I have IBC

Thanks Sue,  I see ladies all the time with what I think could be "chemo" hair but I'm only guessing as it could be a "wash and wear " style.  I lost all my hair on day 18 of my first of 6 EC chemo sessions.  I was surprised as I had very thick long hair.  When I think of it, my hair had started looking "dead" and dry looking and when it fell out, there was no follicle on the end of the hairs so I think the hair actually died on day one, and took 18 days before it started falling out.  I never had Taxol and my hair started coming back about 6 or 7 weeks after the last chemo, very slowly.  I am blonde so I'm wondering if there is a plant based dye that will cover the grey hair.  It's good to hear everyone's input on the subject as it affects all of us.

My best wishes to you Sue

Hi Wendy

Get your hair styled and go dramatic. Play with colour, but make sure it's a plant-based dye. I dyed mine when it grew back and the colour held. All I had done when my hairt started to grow back towards the end of my AC pre-surgery chemo was get my remaining hair (I only lost about half my hair. I looked like an old bloke!) clippered off. It continued to grow during my weekly Taxol. I got a really cute cowlick and some curls behind my ears that I kept getting cut off. If you don't get it styled it takes on the look of what I call chemo hair.

What this all makes me realise is that, while we all share many experiences, there are still some things that happen to each of us uniquely. The beauty of sites like this is that we can share this information and cover the gaps that occur in the medical websites. I couldn't believe it when my hair started to grow back and found out through some very specific Googling that it is not unknown.

I've kept my hair short as it feels so clean and cool, and it's so easy to take care of. I also like the drama of the style.

Very best wishes

Sue

Paula

Sorry to hear you're down at the moment.  I hope the BCNA seminar didn't pre-empt this by seeing a lot of older women there & talking about survival rates etc.  I so wish I could have made it but not to be with a sick little girl.  Like you, my other breast cancer friends thought the speakers & the subject matter were excellent.  Did IBC come up?

I too feel really cheated at times as I still consider myself young at 47 & I too want to be around to see my little 6yo grow up.  I think on the whole I feel more positive than negative & get such a lot from meeting with & talking to other women with breast cancer who are going through the same as me.  This wonderful support can never be underestimated.  My family however say it's ok to feel sad sometimes as it really takes a lot of energy to remain positive all of the time.  Luckily the happy times far outweigh the sad times.

I have a good feeling about my prognosis.  I have heaps of faith in my medical team & I feel certain my cancer was caught early so I have lots to be thankful for.  At times though, my aching arm, saw feet & hand joints make me feel awful but tomorrow is always another day.  I can't say however that I never wonder how many years I have left or will the cancer return?  I just feel thankful for a loving & supportive family and friends who let me express this whenever I need to & have a cry with me.  Luckily I'm managing more & more to push this to the back of my mind & by keeping busy, I'm not dwelling on it nearly so much.

Only 8 rads to go for you.  Yahoo!!  You will get so much more time back in your day.  The commuting & waiting around certainly takes its toll.  The fatigue will probably catch up on you at the end but it soon settles.  I had a  camping holiday booked for Easter as my reward at the end of my major treatment.  It was just the carrot I needed & I had a lovely relax spending special time with my family.

Anyway, would love to meet up with you soon.  I can always drive to your side of town if that's a little easier with you with your 2 littlies.

Take care.

Terri  xxxx

Thank You Marian, I think I will try cutting off the curly bits for now and see what happens.  I didn't know that about hair being like a baby's hair and that the dye will wash out.  My hair looks and feels like a granny's hair so maybe mine will be different.  I'm taking blackmores hair skin and nail tablets too so maybe that has helped the hair to be stronger.  I will look into things a bit more about the colouring of it as I'm in no hurry just yet while I have very short hair and some good wigs.  I will do some googling and see what I come up with.

Thanks Marion

 

A trim would be sufficient, I think the hair that has come through is still affected by chemotherapy and if you remove it, the next hair will be fresh and healthy, well that was my thinking as I started to get my grey fuzz while I was having Herceptin & after I shaved that off, my good hair grew pretty slowly until I finished my 12months course, then it took off, I actually miss my short hairdo! Regarding the hair dye I was told that the new hair is like baby hair & won't hold a dye, I haven't dyed my hair but one of my neighbourhood friends put a dye through her's pretty early on just to see and it just washed out next shampoo. Perhaps if you spoke to a hair salon they might have some advice about the different types of dye.

