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December 2015 chemo

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fredflowerpot
Member

Re: December 2015 chemo

how is everyone doing ?

red_robin
Member

Re: December 2015 chemo

Well that was lypo remodelling done on Wednesday. Feeling really sore and bruised now. Can't wait to get this elastic compression bandage off of my middle. Sleeping is awkward. So tired.
Hope everyone is doing ok xx
Gfnich
Member

Re: December 2015 chemo

Hi Marina,

 

sorry to to hear about your further op, that's bad luck.  You sound upbeat though and that's the best way to be if you can.  I am doing ok apart from severe hot flushes and night sweats!   My hair is coming in thick and fast now and have all of my nails back.   You take care and keep intouch

 

gillian x

red_robin
Member

Re: December 2015 chemo

Hi all!
Kim yes it is Vicky. Well remembered 😉
Yeah can not see an end. Just a long break before having more surgery. Yeah like you say at least it won't mean messing around waiting for results.
I will probably need surgery to put the capsular constricture right. Then hopefully a long break. Then in a couple of years I am having the other side chopped off so as to help reduce the chances. Then once I hit the menopause the ovaries are going too. Got to love the braca1 gene. Going to be surgery after surgery.

On a good note though....
I went to have my rads tattoos lasered today. Posted this in tattoo removal.


Heads up for anyone in West Sussex who wants laser tattoo removal.
Brian at rebel laser tattoo removal and body piercing (inside Needle and fred tattoo parlor) will remove radiotherapy tattoos for free!

This is my review I left for him...
Came in today to ask about a very sensitive tattoo removal. 3 little dots from radiotherapy for breast cancer. Brian could work out from looking at them how they were done and treated them straight away. Even better too he was so understanding of how these awful dots made me feel that he is treating them for free. So nice to find someone so understanding and compassionate. Thank you so so much Brian you probably don't realise how much this means to me. I will be telling everyone I know how great you are!
Marina
Member

Re: December 2015 chemo

Well after initial lumpectomy & 8 x chemo I was operated for 3 cysts in same place. Turns out one was cancer. How does cancer grow during chemo I ask! Anyway then operated again for clear margins. Still have drainage attached.
Apart from that I'm well!
Hope everyone else is doing well.
Marina
fredflowerpot
Member

Re: December 2015 chemo

hi all. long time i know i am still with out any kind of pc or laptop so  as babysitting nephew i am able to get on line. how are you all doing?

i have being having lots of xrays, mri's and the neculare bone scans since i last spoke. i hope to get results for last scan next thursday. 

it is to see what my hip has ben up to wile i was on chemo and what it is like now.

 i have lost the use of my left hand and constant pins n neddles in other. plus hearing has taken a battering but all in all ok.

i havent had a holiday yet but will hope to get one in september.

 have any of you been away? tc and hope to be hear again soon

 

Gfnich
Member

Re: December 2015 chemo

Sorry should have put yr name in Marina xx

Gfnich
Member

Re: December 2015 chemo

I've often thought about you and we hadn't heard from you for so long.  I hope all is ok, please let us know xxx

Kim555pink
Member

Re: December 2015 chemo

Hi Vicky (think that's your name RedRobin!) I had immediate silicone reconstruction and finished radiotherapy in June. Think I might have to have further surgery as my surgeon wasn't happy how the implant sat although it wasn't bothering me. However the area seems more tender now and swollen, so maybe radiotherapy has affected it 😕
Just when we want an end to it all eh?! Although I guess recovery will be quicker and we don't have to extra worry of results and further treatment ...
Hope all goes well, Kim xxx
red_robin
Member

Re: December 2015 chemo

Capsular constricture. Scar tissue formed around the implant and squeezing it. Probably more surgery in October to put it right. 😕
Marina
Member

Re: December 2015 chemo

Hi Ladies ... remember me

I have finally finished chemo and have had to be operated again as 3 lumps appeared in the same place. They were taken out Monday and waiting now for confirmation that they are not cancerous. Can´t start rads until scar healed so a little wait still.

Had managed to be very strong but now my world is falling apart. Can´t bare to think that soon it will be all over and I have to go back to work. So worried that the work stress will bring it all back. And think that if it comes back, will it be because of the stress of work. I´m only 52 yrs but wish I could retire!!

