hair loss???

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1501

Hi

OK Caron here goes. Herceptin is given every 3 weeks which makes it a years treatment. It is given by an infusion just like chemo. The first dose takes longer than the others and they will refer to the loading dose i.e. the first one.They will probably then keep you in the unit most of the day as a saftey precaution because a very few people have a reaction and they need you where they can keep an eye on you. My first 8/9 doses where given over an hour and a half but they now have the go ahead to do it over half an hour - your unit will tell you what they do.I can hand on my heart say that I have had no reactions at all - not like chemo. I have it done and get on with things no ill feeling at all. One thing that Herceptin can do is affect the heart and my unit make me have an echocardiogram every few months and blood tests but not every time like chemo. Some hospital do echos some do straight heart scans.

I asked recently what happens at the end of the year and was told that at the moment 1 years treatment is the recommended amount that is given. I admit to being worried because if there are any cancer cells left in my body and the Herceptin is protecting me will the cancer start growing again without the Herceptin to stop it. I was told that if any evidence of cancer reappears going bck onto Herceptin is an option. I personally think that there is a cost implication here because according to my treatment suite staff 1 years course of Herceptin costs approx £52,000. If we won the lottery and had the funds I would try and stay on it but obviously that is not an option.

As far as it coming back - I have no idea, I have just been told to be vigilant and report anything like pain or anything out of the ordinary that does not go away inside about 2 weeks. Hence the reason for my current paranoia, every twinge and pain makes me suspicious. I have arthritis in my spine anyway and an really concerned that that pain will mask something more sinister. I am sure the BCN hears my name on the telephone and cringes; but there is no one else to ask. With this Swine flu getting hold of a GP is impossible so the BCN is the only line of enquiry.

Any more questions?

Andie

1502

Hi

Gail and I must have been typing at the same time

LOL

Andie

1503

Oops - I think Andie and I have posted at the same time!! Lots of info for you Caron!!!

Gxx

1504

And again!!! XXXXXXXXXXXXXX

1505

OH wow wonder if that has happend before??? LOL (typing like that at the same time twice!!).

Andie, I see why you are worried as this is one of the first things I brought up too (what after the year?).

Yeah she said something about a Mub/ mug, (something like that?) heart scan.

I do think about all those women who fought so hard for us all and also those that lost their fight and it came too late.

Gail, I have a similar situation that I can’t understand too, that is at first I was told I was grade 2/3 but it might go up to 3.

During my consultation with the surgeon he said that I had ductal carcinoma in situ , this confuses me as how can that be when I had 2 nodes?? How can that be in situ??

The only thing I can think of is that he meant at the end of chemo as the cancer had regressed and the 2 nodes had died, so maybe he meant that is what I was left with???
I must ask these questions as my BCN thinks I know far too much so she has to tell me the truth !! lol.

Well I think I have finally lost my marbles! (or should I say my hearing aid), well I have misplaced it I have spent the last 3 days looking for it even in silly places!! I wonder if I have thrown it away? cos my fingers are still numb I wonder if I was throwing some tissue away and threw it away at the same time?
I wonder if I will be in trouble?
Steve’s going to ring them tomorrow and tell them , he will have to play a sob story and tell them I can’t hear the dr’s etc properly.

This pic was taken yesterday!, looking a little slimmer but still a stone to go!.

Did I say?? My BCN wants me to be a councellor !! lol she wants me to be one of her ladies she said and go to courses in Leeds etc.

My back is swelling again and my bust is still swollen as it hasn’t been drained.

The lady who I thought fought for Herceptin had an adoptive son and had to put her house on the market and she always wore a scarf, but the lady who I saw on net was called Rogers (mrs) this is not the lady who I mean, does anyone know who I mean? I wanted to try and find out how she is doing.
Gail have a fab time away (wish I could come , don’t know when I will be able to get away now?) love Caron xx

