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September 2016 starters

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Re: September 2016 starters

Dawn I am so pleased at your news. Surgery at least a lumpectomy and rads are easy compared to chemo.

For the surgery I only took pain killers the day after I came out (I was in overnight) but was given loads of them. The rads are nothing - even with boosts and I had 8 boosts. Just keep applying cream 2 or 3 times a day but never n the 3 hours prior to treatment. Mine were always at around 9 am so I did not put cream on in the morning. I put it on in the changing room after the rads, then again at about 3 pm and again before bed. I can recommend a cream called Biafine.

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Re: September 2016 starters

Thanks Aine and Auntienanna. Aine - sorry to hear of your problems with feet and hands and hope this does ease off soon. Auntinanna - sorry you are still being sick occasionally, but at least they seem to have got the nausea under control in time for Christmas. My sore throat is gradually easing now and the cough hasn't been so bad, but (perfect timing for Christmas!) I have an ulcer on my tongue so I'm applying the  Bonjela and hoping it will soon go! I saw the surgeon yesterday and he confirmed that the tumour is still there and visible on the MRI close up, but is now very small. I have therefore been booked in for a WLE (lumpectomy) on 19 January. Now that is sorted out we can focus on Christmas! We did the food shopping yesterday after we got back from the hospital. Unfortunately, this wore me out, but I slept late this morning and feel a lot better now. There's just the two of us having Christmas dinner at home tomorrow, so it doesn't matter if I feel a bit rubbish. We are planning to see friends and family next week, by which time I should feel more myself. Have a great Christmas. XXX

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Re: September 2016 starters

That's fabulous news Dawn, you must be thrilled to bits.

I am on day 10 of cycle 5 out of 6 of chemo and starting to feel a bit more like. I have been quite poorly this cycle, I had to go back into hospital on day 1 because I couldn't stop vomiting, I couldn't even keep fluids down. Luckily a stronger anti emetic did the trick and I wasn't dehydrated enough for an overnight stay. It has taken longer than usual to pull round and I still randomly vomit but I think that's more caused by the excess mucus that is bothering me still.

I have managed to get everything ready for Christmas though. My sister, BiL and 7 yr old niece arrived today but they have booked a cottage to stay in so I'm not woken at 4am Christmas morning! Luckily my niece thought it was hilarious that Auntie Nanna has no hair "like a baby" and my sister was relieved that my eyebrows looked quite natural and not like a 15 yr old's slug brows, lol. She is also jealous that I don't have to shave my legs - as I said such horrible treatment needs some perks!

I saw my radiotherapy consultant today, just an initial appointment to explain what happens next, SE's, to answer my questions etc. I found out that I will have a booster week of rads, purely at the site of the tumour, after the standard 3 weeks because I'm under 40 (or at least I was when I was diagnosed, I've had a birthday since then) which was news to me. If I find the rads less bothersome than chemo it will be a necessary evil and it does reduce the chance of recurrence in 20 years or more to 1-2%. I just can't wait for all this to be over and to stop feeling nauseous and tired all the time!

Anyway I hope you all keep well over Christmas and enjoy your celebrations, however and whoever you celebrate with. Merry Christmas 🎄🎅
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Re: September 2016 starters

Old Dawn that is really fantastic news and has made my day brighter!!!

This is the kind of news that a lot of people are hoping for and makes all this treatment seem justifiable.  The medical team must have been delighted for you and your family must be thrilled.

 

I am on day 12 of Cycle 5 T.  I have got over the worst now and expect to feel a bit better every day for the next 9 days.  I have had fingertips and hands giving me bother on cycle 4 and this one.  It gets worse about day 5 and eases off bit by bit.  I feel as though I have been scrubbing floors.  My hands feel swollen and tender (they are not swollen) and I can't even touch hot water or anything hot.  Everyone says its a normal SE and to take Paracetamol.  My heels are sore so I wear trainers - can't stick boots or shoes.  Some have told me your big toenails may fall off and the skin on the soles of your feet may peel off but it is not sore!!!  I don't think this will happen to me. 

So don't worry it is normal and will ease off.

I asked my Consultant should I reduce the Docetaxyl to 80% and she said if the soreness had eased off by the end of each cycle then no.