Marina

red_robin
Member

Re: December 2015 chemo

Rads follow up appointment this friday with plastic surgeon to check it hasn't cuased damage to recon.

xx

red_robin
Member

Re: December 2015 chemo

That's great news Tina. I still don't have my appointments yet. None of the follow ups from rads at all. Xx
Tandy 4
Community Champion

Re: December 2015 chemo

Hi all...... Yup! Rads finished for me Tuesday 14th. Am bit tender, itchy, very red boob and very very dark underarm! I've a large diamond shape patch where they did the direct boost rads last 4/19 sessions. Skin holding up ok for now though starting to peel under boob and on nipple area 😖 Expecting it to get worse before better. But I'm just relieved active treatment us finished.... For good hopefully!! Seeing my oncologist Tuesday and have my apt for August for rads check up with consultant. Xx 

fredflowerpot
Member

Re: December 2015 chemo

hi all how are you all doing?

how many have now finisded rads ?

 how is the skin doing?

 

Guest user
Not applicable

Re: December 2015 chemo

Amanda
Thanks for the tips xx
A.Faed
Member

Re: December 2015 chemo

Thanks Gillian, I'm doing ok, rads all done and not too red, so far!

 

The point about infections etc if important Tina, as I had to delay a week twice, meaning I finished on the 21st April rather than the 7th so consequently, rads started later too. I got the letter with the dates for the rads between my 2nd and 3rd T, it could have still had to change if I'd been delayed again.

 

You could always wait until chemo is finished and you have your dates for rads, then see if you can book something last minute. If you are going abroad, check you can get travel insurance first and be sure to include everyone who is in you group on the same insurance!

 

Amanda x

Guest user
Not applicable

Re: December 2015 chemo

Thanks all
Ill wait and see how i go then.
Amanda dubrovniks where we had to cancel this yr.....i love Croatia!
Tina
Gfnich
Member

Re: December 2015 chemo

Hi Tina, Amanda,

 

I had same treatment as Amanda and agree entirely that you need to wait and see how it goes.  It only takes a little hiccup like an infection and your dates can easily move.  Important thing is to get the darned treatment out of the way.  

 

I finished he'd rads on 26th April and have just come back from a week in Dubrovnik where I felt almost my normal self.  My hair only just started comin back mid May so is half a centimetre now and I have eyebrows and eyelashes again albeit short ones.

 

My advice for chemo especially the T is to give in to it and don't try to plan too much or you get frustrated when you can't do it, oh and avoid people with any infection at all.

 

Good luck, and hope you are well Amanda xx

A.Faed
Member

Re: December 2015 chemo

Hi Tina J,

It is normal to have about four weeks between the last chemo and rads, but it can vary a bit. You should consult with your breast care nurse or oncologist before booking anything. Also you need to consider travel insurance, especially if you're thinking of going abroad... you may be refused while you are still having active treatment so do phone a few companies and check first. It's not such an issue if you are having a holiday in this country.

Are you having FEC-T? Quite a lot of ladies find the T quite hard, I certainly did and each one was worse than the previous one! The worst symptoms kick in between 3 & 5 days after and my last one saw me unable to do much at all for about a week from the 3rd day, so the first week to ten days can be very rough! (I barely got out of bed for 4 days and spent the next few days after that on the sofa) Your immune system will still be hard hit for a good few weeks, so you'll still have to be very careful.

 

In my personal opinion, I think it could be a bit too much for you, assuming you're having FEC-T and three cycles of each, your body will be pretty hammered by then. The main thing here is that you are going through all this gruelling treatment to rid yourself of this horrible disease and try to stop it coming back. It may be necessary to put normal life on hold for a while, to give your body a chance to rest and to deal with the treatment I would consult with your BCN or oncologist though.

 

I didn't cold cap and had a massive hair loss about 13 days after the first FEC. I didn't really lose anything much after that and it was growing back by the time I started the T. My last T was the 21st April and I have a complete covering of hair which is about 1½ cm long. Of course, most of my eyebrows and lashes have gone!