1506

Gosh, interesting reading girls on herceptin. It’s a shame you have to carry on going in every 3 weeks for treatment, it makes it difficult for you to move on but as you say it’s wonderful that they’ve discovered this wonder drug and also that you are entitled to it! I have to stop myself complaining about tomoxifen SE’s for the same reason. I recognise that I’m incredibly lucky to have it!
Well I’ve decided that statistics mean Jack and none of us should be getting too excited about grades, stages and statistics as it’s all the luck of the draw, just my opinion though but i hear about people who have quite good prognosises and still get recurrence so I think we all need to get thru our treatment and try very hard to forget about it, and not let it take over our lives completely! Easier said than done especially as we all get set backs from time to time! I had a very bad day yesterday as I have what i consider to be quite a major setback! I noticed when I was away in Spain last week that my boob seemed quite swollen. The week before I got measured for new bra and to my surprise after loosing a third of my boob went up a cup size to a C. Well, odd i thought! Then yesterday before my physio appointment decided to get measured again and now i’ve gone up to a D cup. Crumps, i thought that’s not good. Boob and underarm felt really uncomfortable and noticed quite a bit of swelling under arm. Well long story short, it turns out I’ve got lymphodema in my breast. Spent whole day in tears thinking I’m not going to be able to go on holiday now, the only thing that has kept me going throughout entire treatment. I was being dramatic of course, as i can still go but have anti biotics to take with me in case i get infection. Have to wear a very attractive compression sports bra to try and help with drainage, that’ll be nice in 40 degrees heat! Should avoid swimming, supposed to wear a sleeve on arm for flight, so they’re obviously expecting it spread into my arm. Feel really depressed as after Cancer coming back, lymphodema has always been my biggest fear! Then, just to complete my bad day,on the way home from the hospital, I was crying on the phone to my best friend, on the handsfree and reversed into some glamourous woman in a Merc! Lol So then had to put up with sarky comments from husband about not being able to park etc etc, could have absolutely crowned him! Still today has been a bit better and have almost finished packing!
Gail when and where u off to?
Hope everyone else ok
Take Care
JoXX

1507

By the way Caron, you look fab! and my best friend is always throwing away her hearing aid! Her husband bought her a really tiny one once think it cost a couple of grand, very expensive any how and she threw it out, got a replacement on house insurance and did the same thing less than a month later, husband went mad but in her defence she was preggers at the time so therefore very scatty!Hope you find yours!!! X

1508

Caron, you look amazing. I’m glad you’re getting the herceptin sorted out in your mind andd you’ve got Andie to talk to’

Well,it’sa year today that I was diagnosed. I don’t know how I feel, IT has gone quickly in retrospect, but so long whilst going through treatment. But treatment is over for me, no tamoxifen etc. Although I am seeing the surgeon re:reconstruction on Monday. I have been put off by your back problems Caron, but I hate the prothesis with a vengeance. And I have to have both sides done.

I didn’t get to Somerset to see the grandchildren, John wasn’t able to get away and I’ve only got to be a bit down and I just can’t drive, so I’ve stayed put.
But I am off to Ireland for 10 days with Dolores in August, and I know we’ll have a good time.
Gail, have a wonderful holiday and try to put swine flu out of your mind.
Jo, I’m sorry you are having problems with lymphodema. It just seems to be one thing after another and I hope it doesn;t soil your holiday.

Victoria, I hope your aches and pains are settling and your skin is holding out.
Thonk I’m ready for more sleep now.
Love to all Kathy

1509

Just a quickie …

Caron… did your original biopsy say it was DCIS of invasive ductal? I think you’re right though…your chemo killed the cancer, but it doesn’t normally kill DCIS so that was what was left. I had some DCIS too. You look fab in your photo!!!

Jo - so sorry to hear about your new problems. Hope it starts to feel better. This disease is bad enough on its own, but it brings so much crap with it doesn’t it.
Did you wear flight socks etc when you flew by the way?? presuming I should??

Good luck with your meeting Kathy. Will be interested to hear what they say.

Well… signing off now…Fuerteventura here I come!!!

Gailxxxx

1510

Hello ladies,

Caron - you look amazing in your new photo. Young and carfree.
Andie - looking forward to you coming around for tea
Jo - so sorry you are now contending with lymphodema as well. Main thing now is for it not to spread.
Gail - have a wonderful holiday. I’m sure the sea water will do wonders for your hair.
Kathy - good luck with reconstruction apt.

I have now had 12 zaps - so three to go. I am personally finding this a greater ordeal than chemo. Have been feeling so tired and out of sorts. Also started Tamoxifen this week so this may be contributing to my problems.

