Hi Guys
I am waiting for a date to start chemo and am frustrated. They led me to expect it would be next week but apparently oncologist is off this week, her secretary is off for a few days and they haven’t yet had the referral from the first hospital. Typical. If it starts the week after next instead it will be just typical of me to be having the second one just before christmas!
By the way, how soon will my hair fall out? I’m having a drug called doxorubicin x 4 then CMF x4. I’ve been contemplating getting my hair shaved off but knowing me will go and do that and then it won’t have fallen out for 2 months or something!
By the way 2, I got some great head coverings from a company in the States (www.headcovers.com). They look really good and headscarves/hats usually look stupid on me.
Sorry your having to wait for a date - you sound like you have got your head ready to start so it must be a pain??
I too had doxorubicin (along with cyclophosphamide). I tried the cold cap treatment but my hair started to fall out exactly 14 days after 1st dose. By another 6 days I had a huge bald patch on the top of my head and it was coming away from the sides - so out came the clippers - the bit I was dreading but it wastnt as bad as I thought!! I am pretty sure your hair will fall out but if it was me i wouldnt be shaving it until it did - I think I would always have at the back of my mind - what if?? - but thats just me!!
Have you had surgery yet then?
I finished chemo last week and have meeting with surgeon on Friday to discuss type of surgery - which is booked for 10th Dec!
Hi Fiona
Yep. I had a mastectomy 4 weeks ago with immediate recon using an expander implant thingy. It still looks awful and I have no sensation whatsoever except a feeling that a cricket ball is strapped on! Mind you, I am now exercising fine and feel back to normal mentally so it’s not too bad. Before my mastectomy I had a WLE and 7 lymph nodes out (clear) and 2 weeks before that I had a lump out so I’ve had enough of hospitals for a bit!
Nice to find someone (well, in the circumstances!) who has had the doxy whatsit drug. SO far noone else out there seems to have. Did you get sick and did you work through treatment? I am a teacher and really need to get back to work. while I am pretty much recovered physically and could arguably go back now, I can’t really till I know my chemo time frame as I cant mess them about/and the kids I teach.
Ho hum…
Hope you are hanging in there and well done for getting through it all. By the way, none of the other women I met on the 3 times i was in hospital had any complications and the surgery won’t be too bad I’m sure
I am also waiting to see the oncologist. I have had a WLE and SNB and received my results on Monday.
In terms of the chemo,I have no idea what I am getting, the Consultant said that all of my questions would be answered by the oncologist.
So it’s the waiting game again!!!
Like you , I expect it will fall on Christmas (b****r).
Are you having the cold cap? My BCN asked me, but I have not made my mind up. Any information or views would be appreciated.
I’m not having the cold cap thing. They said it slowed everything down in hospital and wasn’t always succesful. pLUS i have short hair anyway so I’m kind of thinking what the hell, just shave it off. Mind you there is a family wedding in France in June and I’m not sure about how i will feel being photoed bald. Maybe I will opt for a wig. I’m also a bit wary of being hairless in a secondary school - the kids will stare a lot I’m sure. It’s the eyebrows I am panicking about.
I have just posted on Chit Chat, I have had the same frustrations. When I had chemo last year my hair began to fall out with three weeks, all gone after five. I had FEC then, I am now waiting for Taxotere.
Ruth - I was only nauseas after the first dose - am sure a lot of that was anxiety too. Although it has not been pleasant - I have got off pretty lightly side effect wise - it could have been a lot worse - yes it plays up with your taste, smell, belly, few mouth ulcers, sore botty - but really it could have been a lot worse - and it has passed quicker than I thought - never thought I would hear myself say that during the ‘down’ times!! As for work - I am a nurse - so have only gone back in the past month - non clinical - 2 days a week (normally work full time). I think you will just have to see how you react and do what your body tells you - there is really no point grinding yourself into the ground - as its hard enough at times. How often is your chemo? - Mine was every 3rd week - I found the first week I was a wee bit tired the first few days but ok, end of week 1 till end of week 2 is the worst - cos thats when your blood counts go down - so you will be more susceptible to infection. Then week 2 into 3 I was fine - luckily I have worked round how I have felt since going back - that wont be so easy for you tho!.