 

 

Also ....i got codeine this time for the aches and pains and it worked brilliantly.  I recommend it.  Only thing is that it causes constipation so I only took it for 24 hours for the worst day.

 

For those of you on the same time scale as me.......I consider this to be my last cycle.  Cycle 6 on Jan 3rd is the last one really but I am going to drink prosecco every night....and don't care how bad my SE's are...everyday is a step into the future and getting back to a normal life.  I really forget what it was like to have a life and not to feel nauseous and tired.

 

The last point I am going to make is very important....check out your life insurance policy against your mortgage and you might find you are entitled to a sum of money.  I did and got good news!!!

 

Wishing you all a very pain-free and relaxing Christmas break.  Carpe diem

Aine

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Re: September 2016 starters

Thanks for your messages RosieRo, Worcester Warrior and See See. Hope you all have a great Christmas as well. XXX

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Re: September 2016 starters

Dawn - I'm so delighted for you. What a lovely Christmas present! Have a lovely Christmas. Xxxx
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Re: September 2016 starters

Dawn,

 

That is brilliant news, I am so pleased for you.

 

Wishing you a wonderful Christmas and all the best for the New Year.

 

Hx

Member

Re: September 2016 starters

Hi Dawn,

 

FANTASTIC news!!! 

 

So happy for you. 

 

Have a great  Christmas and thanks for all your contributions and support. Will probably catch up with you on the rads thread next year xx 

Spoiler
Smiley Happy
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Re: September 2016 starters

Evening all!

 

It's gone quiet again on this thread, hopefully because you're all so busy in the run up to Christmas, and have much better things to do than post on here! I certainly hope it isn't because you are suffering too much with SEs from your last infusion, and I also hope no-one has any infusion scheduled for this week.

 

It's now Day 7 (actually Day 8 when posted!) of my last cycle. The usual T SEs (fatigue train 🚂, sore mouth and tongue👅, sore/ swollen throat 👄, dry cough and funny taste) are now well underway, although the red face and hot flushes 😳 and 'chemo brain' 😵 are not as bad as they were at first. They've now been joined by a new SE I didn't have on the first two T cycles: peripheral neuropathy (pins and needles and numbness in my fingers and toes), although thankfully tonight it is not as bad as it was, so hopefully it will eventually go away. It's difficult enough doing household chores wearing rubber gloves, without having numb fingers as well!

 

But today (Monday 19/12/16) I also had some good news, which has cheered me up a lot. I had an appointment with oncologist this afternoon, to review the MRI results and talk about the next stages of treatment. Arrived at hospital in slightly grumpy mood (dry/ sore throat and cough, also nearly late because got stuck in traffic 🚗🚙🚚🚛). When we got in, we were seen quite quickly (usually they keep you hanging around for ages!) so it's a good job we made it to the hospital just about on time. Arrangements have been made for start of Herceptin injections on 9 January, and for post-surgery appointment in February to sort out radiotherapy and hormone therapy.

 

We were also shown the MRI scans taken last month on a screen, and the tumour - clearly visible on the previous ones taken in August - is nowhere to be seen (at first I panicked when I saw fuzzy areas in both breasts, and felt such a fool when I said "what's all that" and he replied "that's normal breast tissue"!)! And this shows the position after only 5 chemo cycles. So despite all the ups and downs of the chemo, it has been worth it and the poison has done its work. 🎆🎈  We will be seeing the surgeon on Friday morning to fix the date of the operation in January, which we now know will almost certainly be a lumpectomy. Can't think of a better Christmas present. 🎁 Even if Christmas lunch consists of turkey casserole and yoghourt because that's all I can eat, and tastes like cardboard...

 

If I don't get chance to post again before the holiday is upon us, I am sending you all lots of hugs and I wish you all a happy and SE-free (or at least SE-lite) Christmas, with news as good as mine, lots of good company around you (so much more important than all the material stuff), and food and drink you are able to enjoy despite what the chemo has thrown at you. XXX

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Re: September 2016 starters

Hope it isn't thrush, Lisad, and glad you have managed to get a doctor's appointment tomorrow (a major achievement!). Hope he gives you something to clear it up and it is better by Christmas.