Regards Marian

Sorry to hear about the recurrence in your lymphnodes Keli. Can they give you radiation to that area if they can't do surgery? Surely they can do something. I'm still in radiation now (only 8 more sessions) and I'm having my superclavical area radiated as they found cancer in one lymph node in that area when I had my surgery.

I totally agree that people and Australia need more information and understanding about IBC. Nobody has really heard of it, even my breast cancer friends I have met. I'm always having to explain myself why I had chemotherapy to start with.

How many of us are on the "IBC support" mailing list? Just curious to know. It is mainly women from the USA and can be overwhelming to read some of the stories and situations but also very helpful to know the realities and nature of this type of cancer.

Today I went to a BCNA seminar/forum about breast cancer and after breast cancer in Brisbane. It was very good and the speakers were excellent. There were so many of us and I felt sad and angry (hormones are crazy at the moment)  thinking I'm only 35 and if I can live five years without recurrence my prognosis will be better and then if I live past ten years it will be even better......but I want to live another 50 years plus and I'm really scared that this may not be a possibility with this cancer. Having a very down time at the moment thinking about this. I so want to see my children grow up. xoxox

Sorry to hear about the recurrence in your lymphnodes Keli. Can they give you radiation to that area if they can't do surgery? Surely they can do something. I'm still in radiation now (only 8 more sessions) and I'm having my superclavical area radiated as they found cancer in one lymph node in that area when I had my surgery.

I totally agree that people and Australia need more information and understanding about IBC. Nobody has really heard of it, even my breast cancer friends I have met. I'm always having to explain myself why I had chemotherapy to start with.

How many of us are on the "IBC support" mailing list? Just curious to know. It is mainly women from the USA and can be overwhelming to read some of the stories and situations but also very helpful to know the realities and nature of this type of cancer.

Today I went to a BCNA seminar/forum about breast cancer and after breast cancer in Brisbane. It was very good and the speakers were excellent. There were so many of us and I felt sad and angry (hormones are crazy at the moment)  thinking I'm only 35 and if I can live five years without recurrence my prognosis will be better and then if I live past ten years it will be even better......but I want to live another 50 years plus and I'm really scared that this may not be a possibility with this cancer. Having a very down time at the moment thinking about this. I so want to see my children grow up. xoxox

 

Regarding your new hair, mine came through like that & I was told by a hairdresser to have it shaved off which I was hesitant to do, but I did and my new hair came through nice & soft & blonde. Thought I would let you know, it only added a month or so to my baldness. I am 2 and 1/2 years out from diagnosis and my hair is now down to my shoulders & my curls are starting to go.

Regards Marian

Hi Keli,

Its good to see that you have OCD.  I am a bit off the same.  These secondary metastasis to the bone is where IBC and Breast cancer go to sometime in our fight for survival.  My tumor is in my left ilium with ? on spread to the right as the last bone scan approx 8 weeks ago.  The problem with secondary metastasis is the location in which bone in goes too.  Mine is nestled in on the bone marrow so they can't cut this one out.  Living with Cancer and knowing that their is no cure or treatment is difficult in the best off times.

Bone pain is more constant and to get some normality back in my life I have now opted for radiation therapy which starts in the next few weeks.  This is not treatment but pain management I am told. 

I am off for my next CT scan to see if any sign of mets to the organs tomorrow morning.  To be truthful, if I get through this one, I am sure I will be cruising for another year. mmmmmmmmMmmm.  Oh, yeah.  Sorry, should not get too excited as the news could be detrimental. 

Anyway ladies, nice sharing your stories and listening to mine.  I am not very good when it comes to writing normally.  So, I want to send Blessings to you all and wish you longivity and happiness.  Sue

Thank you for that Information Marian.   I too am hesitant to have my new hair shaved off even though I don't like it, I feel it's much better than none. I wonder if I just had a bit cut off it, would that do the trick? What is it with the shaving the hair off that makes the curley hair go straight?

 I was told not to dye my hair after the chemo but I could later on.  What does that mean?  How long do I need to wait?   Should I be looking for a gentle dye if there is such a thing.Thanks for replying to me.

Wendy