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Angiosarcoma

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Re: Angiosarcoma

Hi! So sorry that you've had a recurrence! There are many treatment options, but too many physicians are unfamiliar with angiosarcoma! We have a number of very long term survivors with secondary AS of the breast. I hope to see you on our site! You would laugh, there are at least 20 people awaiting your arrival on the site :-) they were all watching and waiting to see if my post would make it past the moderator as at first they ( the moderators) thought I was trying to advertise something LOL. Sending love, strength and all the best!
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Re: Angiosarcoma

Just adding another chapter .... on Monday morning I suffered an episode of TGA , ( transient global amnesia ) and ended up in the local A& E scaring my poor hubby half to death . I have no memory of Monday morning at all , it is wiped from my memory banks .Apparently this is scarey but not serious , rarely re-recurrs and is caused by trauma and stress ..... brain going into overload I guess !!
Feel as if I have been whacked with a wet haddock , but coming round a bit today although Monday morning is still a complete blank !!
Hope everyone else is OK .
Hugs ,
Jill xxx
Member

Re: Angiosarcoma

Hi Eileen ,
I am so sorry to hear the sad news of the death of your daughter , that must have been so dreadful to bear . Yes you are correct, I have secondary angiosarcoma , caused by the radiotherapy treatment that I received for breast cancer in 2009 . Hard to cope when the treatment meant to save you is actually killing you . Mine is very aggressive and has returned in my mastectomy scar and other breast after only 4 months , with little treatment to offer apart from surgery at the moment .
Thank you for the heads up on the FB page , I shall look out for it .
Hugs,
Jill xxx
Member

Re: Angiosarcoma

I guess I need to be very careful with this post as I got an email saying they rejected the last one as they thought I was advertising something! My daughter died in 2011 of primary angiosarcoma of the breast.  If I understand correctly, you developed angiosarcoma due to radiation of a previous breast cancer.  Our facebook page, " Angiosarcoma Cancer" has hundreds of members from all over the world.  They are  fighters and survivors of angiosarcoma or caregivers of someone with AS.  We have a number of survivors of secondary AS of the breast due to radiation. We even fund our own research via cycle for survival, and numerous other events as angiosarcoma is, as you know, very rare and being an orphan cancer is not funded.  I wish you all the very best in your fight and know that you are more than welcome to our FB page for lots of information, latest studies, love and support!  Eileen

Member

Re: Angiosarcoma

I had long hair too Tess , down past my shoulders of which I was very proud !! I knew my chemo would cause it to fall out , so I went to the hairdressers and said please cut it ,short like a boys . She was horrified and tried to persuade me against it , so eventually I said I was having chemo and it was going to fall out !! She was gobsmacked , but immediately set to with the scissors . She told me years later this had a real effect upon her . About two weeks after my first dose of Epirubicin , I started to get clumps of hair on my pillow , and lumps in my comb !! I decided , being vain , that I could not bear to be seen with bald patches , as if I had ringworm or something ,so got my lovely hubby to shave it off with hair clippers . I usually did his with those on a number three !!
I did get a wig but hated it , so always wore big scarves tied into turbans , with fancy knots and brooches pinned into them . Large and showy !! I hated the little caps and hats the cancer specialists seemed to provide felt they made me look like a victim , I wore my headgear with pride . LOL . Gots lots of compliments ... eventually I also lost my eyebrows , eyelashes , which was horrid , but also all my body hair etc . so some bunuses !!!!
What cocktail will you get ? I had accelerated Epirubicin and Capecitebine (sp ) as I was on the Tact 2 Trial , thank goodness I was as they followed me up for longer than normal , which helped my Angiosarcoma to be spotted !! Goodness knows how long I would have ignored it for after my mammogram came back clear if not !!!

Have had friends call in today , which was nice , lovely to see them again , but was shattered after they left , needed a few zzzzzzzzzs to recover . LOL .
My armpits seem to have been wrecked with my surgery on both sides , was just thinking as I washed today , no showers yet , due to stitches , that shaving will be fun in future ...NOT !!!