 

Amanda x


Guest user
Not applicable

Re: December 2015 chemo

Hi lovely ladies. Im from the may starters. I have a question......my hubby wants to book us a family holiday after my last cycle before i start rads. I beleive there's usually 4 weeks break. Ive no idea how ill be feeling.... Do you all think its doable? You may not be able to answer that i understand....may be best to leave it and book last minute. I dont want to say yes and feel rotten while im there!
Well done for crossing the finishing line.....im jealous! Im only day 13 of fec 2.....seems so far away and despite enduring cold cap ive lost lots of hair....so much that i cant go out without head coverage : (
Xxx
fredflowerpot
Member

Re: December 2015 chemo

hi all a very long time with no hearing from me. i still have no laptop or pc .so popped to mums to use hers.

 my rads are now all done. still no hair grr

how are you all

Nadz
Member

Re: December 2015 chemo

Haha Tina my partner says I look like a baby orangutan now. All bald at front but sticky up hair everywhere else! My eyebrows and eyelashes are completely gone. Guess it just shows how long the drugs stay in your system for
Tandy 4
Community Champion

Re: December 2015 chemo

Hi all..... Day 14 of rads.... Am now quite sore in armpit where node clearance scar is, but itchy on plaster site, feel swollen (like post surgery) and very red.
Nadz..... Strange eh!? I didn't lose forearm hair till couple weeks post Last cycle! And also lashes and brows thinned dramatically same time!?! I've stopped shedding now (about 6 wk after last chemo!) and hair coming thicker, though waking some days still look like an Orangutan! 😂
Nadz
Member

Re: December 2015 chemo

Hi all. Still haven't started rads yet. Im also still losing hair, it's the hair from my head that managed to stick around during chemo, while rest of head is growing fluff. Losing arm hair as well now. It's very odd
red_robin
Member

Re: December 2015 chemo

Not much info hun. More me wondering out loud how on earth they know! Really haven't a clue myself. Feels like I have gone down the beach and found a huge rock and strapped it to my chest. One that has a squidgy bit at the bottom!
Tandy 4
Community Champion

Re: December 2015 chemo

Hi Vicky! Thanks for info!! I was begining to worry about the swelling I'm feeling under arm and hand!?!..... Could rads affect whole arm even if not directed there!?! I'm going to ask tomorrow. Petrified its lymphodaema!!! Xxx Backnto my CLAN rom early tomorrow, zap number 8..... Roll on 14tg June!!! 

red_robin
Member

Re: December 2015 chemo

Hi Gillian.
Personally I have found I am not too tired after the rads. More hot, itchy, rock hard, swollen breast.
I was thinking last night about the se's from rads and Lymphodema. They are practically the same aren't they? If so how in earth do they know if it is swelling due to rads or lymphatic system?
I have been having a bit of trouble this last week getting my ring on and off. Don't know if to be concerned or not what with swelling to the recon area and up towards armpit.
Feel ok in myself otherwise.
Hugs to you all xx
Gfnich
Member

Re: December 2015 chemo

Well done to all of you who are finished.  Be patient and don't be too hard on yourselves, it takes a few weeks to get your stamina back.  I am trying to walk 5 miles a day now and even managed to cycle 10 miles on Monday!  

 

Off to Dubrovnik for a week in the sun next week and thinking about not wearing my wig in the day, my hair is coming back very slowly but it is thickening and the wig gives me even more hot flushes.  Have a nice cotton hat though to keep the sun off,  Gillian x

red_robin
Member

Re: December 2015 chemo

Hi all. I finished rads yesterday! Woo hoo! No more driving an hour away and back.
I spoke with a senior radiographer end of last week. The tattoos can be taken off. She doesn't know how they do it but my consultant is apparently very pro taking them off. The don't need to keep them as they have all the details written down in your notes. That was such a relief.
I still have my nails although rainbow and ridged.
Hair is growing. Little more grey than I would like coming through at 35 but still its looking a lot better.
Eylashes and eyebrows appear to have tiny little hairs starting to come through but nothing much to write home about yet.
Managing to work through rads has again kept me sane!
Glad to hear you are all doing not too bad and things generally are on the up. Xx
Tandy 4
Community Champion

Re: December 2015 chemo

Hi Nadz..... And everyone else..... Yes it's a bloody pain explaining why though chemo finished we feel so tired, nauseas, fat and yuk still!!! My onc nurse said I may still have niggling SE anything up to 3 month or more! My finger nails are 'ridgy' too, and  strange colour. Though hair coming back (grey, baby soft and wrinkly) WHY ARE MY EYEBROWS STILL THINNING?!?! I've noticed this more this week!?! And no sign of my lashes returning either!!??! 😒😢 My legs are still very achy and I'm desp to lose some weight! 