Dyzee - as I said I used the cold cap - it was the pluggy into the wall type that keeps at a constant temperature - I tried it cos I was petrified of losing my hair and if there was ANY chance at all then I was gonna take it. - It didnt work and so I only used it the once - but it was torture really - it was on for 4 hours in total - its not for everyone - but if you like me - would always be thinking - ‘what if’? - then go for it.
I must admit, I’m leaning toward not having the cold cap, although I am dreading losing my hair. It is shoulder length at the moment and very thick. One of my friends who has BC also tried it and, like you Fiona, found the whole experience torture - and still lost her hair. I live in the North East and have been told about a really good wig shop in Leeds, so I’m trying to build up the courage to plan a trip there. I really don’t suit hats or scarves, when I say I don’t suit them, I mean I look comical in them.
I only found out I had to have chemo on Monday, so I think I just need a bit of time to get used to the idea.
Hey Ruth, how lovely, a wedding in France. That will give you something to look forward to.
Well it looks like we will both be going through this rotten Chemo together. Bring it on!!!
When and if you go to the wig place - take a good friend or couple of friends with you for advice - I took my 2 best pals and we actually managed to have a laugh into the bargain - sometimes u just got to!!
I have never actually worn my wig once - altho it was very like my old hair - but I think I would have just felt more conscious with it. I wore bandanas to start with - but now they annoy me - I wear beanies outside and buffs inside.
I had my hair cut short before my first Epi, I have used the cold cap three times now and although my hair is thinning most of it is still on my head. The cold cap I use is like a small air conditioning unit, the main drawback (apart from the cold) is you have to wear it 30 mins prior to chemo and 2 hours after, I hate the waiting around and just want to go home.
The cold cap doesn’t always work so I bought a wig before I started chemo but I haven’t worn it yet.
I used the cold cap on Tuesday. It wasn’t as bad as I was expecting, but like Diane says, it took a long time sitting around. I felt like Fiona - “what if” - I have no idea whether it’s worked yet, but I had to give it a go (one less thing to worry about, I suppose).
Vicky
Thanks for the fantastic advice and support.
Please let me know how it goes with the cold cap. I wonder what the success rate is!
Ruth.
I have just found out I don’t see the onc until 5th December.
I don’t know how soon after to expect the chemo to start. So I suppose it could be over Christmas period. Hey-Ho
whatever will be …
Hi Dyzee
I saw my onc on 5 th Nov, then 11th to sign the forms and they said it would be a couple of weeks. I am still waiting but should get a date on Tues when onc gets back from holiday. Maybe we can wear party hats instead of cold caps and pull some crackers?!
I’m with you on that one!!! Give me party…everytime!
This chemo seems a long time to wait for both of us. I don’t know about you, but I just want to get started and get through it!
I think in our Hospital they do EC but no (F) which seems to be the norm on this site. Why do they have to have such long and complicated names?
Like you , I do not suit hats, but I am going to have a look at the website you were talking about, any suggestions?
By the way, I cannot believe the amount of surgery you have had in such a short time. You are soooo brave.
I got my date - 3rd Dec! Hooray! The second one will be 28th so I miss interfering with christmas. by the way I found a great local business which specialises in mastectomy bras and wigs. Thee owner is a hairdresser and she cuts the wigs to suit you once you’ve chosen one. I am gonna check it out when I go bald and choose a nice bright orange number or something. Hope all is well with you all
That’s great news. I bet you are relieved now you know what’s happening. You will have to let me know how you are feeling when yo get started. I was thinking it may be a good time to start a new thread for first chemo’s nearer the time, there are a few who are due to start within the next couple of weeks. It would help to both support and be supported.
That shop sounds brilliant, where is it you live?
Well, I should have news about my dates on Wednesday after I have seen the onc, I hope so, I need to have a plan now.
In Mid wales about an hour from swansea. Wont it be great if the leg hair and armpit hair goes too?! Good idea about the thread but i’m not sure how to start one. Hope the dates are ok and you get going soon. It is nice to think it will be underway and then we can concentrate on getting better. I’m hoping to go back to work in Jan so fingers crossed we all stay fairly well