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Long road ahead...

16 REPLIES 16
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Member

Re: Long road ahead...

Hi butterfly. Sorry you've had to join us. I remember how scared I was when I was diagnosed in April I too had lymph involvement. Mastectomy and full lymph clearance followed. The op wasn't half as bad as I'd expected. I was enjoying a pub lunch within 48 hours.
I'm currently going through chemo. I had my second session of fec last Tuesday and I'm using the paxman cold cap. I haven't lost any hair off my head yet. It seems to work best of your hair is thin so the cap gets a really good tight fit so if you have thick hair you might want to consider getting it thinned out.
This is a scary time when your thoughts are all over the place. I can promise you, things will get better. Breast cancer is very treatable. Sending you a hug. X
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Community Champion

Re: Long road ahead...

I cold capped for my first chemo but still shedded a lot of hair so didn't bother again after that as I felt the pain wasn't worth the gain. I shaved my head grade 2 all over and still have about 40% of my hair after 5 chemos. I have a bald patch on top which is growing some peach fuzz on it since I started Docetaxol.

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Community Champion

Re: Long road ahead...

The cold cap does not work on everyone. They don't seem to know why that is, it can be uncomfortable for the first few minutes so if you are going to try it take a couple of pain killers about half an hour before your appointment. After the first few minutes most people don't notice it because your head goes numb but some people find it too uncomfortable and ask for it to be removed. The nurses will ask you if you are OK or you want to take it off.

 

Even if you keep it on it might not work but in any event you will shed some hair. My hair thinned but not by much and I have never needed a wig. I do wear a few clip in extensions or a topper (wide extension) if I am going anywhere nice (I went to a wedding and used them then).

 

The advantage for me was that I was "back to normal" far quicker than I would have been without hair. Unless they know me nobody would know I had had chemo because I have shoulder length hair - a bit thinner but still lots of it.

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Member

Re: Long road ahead...

Hi,

I'm good at the organising bit, which is why I think it's so hard to get my head round. Read lots, got notebooks, pens and pencils, lots of lists of questions, and folders to put it all in! The difficult bit is coming to terms with the fact that it's all about me. I'm not really sure what support I'm going to want at the moment, but thank you for the reference to Macmillan - something else to look into 😊

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Community Champion

Re: Long road ahead...

Hi Butterfly,welcome .There is such a lot to get your head around when you are already in shock isn't there.We used to joke that what you need when first diagnosed is a cook ,cleaner ,driver (preferably George Clooney or similar ) to take you to appointments ,plus a personal assistant to help you get organised .All you actually get is a lovely breast cancer handbook to read !!! Do you have plenty of practical support ,in some areas MacMillan have volunteers who can provide practical support during treatment .
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Member

Re: Long road ahead...

Thank you everyone for your replies.

I am wondering about the cold cap, but have seen mixed reviews. I have very short hair anyway which might be good in some ways, but won't hide any fall out when it happens. I think I'm going to give it a go and see how I feel. The alternative is to hide away, which I have a tendency to do when things get tough. 

You've mentioned limiting food intake before a chemo session, and I've seen that mentioned a couple of times too so will take a look. Makes me feel sick just thinking about what's to come, so goodness knows what I'll be like when it gets going! 

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Community Champion

Re: Long road ahead...

Hello,

 

I am HER2 positive and have had chemo and am still on Herceptin.

 

I did not believe them we they told me because I looked and felt perfectly healthy!

 

I used a cold cap and kept lots of hair so you might want to try that. I limited my food intake before chemo because I followed the guidelines of Valter Longo (Google him) and I was a lot better off that most others that did not follow the guidelines in that I did not have tummy troubles or cold sores/mouth ulcers. I still got a bad taste and after a few treatments my blood counts went low making me very tired.

 

I had surgery first, then chemo, then rads plus Herceptin for a year (2 injections to go).

 

I still take Claritn hay fever tablets because of this:

http://www.theonc.org/author.asp?section_id=2368&doc_id=264569

 

Herceptin can cause runny nose so I still take it and I don't have many problems on the Herceptin.

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Community Champion

Re: Long road ahead...

Hi Butterfly, sorry to hear of your diagnosis and welcome to this lovely forum. We're all members of the same club which none of wanted to join. I'm similar to you except the HER2 bit, I'm HER2-.  I've recently had my 5th out of 8 chemos of the FEC-T. Finding out you need chemo us quite scary but once you get started you just deal with it somehow.  Of course I would rather not have to have chemo but I know I need it so have to toughen up.  Get yourself prepared in advance with wig, headscarves etc whilst you can still shop freely.  Make sure you join the treatment, chemo monthly thread on this website and others will join you who are going through treatment at the same time. The support you give each other is incredible. Have a read through previous monthly threads to see how others have managed their side effect, like It's really important that you drink plenty of water.  I wish you well on your treatment journey. You can do this. Xx

Member

Re: Long road ahead...

Hello,

I have just had my third round of chemo after being diagnosed just over two months ago, very similar diagnosis to you with lymph node involvement too. I was the same when I heard the word "chemo" I thought hang on!! Then talk of surgery and radio it all gets a bit much. I have only just started actually reading up about the type of cancer I have as I couldn't bring myself to read any information I was given, my husband read up on it but I told him I didn't want to know. We all deal with things differently and make sure you allow yourself as much time as possible to get your head around things. Big hugs X
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Member

Re: Long road ahead...

Just sending you a hug, I know it all seems so unreal xx

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Member

Re: Long road ahead...

That's exactly how it feels, thank you 😅

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Community Champion

Re: Long road ahead...

The early days of diagnosis are such a shock, Butterfly, so what you're feeling is quite normal, although horrible to go through. We've all been where you are now. It feels like it's happening to someone else. 

There's no reason not to be positive as your Drs are saying, with your diagnosis, there are lots of effective treatment options & now it can be dealt with. 

These feelings do settle down & there's loads of support here, so do come & chat whenever you need to.

hugs

ann x

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Member

Re: Long road ahead...

Thank you Claire, I think it's the chemo I'm finding hard to get my head round. Saw the oncologist today, and I know it's the right course of action, just never expected any of this 😢

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Member

Re: Long road ahead...

Hi Butterfly free
Sorry you had to join this club that noone wants to join. I just wanted to reach out and tell you that I had a very similar diagnosis to you last Sept and found the early days really difficult but I'm now on the other side of chemo surgery and rads. Still having Herceptin and Tamoxifen but once treatment starts you will feel calmer. Feel free to ask any questions am sure you will get lots of support on here
Claire x

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Member

Re: Long road ahead...

Thank you
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Community Champion

Re: Long road ahead...

Butterflyfree

 

Hello and welcome to this forum where you will get loads of help and support from the lovely ladies on here.

 

It is early days for you and you have so much information to take in, give yourself some time to adjust.  I am assuming that you have had your treatment plan which will set out what you are going to have and when which will help going forward.

 

Come on here as when you want and there will always someone on here to help.

 

If you go on to the Going through treatment section there is a thread entitled chemotherapy where you will get lots of support

 

Sending you a hug

 

Helena xxx

 

 

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Member

Long road ahead...

Still can't believe it's happening to me. Diagnosed with IDC, ER+, HEP2 + Grade 2 with confirmed lymph node involvement. Need 8 cycles of chemo, followed by surgery and radiotherapy. Doctors all sounding very positive but it just feels so unreal. Maybe it'll kick in when treatment starts?