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September 2016 starters

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Re: September 2016 starters

Hi I hope everyone is recovering well and being good to yourselves!

 

I am having a lot if itchiness lately I think as a SE of Herceptin.  Itchy armpits! Hope its not bubonic plague.

And random itchiness all over. 

Is anyone else?

 

And of course achy weary legs still - 2 weeks after injection.

Im going to see the hospital doc tomorrow and ask for it to go down to 80%.

I cant stick this for a year.

 

Just for your info - my hands have gone back to normal.  Nails are deteriorating still. Think some will break off soon.  Other SEs have more or less gone now.  I NEVER thought I would be able to say I have kicked the nausea but I have.  Only rare flare ups when Im driving for some reason. 

Anyone else feel this?

 

Hope all you ladies on RT are getting through it with less discomfort than chemo.  We have been through so much.

A

 

 

Member

Re: September 2016 starters

Thanks RosieRo and SeeSee. Sorry to hear you are both having some discomfort with your radiotherapy. I've got to have 20 of them (oncologist didn't say why but I suspect it is because the tumour was close to the chest wall) and I'm not looking forward to it. I don't think I deserve any congratulations at the moment because I haven't returned to work yet! I don't think I have a lot of stamina, but I am trying to get a bit fitter by eating less and doing moderate exercises at home, including the arm exercises I have to do following surgery. I bought three post-surgery bras before the operation and have been wearing these and a couple of my existing padded T shirt bras most of the time, because they are comfortable. Before I bought them I got myself measured in M&S to make sure I had the correct size. As well as these, I got a couple of zip front sports bras which I have been wearing for hospital appointments, and a couple of padded crop tops (from Sainsbury's) for wearing in bed. I never did get any button up pyjama tops, but I haven't needed them, because I have been able to wear some of my existing pyjamas which have loose, baggy tops, and some old strappy cotton nighties which I can step into and pull up. I don't think there's much difference in size at the moment, but once the swelling has gone and the radiotherapy has shrunk the BC one, it will probably be smaller than the normal one, so some padding may be needed to even things up. So far the antihistamines seem to be helping with the skin problems, but it's still early days. At the moment lack of motivation is my biggest problem, having been stuck indoors a lot of the time, so I am hoping that returning to work will give me an incentive to get out and about again. Hope everyone is feeling better day by day now that the chemo is behind us.

Member

Re: September 2016 starters

Hi everyone,

I haven't posted much as things have been pretty uneventful and I don't feel I've achieved much. I'm not thinking of returning to work till April (last rads is 28th Feb and then I hope to use my outstanding leave).

 

I've had 8 rads with 17 left. The hospital I attend got 'outstanding' this week.  No particular side effects I've noticed yet but I did ask for one of the male students not to be in the room in future as he makes me feel uncomfortable. I think it's just that he's concentrating on the treatment so much he forgets there's a person on the table. They were very good about it.

 

Saw the radiologist midweek and that made me feel better, as though a clinician was still in charge of my trematment. I've been referred for physio on my non-treatment arm as I still have a lot of swelling from the blood clot caused by my first PICC line and was only managing the exercises with the treated arm.

 

Also found another cancer support centre this week where they are doing Pilates for people who've had breast surgery. There were people under 60 there which was reassuring. The centre where I had my counselling had generally older people and just did craft and knitting. There's rambling, aqua and free therapies at this one which is between the hospital and home so I may get more involved.

 

Hope everyone else is doing ok

 

Hugs Cathy x

Member

Re: September 2016 starters

Hello all - well done to Aine, Auntienanna and Dawn for their various achievements of working amazing hours (respect) wig wearing and surgery survival. You are all so impressive. I'm pleased if I can walk my previously normal fast speed for longer than 10 mins. How are those of you having radiotherapy getting on? I've had 3 so far and it hasn't been as easy peasy as I'd hoped. Despite having full range of movement in both arms I've found the position very uncomfortable. The second time wasn't good as I had painful neck and shoulder and got a tiny tremor in my arms which they mentioned but apparently was "within tolerance parameters". I've now got extra pads for my neck and shoulder to take to the next session and I'll take pain killers too. Doesn't it take ages too by the time you travel, wait, have treatment and get home again! On the plus side it will all be over soon. I'm so looking forward to having eyebrows and eyelashes as I look like an alien with no features. Not that worried about the hair on my head as it's beginning to show signs of movement and I love my wig which I have worn 14 hours a day every day! I did get some really nice soft bra type tops via Amazon which give some support as I'm not very large but didn't fancy going bra less as it emphasises the size difference too much. Good luck to everyone. Rosie xx
Member