Member

Re: September 2016 starters

Thanks Dawn just read the article and note that it can be caused by Antibotics which I am currently taking so this may be the cause of it as not had it before. Have an apt  with doctor on Monday so will raise this with him. X

Member

Re: September 2016 starters

Hi Lisad - sore mouth/ tongue is a common SE of T, but oral thrush is something else. Signs of oral thrush are white spots all over your mouth and tongue, so if you haven't got that, you haven't got thrush - see: http://www.nhs.uk/Conditions/Oral-thrush---adults/Pages/Introduction.aspx. You probably have not got oral thrush if your tongue is just sore and red, but it could develop into it if you are not careful, so you may have to take some precautions to stop it from happening. Have you been given a course of Fluconazole tablets as a preventative? If not, I suggest you try and get some from your GP asap. In the meantime, try Bonjela to relieve the soreness and rinsing your mouth with salt solution after meals, if you haven't been given anything else. This should help in the short-term. Hope this helps and that your tongue gets better soon. 

 

Re: thinning eyebrows - I can recommend L'Oreal Brow Artist to enhance what's left. It is surprisingly easy to use (even for someone as ham-fisted as me). It costs £10.00 (but you're worth it). I got mine from Sainsburys but I imagine they are available from other large supermarkets and chemists as well. It is a kit containing wax, powder, tweezers and a two-ended brush. You apply the wax to the brow line with the one end of the brush, using what's left of your eyebrows as a guide, then you apply the powder, then finally you use the other spooly end of the brush to blend the powder with your eyebrows.

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Re: September 2016 starters

Hi ladies haven't posted much of late but have been reading the posts.  My last chemo is on 4th Jan due to going away on holiday over Christmas . Will be pleased when I had the final oneWoman Indifferent to be honest I do not know if I have been lucky but I have not experienced any sickness although I did found out that some of the anti sickness drugs that  I have been given under private care is not given out on the NHS unless you are really sick !! I still have my eyelashes and eyebrows although not as thick as before but still there to make an impact:smiley loll: Not sure if this had been due to me using serum on them everyday but I am happy. Have not put  on weight but this might be due to not being able to eat sweet things so there is some benefits to this:smiley loll:  finding it takes longer to recoup after chemo the more you have I guess this is a build of the drugs in your body? I am currently suffering with an extremely sore tongue what is that about? Never had it before what when I eat certain foods it's like my mouth is on fire. Is this thrush?     As I am sure next week will be busy for most of you I would like to wish you a very Happy Christmas and an even better New Year.  As mentioned we have come so far already and thank you all for your  advice and support on this thread.  Radiation scheduled for February so will probably catch up and ask questions  on the other thread.  take care everyone xx

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Re: September 2016 starters

Hi Aine, thank you for your kind words. I should also thank you and everyone else on this thread for your support, which has been fantastic. Chemo has been tough (and it's not over yet!) but it would have been far harder without all of you. It helps to know you are not alone and that we are in this together. We've all come so far now that the end of the chemo is in sight, and we know we'll get through it. I'm not abandoning this thread, just joining another one, so I will still keep in touch to see how you are all getting along. Sorry to hear you are still feeling nauseous, but glad you are managing to keep going in spite of it. It's still early in your cycle, so hopefully you'll be feeling a lot better by Christmas. It's Day 3 for me too, and the SEs are also beginning to creep up on me. I don't get nausea, but the sore mouth, throat and difficulty swallowing aren't nice either, and this evening they started. I hope this means I will be OK by Christmas. Now I'm off the steroids, the fatigue train 🚂 has arrived as well, so I should sleep better tonight💤! Goodnight everyone.

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Re: September 2016 starters

Old Dawn - I don't know what this thread will be like without you - you have been a rock to all of us and a fantastic contributor since I joined in September.

Keep in contact with us - we all still need lots of advice and support don't we ladies?

 

I am on day 3 of Cycle 5 of T.  Feeling nauseous and the aches are starting this evening from my neck and working their way down just as they did the last time.  Not unbearable but have started on the Paracetamol early as you all wisely advised.  I forced myself to take the dog for a short walk today and am so glad I did - it helped the nausea and cleared my head for a while.  Tomato soup is great at settling the stomach.

 

Hopefully we will all be able to keep our minds busy with the Xmas preparations and the next few weeks will go quickly!!