 

My zapped boob got quite itchy today!?! I'm using Aveeno moisturiser and also told to put on at least twice day. 

I've got my daughter home now Nadz and I'll be leaving her on own next week when I return to CLAN Haven till Friday..... 😏 Still, I must remember the **bleep**e long drive there and back would be draining everyday! and try and find things to stop the long hours. I've got a hairdresser visit Monday and reiki booked to look forward to this week and a Look good feel better afternoon next Monday. I'll book another therapy for week after when I'm there Monday. Two down, 17 to go.......... 😏

Nadz
Member

Re: December 2015 chemo

Hi all, yes it's a great relief having finished. I'm amazed that I'm still feeling some of the SE's though and the hot flushes are more often.
Hair is coming back, it's blonde where I lost it but on the areas where I hadn't it's still the same colour. It's also coming back straight! Hair else where is growing too. Which is a bit depressing.
I was put off by the mention of the possibility cancer coming back. From what I gathered they need the tattoos to stay as a reference point just in case. I don't know what colour of ink they use yet, keep joking with people that I'm getting some new funky tattoos- like phoebe from friends, a tattoo of how the earth looks from really far away!
I had 2 nails come partially off, my big toe nails. My fingers are all ridges and various shades of purple,with index and thumbs lifting. I just keep them clean and painted and so far none have become worse.
Gosh Amanda you have alot happening right now, I hope it all works out for you though.
Vicky, maybe you should speak again with the radiotherapy peeps and just explain how you feel your trust has been broken by the unexpected rads and you would deeply appreciate it of someone explained all the steps to you, to help build that trust again? And for them to put it in writing for you,so you can reference it whenever you have a moment of doubt?
Sorry to hear you are on your own again Tina but hope your spirits have risen since coming of chemo?
I nearly feel like I miss chemo, just because it was the reason to why I felt sick etc, now that I still feel this way but no chemo makes me feel like a fraud? I know it can take a while to get over it, but still..feel like I have to justify why I'm exhausted, nauseous and sore to people, even though no chemo.
Kim555pink
Member

Re: December 2015 chemo

Hi - dropping in from the Jan thread - we are worrying about our nails too!! I hate the idea of any lifting, I'm very squeamish when it comes to nails 😨
Wishing you all good luck with your next stages of treatment, returning to work or generally getting on with life!
Xxx
JenJen
Member

Re: December 2015 chemo

My nails sound like Gillians

I kept them all through chemo with no pain or worries they were going anywhere they looked fine but about 4 weeks after finishing the tops started to turn white and peel if I trim them and get rid of it then it just reappears. I have just painted over (not something I can usually do as no nail varnish at work) mine are still short so I dont catch them and im taking it as an opportunity to paint my nails knowing eventually it'll stop .
Gfnich
Member

Re: December 2015 chemo

Hi Amanda,

 

I had FEC T and suffered with really aching fingers.  Since I have stopped the new nail is growing fine but about half of each nail near my fingertip has gone white and is lifted from the bed.  Eventually they break off and leave the attached bit behind.  To be honest they don't hurt, are just unsightly but a bit of polish makes them look better and I am told they will grow out.  Gillian xx

red_robin
Member

Re: December 2015 chemo

Hi Gillian. Thanks for the rads tattoo info. I will look them up tomorrow. Just off to bed.
I haven't lost any nails as yet. There is a definite lower area by the cuticle and bit bumpy as it comes towards the tip. Looking sort of rainbow really. Various different red, purple, yellowy sort of nearly orange lines. Bit peculiar but kind of pretty in a twisted sort of way! Xx
Tandy 4
Community Champion

Re: December 2015 chemo

Hi.... Amanda I've still got niggly SE.... And my fingernails are a lovely shade of purple, thumbs and index worse. My big toe nails still feel like someone has stamped on them, my left big toenail is half black/purple and hoping it's not going to come off. My eyebrows seem to still be thinning!!! But my hair coming back slowly. But the grey!!!!!! Can't wait to get it coloured and cut again!! 

 

Feeling tired, but think Mainly boredom due to being on own! 😏

A.Faed
Member

Re: December 2015 chemo

Hi Gillian,

 

I haven't lost any nails...yet! My middle toe nails on both feet have a red/purple mark from the cuticle upwards, and are tender, too, so maybe they are going to be lost!