Re: September 2016 starters

Still here as well - hello everyone! Well done Aine for overcoming your fears about wearing the wig in public! I don't know how you are managing 9 hour shifts so soon after chemo Auntienanna, you are putting me to shame. I've got stubble on my head now rather than the baby owl fluff I had at first. It is growing faster now but still thin and patchy, and I've also lost nearly all my eyelashes! I am planning to return to work in a couple of weeks' time though it will be staged return, probably 2 days a week at first. The concerns about infection no longer apply, the wound is healing well and no further surgery is required, and I am also feeling a lot better, so I can't justify being off sick any longer. I am waiting for my manager to fix a date for a meeting to discuss arrangements for return and agree a start date. Last week I had confirmation that the biopsy results from the operation were all clear, so no need for a second operation, which is a relief. The wound has more-or-less healed now, although there is some swelling due to build up of fluid. Surgeon and nurse had a look at it yesterday, confirmed it is OK and there is no infection. Nurse drew off some of the fluid as it was a bit uncomfortable and was told the rest will go away on its own eventually. I still have skin problems which have persisted since the last chemo cycle. It seems to be some sort of allergic reaction. From time to time my face goes all red and hypersensitive and a few blister-like spots appear on my nose and cheeks, and more recently they have also appeared on my chest and arms. It is sometimes accompanied by menopausal symptoms (hot flushes). Has anyone else had anything similar? These symptoms flare up at random, usually at least once a day, and tend to last about an hour or so before they subside. Sometimes the redness and blistering is triggered by applying moisturiser or cleanser, but not always. I thought the problems might be caused by Herceptin. I've had two injections so far, the first one on 9 January, and the second on 30 January following echocardiogram confirming my heart is OK. I've therefore been on some of the Targeted Therapy threads to see if other ladies having Herceptin have reported anything similar. It seems others have had skin problems, including some much worse than mine. Vintage started her Herceptin only injections about the same time as me and has also had a facial rash. Her oncologist thinks it is caused by the lingering effects of the T chemotherapy and not the Herceptin, and so does mine. She has been given some antihistamines and senistive skin moisturisers by her GP. I have been advised by BCN to try over the counter antihistamines in the first instance (e.g. Loratadine or Cetirizine) so I am trying Loratadine to see if it helps. I have also been advised to use perfume free soap so I have got some Simple soap. Hope you and everyone else on this thread are recovering well. XXX

Member

Re: September 2016 starters

You must be exhausted after 9 hours on your feet!  You are doing really well to be able to get back so quickly.

I love the baby owl fluff description!  I have that too!!

Im dying for my hair to grow but it is sooo slow.  At least I have got used to my wig and Im told it looks just like my own hair so that has given me confidence.

Its hard to shake off the SEs - but I see an improvement every day.

A

Member

Re: September 2016 starters

I'm here! Funnily enough I was going to post here once I was in my pjs.

I've just completed day 2 of rads, it's okay but I sense I'm going to be fed up of it by the end lol. My breast feels a little achy tonight but it looks fine. I'm putting Aveeno on it twice a day until they tell me otherwise. I suspect they would be cross at my not taking on enough fluids but I'm back on placement and though I try to nip into the staff room for quick sips I'm often too busy to do it as often as I like.

I'm only doing 9 hour shifts, probably for the rest of the academic year but I'm hoping I won't be too fatigued so I can start building up to 12 hrs before then. I'm on a busy surgical ward so I don't have chance to feel tired until I stop but when I'm on my way home I definitely feel it! I am loving it though, everybody is wonderfully supportive and it feels great to be back into the swing of things again.