 

Keep positive everyone.  Xx

A

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Re: September 2016 starters

Thanks Gracie - chemo brain has got to me today (doesn't help with shopping) and face still as red as a beacon 😳 so could be a danger to motorists if I stand too near the kerb at a junction!🚦 It's a good job we live as far from the sea as you can get, because I'd probably be a hazard to shipping as well! 🚢 Took last of the steroids this afternoon so hopefully this will soon subside...
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Re: September 2016 starters

Well done, OldDawn. You should be feeling quite well by `Christmas. Forget about the surgery for the time being. 

 

Gracie xx

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Re: September 2016 starters

Afternoon all, my 6 cycles of chemotherapy are now done (hooray! 😁). I had the final T, Herceptin and Perjeta infusion today and am now back home and bracing myself for SEs (bah, humbug! 😬). I'll be going back to hospital tomorrow for Neulasta (bone marrow injection 💉) Then it's the final consultation with oncologist next Monday to review MRI results (he was encouraged by physical examination this morning), followed by meeting with surgeon next Friday (23 December, ho, ho, ho! 🎅) to plan surgery. I'll still be posting on the Chemotherapy Monthly Threads if there is anything useful I can share with others going through the same regime, but I will be moving mainly over to the Surgery Thread soon, as this will be the next stage of my BC journey. Hope everyone else is well and ready for Christmas. I'm sure we could all do with a bit of seasonal cheer🎄 but it's a bit early to wish you all a merry Christmas so I'll save that for next week! Meanwhile, hugs to all, especially those suffering from SEs. I hope that even so, you can see a light at the end of the tunnel (unless the fatigue train has got stuck in it 🚂 🚞, lol), because for most of us the end is now in sight, at least as far as the chemotherapy is concerned. XX 💜💛💚
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Re: September 2016 starters

Thanks for advice Vintage and Auntinanna. I have had a 'hospital bag' on standby since my last hospital admission back in October, but I'll need to have a sort through it again before I go in for the operation to make sure everything I need is still there.

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Re: September 2016 starters

When I went for my day surgery I took basic toiletries, pyjamas, clean underwear, slippers, ear plugs, phone charger and my kindle. Avoid taking jewellery or money (except for a small amount if you want, for newspapers or sweets) and I took one of those pocket sized containers of squash because hospital water needs all the help you can give it and you will be very thirsty and dry when you come round. You will be put into a hospital gown before your surgery and I only took mine off to get dressed to go home. Choose clothes carefully - you will be very stiff and sore and don't want to have to wriggle too much even though the nurses will help you to dress if you ask.
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Re: September 2016 starters

HI OldDawn63
I bought the top part of my pj's in afew sizes bigger. So it was easy to pull over my head and could stretch (on the side of my masectomy) , down without having to lift that arm up very much. Look for a strechy fabric.
I did have some movement even after the op. And I came home with my drain in after afew days. I could still have a shower because they used a waterproof dressing.
Other advice to anyone with cats. When I got home and was sitting on the sofa watching TV, I turned round to see my cat had spotted the drain tube sticking out the side and was about to start chewing it!!
Best to all about to have surgery xxx
V

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Re: September 2016 starters

Aine is right, I can't seem to find any suitable button front pyjamas anywhere. They're either too warm and fleecy, or have trousers that are too long for me and would be difficult to take up. The funny thing is, I remember seeing loads of them in the shops before, when I didn't want them! I'm thinking of getting some cheap blouses or crop top things instead, which I can wear with my existing pyjama bottoms.

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Re: September 2016 starters

Rosie - can't help you on timing of injections I'm afraid. For the pain, I am being given Paracetamol in the hospital before the T infusion, and am continuing to take them afterwards for the next few days as required. I was advised by the nurse that it is best to take the painkillers before the pain kicks in, as it is more effective at controlling it than taking them after the pain arrives. This has worked well for me so far, but as everyone is different, ALWAYS check with the nurse that it is appropriate for you before doing this. Also be careful to allow the minimum hours between doses of whatever painkillers you are taking, and not to exceed the maximum daily dose. Overdosing on Paracetamol is not recommended. Wishing you all a pain free cycle next time. XX

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Re: September 2016 starters

Truey- My tastebuds were getting better by about day 15 on my first T but I don't think they're reliable. I get my daughter to taste test my cooking to be sure. Having the next T on Monday so I'll be back to tasting metal again. Good job it's temporary as it puts me off eating!
Jo - I had day surgery too (lumpectomy plus 3 lymph nodes) and was surprised I could put my bra straight on afterwards. The thing I wish I had bought was a soft sleep bra as I found it difficult to get a comfortable position at night. I did prop my arm on a pillow and that helped. I wouldn't have liked PJs as I think it would have rubbed under the arm. The lymph nodes site was more sore than the breast.

