collagen resulting in have tight skin this disease is also internal.

So when it came to my IBC there where lots of doctors involved, the main concern was with radiation as it cause fibrosis and so does Scleroderma, so after 2 drs agreeing and 2 drs disagreeing with radiation I went ahead and had radiation. I think it was more sensible to treat cancer and worry about the skin thickening later on, so far I have had no problems, although I have had physio every week for 12 months and now slowly getting visits furrther apart. This was to try and stop the skin binding down and to keep movement of the chest wall. I also can't have reconstruction because of the Scleroderma. I have only had Scleroderma since 2007 and this is an inflammatory disease so it makes me wonder if they are connected?

I do not take any supplements for cancer as I am on a lot of medications already and any thing new has to be approved by my immunoligist as my immune systems is over active, I try and follow a good diet and excerise.

You all have wonderful stories and we all keep plodding along day by day to the best of our abilities and we must listen to our bodies and rest when needed.

Cher

Hello, I'm new here. I was diagnosed with IBC the week before my 47th Birthday last year.

I was diagnosed after a core biopsy (Never doing one of those again if I have to remain awake).

I had 6 rounds of chemo 3xfec, 3xtax.

My daughter was 7 last christmas, and wanted us to do the whole roast turkey, glazed ham - but I had chemo on christmas eve and my mouth had ulcerated so hopefully this year we will do the feast.

After the chemo I had 35 rounds of radiation with bolsts. I had all the ususal tests after this, and on the same day met with my surgeon to discuss what was happening next. Well I was blown away. I've gone from being told (by my first surgeon) that I would need a double mastectomy with no reconstruction. To being told I that the cancer was gone and there would be no surgery.

It was a very confusing time as my Dr was insisting on surgery and the surgeon was refusing. I've talked with the Dr this week and she says that If they operated on me it would be like opening a can of worms and I'd end up looking like a dogs breakfast. Such technical descriptions, ha ha.

My area of radiation is so large that they wouldn't have a hope of salvaging enough skin to join me back up again. I'd need a huge skin transplant. I am very small, so I don't have any stomach to transplant.

I've been taking Tamaxathan (can't remember the spelling), as I'm eostrogen positive, but I was waking every hour during the night with hot flushes, and I was very tired and cranky. they have switched me back to the monthly injection of Zoladex which while not perfect, is tollerable.

I worked through my chemo, but had to have three months off with the radiation, because as you can imagine, I was on Endone and Oxycontin and panandine and red raw and bleeding.

Anyway I'm back at work and doing physiotherapy to try and regain arm movement. Thank god for the berlie front opening bra my breast nurse ordered for me.

So I'm just going to have to play the waiting game.

Angela

I know what you mean about the dead-looking hair thing, Wendy. I was told that my hair would fall out by my second chemo treatment. I remember getting a tingly, sore scalp for about a week before the treatment, but it didn't fall out. I remember going in to see my onco and saying, "Look! Hair!" His comforting response was that it would fall out soon.

I kept it for another week after that by not touching it - didn't brush it, didn't wash it. Luckily, this was midwinter. I can remember sitting having a coffee with my husband and watching hairs slowly drift away one by one and thinking, "You silly moo! You're just prolonging the agony." So the next day I got into the shower and rubbed it and rubbed it for about 20 minutes. Every time I looked at my hands they were covered in hair that looked like a Jex pad when you've left it in water too long. I can remember taking the long, long walk to the mirror to see how I looked and being surprised to see how much was left. The really strange thing was how strong and jubilant I felt. I was so excited when I rang my husband to tell him what I'd done. Even weirder was his reaction. He was as excited as I was!

The next morning my darling husband flooded the bathroom when he had his shower. I thought I'd cleaned out all the dead hair, but apparently not. So there's a side-effect of chemo not much spoken about!

Best wishes

Sue