If only the lingering effects of chemo would do one....nausea and excess mucus I'm looking at you.

Oh and I have eyebrow stubble and baby owl fluff 😀
Member

Re: September 2016 starters

Hellllooooooo!!!!!!

Where is everyone from the September thread?????Man Happy

Member

Re: September 2016 starters

Rosie Ro and everyone

 

I just found out that there are free massage/reflexology/reiki, etc at our local Macmillan centre.

You should all ask about them at your next appt

A

Member

Re: September 2016 starters

Hi Dawn! 

And for information of others in the same boat!!.....

I bravely wore my wig all day yesterday - my yoga class in the Maccmillan centre which was easy as among friends - and called into the local shop to get milk.  Thats a big step forward for me. 

So I contacted some friends and said I was ready to meet for dinner - havent seen them since last June!!  Havent been out after dark since September!

I paid £180 for the wig and £40 for the shampoo etc package that goes with it.

The wig is very lightweight and feels odd after months wearing bobble hats. 

I am entitled to a second free wig 6 months after the first one (which I hated) so thats April.

My wig has a parting where you can see your scalp a bit and the front has an uneven edge so it looks very real.

 

My sense of taste has come back after months of eating cardboard...BUT I have eaten chocolate non-stop since.  Just cleared all of it out of the house so no more....my tongue and gums had been numb. 

 

Nose and eyes streaming badly when out in the cold.  Does anyone know how long this lasts please?  It only started 2 weeks ago.  (Last chemo Jan 2nd)

 

Lastly....is anyone else thinking about getting the other breast 'lifted' to match the new one???

I dont know anything about this yet and havent got my review appt yet.

 

I am getting my 4th Herceptin injection tomorrow.  I have had no SE's so far though I couldnt tell during chemo.  I am hoping I will be ok.  The nurses said I should be ok.

 

Be good to yourselves.  I am starting to.

A

 

Member

Re: September 2016 starters

Aine - forgot to say, glad you are happy with your wig now, and that you are also starting to see signs of hair growth! With any luck you will have reasonable hair cover by summer and will be able to get rid of the wig. My hair is really starting to grow now, but it is still thin and sparse, because some hairs are growing faster than others. Let us know how well the hair growth is progressing.

Member

Re: September 2016 starters

Hi everyone, hope you are all well post chemotherapy, and thanks for all your support and good wishes following my operation. Sorry for not posting for ages.

 

I am starting to feel a bit better now, though it is still early days after the operation, so I am trying not to overdo things. I haven't taken advantage of the free complementary therapies offered by my hospital, because they're at at a place which isn't that easy for me to get to on public transport from where I live. But when I feel better I am thinking of going to yoga or Tai Chi classes at the local community centre, which is within walking distance.

 

Proposed meet up sounds great, although I'm not sure I would be up to it at the moment. There's also the uncertainty about when my radiotherapy will happen. It might not be easy to meet up in the middle of it. Birmingham is very convenient for me (it's just a bus ride away from home), but I'm aware it is much less so for most of you, so I am open to alternative suggestions.

 

Aine - yes I've also got streaming nose and eyes, though not all the time. It may be because I've lost nearly all my eyelashes and nasal hair, rather than a SE as such. I can't do eyeliner on the top eyebrow without making a mess (I keep blinking), so at least I haven't got to deal with runny makeup. My face also goes dry and sensitive from time to time, sometimes just randomly and on other occasions when I apply moisturiser (but not every time, suggesting it is not necessarily an allergic reaction). I also have occasional hot flushes, which can't be down to steroids because I haven't taken any since before Christmas. These things must either be an allergic reaction to something or SEs of Herceptin, which is the only medication I am on now.

 

See See - my nails are dry as well, and have ridges marking each chemo cycle like tree rings. They are also are a bit discoloured despite the Onicolife drops and the oiling (which I've continued post chemo), but I don't think they're going to drop off. They're still growing and I've been clipping them, so I think that eventually the grotty bits will be replaced by new growth.