Lucky you to live near the beach , I really envy you that , whereabouts are you ? My hubby comes from Whitby , so we do sometimes get back there and enjoy the beach .

Take care and keep well .
Hugs,
Jill xx
Member

Re: Angiosarcoma

Hi Jill, sorry that you are in a lot of pain just wish I could take it away for you.  Three weeks is a long time to wait for your results but I am sending good vibes and hope time does not stand still. With the waiting it seems to be forever but normally time flies by and we never have enough hours in the day.  I am having to wait just over a fortnight for my chemo and have done about 10 days now but it does seem forever.  It starts on the15th. I have to pluck up courage and have my hair cut shorter and it seems silly but I really don't want it cut. I keep thinking I won't have it cut and nothing will happen.  I know if I don't have it shorter I will lose it even quicker. I'm pathetic really but it is like an admission that I have cancer.  I know I have but it will be like telling the world.  I am having the cold cap but also got an appointment booked for a wig. My oncology nurse gave me the information on the cold cap and then promptly booked me for a wig appointment.  I did think was he trying to tell me something.  Probably my imagination.  I know two of my drugs on the chemo cocktail (I wish) I will definitely lose my hair and the 3rd is a possible. Sorry about the negativity but occasionally it comes in waves a bit like the tiredness. On a lighter note my new trick is putting my tops on back to front.  I have been doing this all week.  Maybe I should start a new fashion.  One thing my friend noticed that with the 4 nodes gone I have no batwings on that arm. I did think about designing a one armed jumper to show it off. This morning we went on the beach with my daughter and two friends and our three dogs. My daughter is so bubbly I felt so happy and had a fabulous time.  I forgot all that had happened and what will be happening.  It was wonderful. My hubby (I now call him Pingu due to his broken hip as he walks like a penguin) and my friends hubby who has had knee op hobbled on the promenade while we girls went down to the sea. The dogs swam and had a brilliant time. After all this treatment I have this to look forward to plus a really good holiday. Someone said you have to give up a year of your life. I will do that and then get my life back.  Knowing me though I will still make it to the beach no matter how I feel.  To me it is like taking medication to watch the dogs and us having such fun and a good laugh.  They keep joking saying they will be chasing my wig down the beach.  That should be a sight for sore eyes but good for a laugh.  Tomorrow I am going shopping with a friend so that should be good.  I have a knack for finding bargains and have loads of clothes but can still find room for some more.  I have a lousy memory but I can remember almost all the things I have bought and how much they cost.  Weird that as someone last night said what did you have for dinner yesterday and I truly couldn't remember. This forum keeps me from losing the plot it helps so muchknowing we are all in a similar position.

I am thinking of you.  Keep in touch and let me know how you are getting on.  I hope I have made you smile at my antics which are even worse than before but they make me laugh.

Love Tess

xxxx 

Member

Re: Angiosarcoma

Hi Tess , good to hear from you . Sorry that you are so tired , please be careful in the car !!! My hubby has been great too , making homemade soup for me today , bless him !!
Am feeling sore and tender , this mastectomy seems more painful than the first , last time he took the chest muscle too , which left everything rather numb I think . I am also more bruised , black and blue all over , beginning to wonder if he let his students loose on me ...LOL Hopefully things will improve slowly but surely .
When do you start chemo ?
Hugs ,
Jill xxx
Member

Re: Angiosarcoma

Thank you so much Petal . Have to wait 3 weeks for biopsy results to find out if they need to do anything else .....why do we spend so much of our journey waiting for results ??? Wish they would quicken that part up to spare our shredded nerves !!!
Hope you are recovering from your rads and the herceptin trial is going OK .
Hugs,
Jill xx
Member