Aine- good luck on Monday - I'm on the same track as you and due to have my final chemo 6 on Tuesday 3rd as the Monday is bank holiday. Not looking forward to the second T as I felt really rough for about 8 days, particularly with lower back pain and feeling as though I'd been run over by a bus while having terrible flu. After speaking to my oncologist I'm going to take codine (and plenty of laxative if needed) as soon as I start the injections to try to ward off the SEs. He also suggested that some people find it works better to do the injections just before going to bed. Anyone else any advice on this?

Good luck everyone- we're getting there.

Rosie xx
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Re: September 2016 starters

Bring ear-plugs!! hospitals can be very noisy at night - the staff in mine never stopped talking and it drove me mad.

Phone charger and headphones so you can watch stuff on your phone at night if you can't sleep.

 

Button front pyjamas - very hard to find though - over the head ones are too uncomfortable to pull on.

I noticed a lot of female patients didnt wear pyjamas but wore light track pants and loose tops or hoodies.  I brought 6 pairs of pyjamas for 5 days in hospital.  Only wore 4.

A zip up hoodie is more comfy than a bulky dressing gown.

body wipes to keep yourself feeling fresh.

lots of moisturiser - it can be a very dry atmosphere

 

A

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Re: September 2016 starters

Hi on day 20 of the first T cycle.  Just to say to you all that I had 2 weeks of fatigue and aches and pains along with diarrhoea days 10 to 14 (like a slurry spreader - some of you will understandSmiley Happy. I took paracetamol and it was bearable.  Nausea was still a problem.

 

However ....on day 15 a miracle happenned...the fatigue lifted, the nausea lifted and I have had 5 days of feeling like a normal human being again.   I haven't felt like this since the summer. 

 

So please be encouraged by this and hopefully some of you will have the same break as me.  I am now preparing for the second T on Monday.  In my mind this is the last one.  Cycle 6 on Jan 2 will be the final poisoning session and as far as I am concerned I will be on holiday from then on.  I don't care about SE's for that one because it will be the chemo over - think I will just drink Prosecco through those 3 weeks!

 

The LGFB last week was really enjoyable - make sure you all do one.

 

Good luck all of you and carpe diem

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Re: September 2016 starters

Also I bought some bra strap extensions from M&S to make the bra loose around my back for the first few weeks - they were a great idea.

Aine

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Re: September 2016 starters

So...surgery is booked for Jan 6th which means we can go to Munich for new year! (Booked before diagnosis!)
Lumpectomy plus skin removal with axillary clearance. I'll be having a drain in place for a week. Day surgery so home that evening . Depending on pathology results, no more chemo. I have an appt with breast care nurse to discuss everything surgery related but would really appreciate a list of what to take/wear & advice with what to expect.
Thanks in advance!
Jo xx
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Re: September 2016 starters

Truey, my taste disturbance was worse during the first 2 cycles, then didn't seem to last as long for 3rd & 4th. Certainly by day 11 I'd be just about over it but to be honest mine was more of a burnt mouth feeling. The Difflam mouthwash helped but I found brushing my teeth was more pleasant & just as effective. Also keeping food as soft as possible, drinking lots of water and sucking acid drops from the sweet shop!

Jo xx
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Re: September 2016 starters

Anyone know how long taste disturbance lasts during the T cycles? I'm on Day 11 and everything still tastes awful - on FEC my taste was resolving by now. I' m feeling very frustrated because I'm quite often hungry....