 

I don't have a start date for my radiotherapy yet, because it depends on whether a second operation is needed. I should find out about this next week. If not, I would expect to start towards the end of February provided the other hospital can fit me in, as the oncologist said it should be about 4 weeks after the operation. So I'll be a bit behind the rest of you.

 

Re: hormone therapy, I totally agree that they can't wait to start you on it. My oncologist wanted to start me on AIs (don't know which one) before Christmas, but I said no, I want a break from medication, so it was left there. He will probably be itching to start me on it again when I next see him on Monday, but if so, he is in for further disappointment! I had only just started to recover from the chemotherapy when I started the 3-weekly Herceptin only injections and had the operation, and I still have the radiotherapy to come. I want more time to recover from what I've already had and am about to have - and I also want to have a few more Herceptin injections to establish whether the occasional hot flushes and red/ sensitive face are SEs of that - before starting on anything new.

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Re: September 2016 starters

Hi Aine

 

I have had a guess that some one would be based in NI, what a shame you would not be able to join us if the meet up goes ahead.  Yes you right about physicall hugs rather than the virual ones - but still nice that someone cares Woman Very Happy

 

We are all getting there slowly.

 

I think when my last rad due on the 7th March I can finally feel that the worst is definately over and we can all move forward with our lives without being restricted by hopsital visits.

 

Let's hopw it's a good Spring and Sumer and that we can all enjoy it which we could not do last year.

 

Take Care xx  

Member

Re: September 2016 starters

Hi Rosie,
Yes I had 6 sessions. I found reflexology was great to start with as I had few bits of my body that could be touched after surgery. Then I graduated to Indian head massage when my hair fell out and then massage when I was comfortable enuf to lie on my tummy. They had a new massage bed which meant you didn't put pressure on your chest area which really helped cos I'd had my reconstruction and want allowed to lie on my front.
Enjoy. There's little else that's nice about the treatment so it's good to new spoiled x
Member

Re: September 2016 starters

Hi - yes - streaming eyes and nose so need constant supply of tissues and spare eyeliner pencil for emergency repairs to eyebrows and eyes. My finger ends are so dry and but also strangely smooth. I think I could rob a bank and not leave any fingerprints!
I've just had the first of four complimentary treatments - a lovely massage - which I just found out I was entitled to via the cancer centre in my hospital. Pity I didn't know about it before as I can't have another massage until 6 weeks after finishing radiotherapy. I will try Reiki instead during treatment Did anyone else know about this or I am just lucky living in London? Rosie x
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Re: September 2016 starters

Glad it is a normal SE then!

 

Today is the first day of the rest of my life ladies!!!!

This is my first day out of chemo!

I am thrilled!

Dont feel over it yet of course but I am going to say positive things to myself all day!!

A

 

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Re: September 2016 starters

Hi Aine, 

Yes I've had a streaming nose for a while now. I have to keep remembering to take hankies out with me when I walk the dog. Since  my chemo ended my eyes have started to run too!

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Re: September 2016 starters

Hi Aine, 

Yes I've had a streaming nose for a while now. I have to keep remembering to take hankies out with me when I walk the dog. Since  my chemo ended my eyes have started to run too 😟

Member

Re: September 2016 starters

Hi Lisad

Thats a great idea to meet up - however I live in Northern Ireland so unfortunately will not be able to join you!

It will do you all good to have a chance to meet like minded ladies and give each other a REAL hug instead of all those virtual ones!

 

I am very aware of my fingernails too and am steeling myself for them falling off - some feel a bit strange.

 

Has anyone else got streaming eyes and dripping nose when they are out in the cold air?  Im finding it very uncomfortable.

I wonder how long these SE's last after chemo is finished?

 

I dont have to do radiotherapy but I am hoping you all have fewer side effects and get through it with fewer problems than chemo presented.

 

A

 

 

Member

Re: September 2016 starters

Hi Rosie

 

Like you I was high risk on the Predict testing.  Is there any reason why we have to start taking Letrozole straight away?  If we delayed it for a few more months would it matter?? I have picked them up but have not started taking them yet maybe start when I start my rad treatment middle of February.

 

Ladies - meeting up - I can get a train to Birmingham if turns out to be the most central place for a meet up later in the year.

 

X