When I had my original CT scan, all was clear except for a large fibroid, which I’ve been having monitored every few months. This weeks’s appointment was the last one. The consultant concluded it is not dangerous and because it isn’t causing me any trouble - than I only need to go back if I have problms. Before then I’d wondered whether I was going to be faced with a hysterectomy.

Last weekend I went down to Rye in East Sussex where we have a house. OH bought it as a ‘project’ when he retired - but so far it has stood empty whilst we get round to doing it up. The house is on four floors and has views across the salt marshes and the river Rother. It is late Victorian with horsehair ceilings, sash windows and there is a grapevine growing along the full length of the garden wall. It is a nice house except that it needs an extra bathroom as the bedrooms are two floors away from the only one in the house, and the stairs are very steep - and no space to alter their configuration. Last weekend we finally, got round to contacting a decorating firm to providing a quote for some of the work - so feel like we have at least made a start. Rye is my favourite town in England. It is built on different levels, there’s a church at the top of the hill that you can climb up the stairs inside and look out across the terracotta roofs of the town, paying the small fee for doing so - to a clergyman who sits at the entrance with a bucket. There are second hand bookshops, a record shop housed in what used to be the old Grammar school, and the claim to the title of the oldest pub in England (rebuilt in 1400s). This stands at the top of the cobbled Mermaid Street - which makes another claim to fame, that of being among the ten most famous streets in the world. Yes, it is pretty and old with Tudor and Georgian houses and not a sign of modernity in sight - but I am sure most people outside England would never have heard of it. We enjoyed lunch in Cranberries teashop. They make a very splendid Battenberg cake - as well as onion and parsnip soup. While OH worked on the garden at the Rye House I went for a walk and listened for a while to the cackle of seagulls at the quayside where the boats are moored. I first fell in love with Rye as a child when we would rent a cottage on the under cliff and spend afternoons on Camber sands or perhaps going on the steam train ride from Hythe to Dymnchurch. Next time we go down there I’d like to visit Lamb House again which is a red brick mansion above the high street with a fragrant garden and was once the home of Henry James. (Always found The Turn of the Screw a spooky story). We went home Saturday evening.

On Sunday the original plan was to spend some time on household chores, but in the end I felt I needed to go out so we went to the Hollycombe Steam Fair in Liphook, Hampshire. As well as steam fairground rides there were three model railways to go on. The Quarry railway was the most enjoyable as it went through the woodlands and I remember thinking how fresh and verdant they looked with the sun streaming through the canopy and lighting up the bracken plants. By the time we wanted to look at the gardens the weather had turned and we got caught in a thunder storm: I think we are least getting all the rain that should have fallen earlier this month.

Only other point of note was that rads were cancelled a couple of days ago due to a broken machine - so instead of going over to the hospital I had a pleasant afternoon in Crystal Palace - and went to an exhibition in the library about its natural history connections to Huxley etc. It is a quaint place - though not one the tourist would think of visiting. More a local area. I particularly like the pet shop which almost resembles a mini natural history museum. Sometimes I spend half an hour or so going around all the different tanks and cages observing the reptiles, tropical fish and rodents. Pissaro lived at ‘the Palace’ for a while, as it is known locally, and down the road is Gypsy Hill named as such because there used to be a gypsy encampment there. Crystal Palace Park is home to the world’s first attempt at creating life-size replicas of prehistoric creatures. I was reading recently that when the beasts were almost completed a dinner party was arranged to celebrate their construction and this was held inside the mould of one of the Iguanadons. The guests of honour included John Gould an ornithologist who had helped Charles Darwin with the analysis of the Galapagos Finches. The Annerley Arms a near-by pub in Crystal Palace provided the catering for the dinner which included hare soup, pigeon pie and Madeira jelly. There was to have been a similar creation of dinosaurs built in America but for various reasons this work was not finished and the half built creatures were taken away and broken up.

Love Bright x

1511

Jo …
So is that it now you have lymphodema in your breast will it go?
Or will you have to put up with it forever?

I know what you mean about not wanting it next to recur.

How how long id now since your op? did they say you got it, did you do your creaming etc (everyday, be honest).
Ive heard about these sleeves before but I haven’t seen one.

What a day Ive had today ! Steve rang the hospital about my hearing aid, he told them I was worried about losing it but they were dead nice and told him to tell me not to worry about it and caI come in today to have a mold made and they will put it on express.
Yes Jo they are 2000 each mine was one of the new digital ones too!.