Re: Angiosarcoma

Hi Jill, so so pleased no further spread and that you have had your op and you are now home. I was thinking of you and wondering how you got on and suddenly had a light bulb moment Woman Wink (me before I start chemo)  and went into your thread.  I think that is what it is called as I am a newbie at this.  Home is definitely the best place to be. I am thinking of you as I know, as you do how painful it is but you will get through this but as you know it takes time and patience.  None of us appear to have a lot of that as time stands still and we just want to be getting on with things.  I took my son to work the other day and fell asleep at the traffic lights. He woke me up and I shot off and the car started bleeping.  I was going with the handbrake on.  Luckily I didn't break it. My body is telling me to rest but the brain or what I have that stands for a brain is ignoring the message. Today hubby cooked me roast beef and all the trimmings.  He is spoiling me as well as trying to build me up ready for chemo.  He cooked a joint which serves 14-15 so we will be eating a lot of beef this week in different guises. Keep in touch when you feel well enough.

Take care and get plenty of rest.

Love Tess

xxxx

Member

Re: Angiosarcoma

That's great news Jill about the CT scan. Have been thinking of you and checking this thread to see if there had been any update. Wishing you a problem free recovery. Hope you're getting plenty of rest and that everyone is looking after you. Sending lots of love and hugs xxx
Member

Re: Angiosarcoma

Hi Jill

I'm so pleased that the CT scan was ok, and that the surgery is done. Now you just need to concentrate on getting better. I can't imagine what it feels like to have to go through it again but you have been so strong to get this far, especially with all the waiting etc, that I am sure you can do this.

Take it gently and feel better soon Smiley Happy

Hugs, Emxx

Member

Re: Angiosarcoma

Hi Em , last few days have been a bit of a blur really !! Got to the ward for 7.00 am and CT scan result was through , no further spread thank goodness , so happy to go ahead with mastectomy and WLX of my scar . had my surgery on Thursday , bit woozy Friday ,with low blood bressure . Surgeon said he needed my drain to stay in till Monday , so could either stay in hospital till then , or go home and empty drain myself then come back Monday . so chose the latter . LOL
Hubby and I did this last time and coped quite well . Am quite tender and sore , this side more painful than last one to be honest ...but good to be home .
Hope you are keeping well .
Hugs,
Jill xx
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Member

Re: Angiosarcoma

Just wanted to say that I hope everything is going alright. If you had the mastectomy today I really hope all went well and wish you the swiftest recovery.

Take care, Emxx

Member

Re: Angiosarcoma

Hi Jill.

I'm really pleased they are moving quickly and keeping everything crossed that the ct scan doesn't show anything more sinister than the stuff you already know about.

If you do go in tomorrow then I really hope that everything goes well and I will be thinking of you. Stay strong Smiley Happy

Emxx

Member

Re: Angiosarcoma

Thank you Petal and Em , everyone has been so wonderful an supportive . Been for my CT scan this morning , they are trying to rush the images through to the surgeon , if they can get them to him today , he will do my mastectomy tomorrow ! If not next week on the 11 th . Am waitng on tender hooks for phone call from the hospital , to see if I am going in tomorrow . If so have to be there at 7.30 am !!! So much stress ...... aaargh !!
Hope everyone else is OK.
Hugs ,
Jill xxx
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Re: Angiosarcoma

Good luck for today Jill, will be thinking of you xx
Member

Re: Angiosarcoma

Hope all goes well tomorrow Jill.

Emxx

Member

Re: Angiosarcoma

Hi Jill

I'm really pleased that your support nurse is being supportive Smiley Happy

And that the CT scan is not a long wait - although I know even a few days will seem like forever. Will keep everything crossed that there is no more spread. Hope you find something nice to do over the weekend.

Take care.

Emxxx

Member

Re: Angiosarcoma

Thank you Em , I really appreciate your care and concern . Just heard today that my CT scan is on Wed 3rd June and mastectomy and WLX the following week on the 11th June . Just want to get it all over with now ...but they need to know if it has spread before they operate , hence the wait for the CT scan results . Have to say my support nurse has been brilliant .
Hugs
Jill x
Member

Re: Angiosarcoma

Hi Jill

I hope you are doing ok. Just wanted to let you know that I am thinking of you.

Take care,

Emxx