 

Which nails did you lose and what happened? How long after the last chemo did you lose the first one? (Were you on FEC-T?)

 

Still get quite tired by mid afternoon and in the evening and have various mild SE's but nothing to write home about. Rads start on Monday, I'll be glad to get them done, as I still have a bladder prolapse & possible hysterectomy to think about...next gyno appointment is at the end of June, should find out more about what they are planning then! 

 

Amanda

Gfnich
Member

Re: December 2015 chemo

Hi ladies,

 

I had my tattoos removed the first time I had rads.  There is a Laserase clinic in Newcastle who are private but they remove cancer rads tattoos free of charge.  The advice at my unit is you must wait six weeks after rads to have them removed and have your oncologists consent.  I was told that when I rang them just yesterday

 

It hurts for a few seconds, bit like being twanged with an elastic band.

 

Seems like each area is different but in general nhs units don't have the machine or resource to do it.  Look up Laserase there are others.  Oh and as for might need them, they use the scans to work out where they treated, my onc showed me on my previous scan Fromm 2008 and this one how they made sure they didn't treat the same are twice.

 

how are you all feeling? Anyone losing their nails?  I have lost 4

 

Gillian xx

 

red_robin
Member

Re: December 2015 chemo

Thanks Amanda. I will try. Just want to know. I am a planning ahead and knowing what's coming person but my oncology team seem to be a we'll tell her one step at a time lot. I can't deal with it. I have already told them that over them not telling me about rads until last minute. Xx
A.Faed
Member

Re: December 2015 chemo

I think you will need to be gently persistent to get them removed, Vicky. May be more receptive about it after your treatment? It seems strange that you were told that they might need them again, they don't usually treat the same place twice. And as you said, it was hardly a positive or encouraging thing to say!

 

Concentrate on getting through the treatment and tackle the removal once you have recovered from that. I hope your BCN gets back to you soon.

 

Amanda x

red_robin
Member

Re: December 2015 chemo

Hey that's good news chemo is finished Nadz!

I was also told that they prefer them to stay, in case it comes back, today by a very abrupt and hard faced lady doing the radio treatment. Well I am sorry but that is not looking on the positive side that it has gone. I am not willing to have those stupid 3mm blue splodges on my body for the rest of my life. They are making me feel depressed. I cry every time I see them. Can't help myself. In Australia and America they remove them after treatment so why the hell can't we in the UK? Because they don't want to, for financial reasons most probably, they make us have them for treatment it is only right they remove them.
A.Faed
Member

Re: December 2015 chemo

Well done Nadz, it's such a relief to finish, isn't it! Knowing each day that passes, once the last set of SE's have mostly gone, that you're body can start recovering and won't be knocked back again! 

 

Amanda X

Nadz
Member

Re: December 2015 chemo

Thanks guys!
fredflowerpot
Member

Re: December 2015 chemo

well done and big hug nadz

Tandy 4
Community Champion

Re: December 2015 chemo

👍🏼👏🏼 YAY!!!! Brilliant news Nadz!!! Xxx I start rads Thursday..... Xxx

Gfnich
Member

Re: December 2015 chemo

That's great Nadz, you finally got there 😄

Nadz
Member

Re: December 2015 chemo

Hi all! Have finally just finished chemo! At long last! I spoke with my oncologist about the tattoos and having them removed after treatment and have been told they have to stay incase it comes back. Ah well. Rads don't start until end of June, which will give me time to build up my strength.
Hope you are all well xx
A.Faed
Member

Re: December 2015 chemo

Hi Fredflowerpot, what a nuisance with your laptop! Glad to see you are on rads now, how are you finding them? A few of the December chemo ladies are also on the May Rads thread, so you could check in there, too.

 

Vicky, I have a small lump a bit like you describe where my picc line was, it just seems a bit like a scab u dear the skin really. No aches or pains though. The skin was very dry where the dressings were always on for a couple of weeks but with lots of moisturiser has recovered now.

 

Where are you Nadz, haven't heard from you in quite a while hope you're ok?

 

Amanda x

red_robin
Member

Re: December 2015 chemo

Hi. Just realised we are on the same days for rads! Finish 25th May then. Roll on 25th! Xx