So then we (me & Steve) went to visit my auntie who’s name must not be mentioned in my house for fear of reprisals from my mother! (It’s a long story).My aunties hubby had an appointment at the hospital same hearing aid place! only his was 30 minutes after mine!.
So we left my aunties went to hospital had my mold taken and when we came out my auntie & her hubby were outside lol.

Last night I noticed my new bust was quite red anyway walking out of the hospital Steve says " shall we go see your BCN about it" I checked it was still red so I agreed went to pink rose noone could see me my bcn had gone so another nurse told me to go to my gp’s (sod that for a game of soldiers!).
Instead I decided to go to the Mcmillon suite to see if I could see a bcn there, the only problem was we had to wait an hour and half!!
Just to be told it’s ok, no infection it’s probably where the water is.
Anyway least I am getting my hearing aid!! I am not totally deaf it’s in my right ear and it’s probably got 50% missing certain pitches (high ones), but now I am used to my aid I don’t like to be without it (also another thing I can’t call Steve all the time for saying A ?? A ?? A ?? lol.
love caron xx

1512

Just thought of a question…

When you have radio can you wear jewellery?
cheers caron x

1513

nothing on top half - though I kept my ring on. Braclets may be okay.

1514

Hi

I kept my rings and bracelet on, but not necklace or earings.

Andie

1515

no jewelery at all for me!

Right night night Ladies, that’s me all packed and off to Cyprus in the morning! I’ll be back in a couple of weeks but it’ll prob take me that long again to read all your posts!

Take care everyone

Jo X

1516

Hi Caron, I’ve got 2 earrings in each ear - and never once been asked to remove them! Also been able to keep watch, bracelets and rings on. x Jacq x

1517

P.S. Let’s face it, they can’t dig your fillings out at each rads session, and your earrings are kinda level peggings with your gnashers!

1518

jacqnotyetinthebox ! lol never even thought of fillings !!
got quite a few of those !!

Gail this is to you , something (have no idea what it is?) just jumped into my mouth actually it tasted quite nice! it had a big nut or something on the top and it was all swirley whirley with a white filling inside! yum I’m glad I had my mouth open at the time! if anymore want to join? then please feel free!

Well today I put the biggest crop top I have (instead of a bra) cos at the side where the bra strap would be really hurts me so I am now thinking instead of a 38DD I might get some 40DD just to make me comfortable around the sides!
Not only that but this big crop toop I have does not dig in at all only on my new boob I have a big mark where it touches my skin and I mean touches it does not dig in at all but has left a big mark I know why it is all the water in there, that they won’t drain out , not only that the pores in the skin have gone really wide (cos they are under stress) well when I go either on Monday (I am seeing the chemo Dr for some reason as they should have referred me to the radiologist but they referred me back to the oncologist for some reason? so I will have to wait longer now for radio) and on Wednesday I am seeing the BCN so instead of her saying I have a bit of fluid I am going to press myself right in so she can see how bad it is.

I had a phone call from Mel who was in with me and she had MX no recon she was saying she has her appointment for radio already.

Owen had an invite today for paintballing it was near Scunthorpe well when we picked him up the state of his arm looks like we have shot him with a bloody Winchester shotgun!!!

Jordan’s girlfriend came for tea (dinner in V’s opinion lol) we had rump steak with chestnut mushrooms cheese peppercorn sauce and chips.
Was very nice but I always do too much why??
I was playing with Betty in the garden with a ball she is very good you say to her ASK … so she barks (well whimpers!) then you say PAW so she gives you both paws , then you say roll over so she does then KISS KISS she does !! trouble is now she knows and does them one after the other!!
We have also taught her to shut the door! as it does my head in when the door is left open after they have walked through (betty included)
So now we say " shut the door" so she jumps up to the door and closes it !! lol I think we are just lazy and don’t want to get up and shut it ourselves!
I wonder if I can get her to make a cup of tea ??? lol
love Caron xxj

1519

By the way please note that in this pic one boob does appear bigger than the other, but in actual fact the one that looks bigger is in fact my new boob which is smaller than my natural boob, it’s just the way the top falls etc , so don’t think I am lop sided!! lol

1520

Caron,
Your posts are priceless!!
I’ll reply later.
Love Kathy