 

Sue

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Re: September 2016 starters

Auntinanna - I meant to say, how insensitive and unsettling when you are trying to concentrate on the exam! I can't understand why the invigilator 'had to ask' - did she think you were hiding some crib sheets under your scarf or something? She certainly shouldn't have singled you out, or made a fuss about ladies wearing scarves, because it's not exactly unusual these days. I dont think she will make the same mistake again but if I were you I'd have made a formal complaint - I think you deserve a proper explanation of why it was considered necessary to ask, and an apology.

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Re: September 2016 starters

Sweetbriar 1 (sorry, should have addressed to you but originally addressed to Auntinanna for some reason - you can blame the chemo brain!) - thanks for advice about what to wear after a lumpectomy. I stocked up on support bras after my biopsy, and have now managed to buy two sports bras that zip up the front. However, it looks like I will need to get some new jimjams and blouses, because I don't have anything that buttons up at the front! 👕 I am in a similar situation to Jo because I haven't had my surgery yet either. I have an appointment with the surgeon on 23 December to review the MRI results (Merry Christmas to me!) and discuss the operation I will have and when it will be - oncologist wants it to happen before the end of January. If the chemotherapy has done its job, the surgeon is proposing to do a lumpectomy although I can have a mastectomy if I prefer. He explained at my last consultation that a lumpectomy will take about an hour and I would be a day patient. This seems to be standard practice for a lumpectomy.

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Re: September 2016 starters

Hi Atomicjojo. I had a lumpectomy and 3 lymph nodes removed prior to chemo. I'm having the rest of my lymph nodes removed after my chemo has finished (last one this Wed, yipeee). They put a blue dye into my boob prior to the op to highlight the path the cancer might follow when it goes into the lymph nodes (1 out of the 3 of mine were affected). As a result I had a blue/green nipple for 4 months. As for the op itself, I waited around all day and eventually went down at 4pm. I went home at 8pm the same day. My lump was 3.5 cm. 4 months on, thankfully, my boob is back to normal. It doesn't even feel any different. My surgeon moved round my breast tissue to fill the gap that was left after the lump had been removed. The scar, which was about 4cm long in a hook shape, has faded so I guess I am very lucky. I didn't have a drain. You aren't supposed to drive for 24 hours after a general anaesthetic and after that only drive if it feels safe to do so. I didn't suffer much pain so was back driving within a day or two. I bought a soft breast surgery bra from M&S which I still wear now as it's really comfortable. I couldn't lift my arm properly for a few days but that soon improved. I followed the arm/chest exercises I was given including using some light weights (4kg) which I'm sure helped speed up recovery. Good luck with your op. Hopefully it will be a breeze compared to the chemo. X
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Re: September 2016 starters

Thank you Auntienanna. 

I have bought button up jimjams but am concerned the sleeves will chafe under the arm so not sure whether to consider a strappy top type (with sports bra underneath). I'm glad you were able to go home. I suppose that will depend on the luck of the draw with order on the day! I'm not really concerned about the lumpectomy, its on the lower part of my boob, under the nipple, its the lymph that I think I'll struggle with. Plus I'm right handed and of course it's my right arm that'll be affected. Did you have drains in? How long until you were able to be up and about? And when can you drive?!!!

Yes I'll be asking lots of questions! 

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Re: September 2016 starters

There was I sitting in my (nursing) drug calculations exam hall, waiting for the start when one of the invigilators came up to me and said "Are you wearing your scarf for religious reasons?" I was so taken aback that I blurted out "No, I'm wearing it because I'm bald!" then added that I was on chemotherapy. "That's okay, we have to ask'" she says and trots off again. I wouldn't have thought anything of it except that I was the only person in that hall that was asked about my headgear. There were 2 other ladies in there that were wearing headscarves and weren't asked about them. I know this because both are my friends and I asked them after the exam was over. It made me quite cross because there are people who suffer hair loss that are extremely sensitive about it and such a question may have really upset them; not to mention affected their exam performance. Either ask everybody or ask nobody. (My 2 friends are Muslim, of Pakistani ancestry, and one of them said that the invigilators were probably afraid of accusations of racism if they had been asked)

 

Anyway, rant over.

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Re: September 2016 starters

Hi Jo, yes I had a lumpectomy with 4 lymph nodes removed. It was a success as my cancer was contained in the tumour and my chemo is preventative. I was discharged on the same day as I was second on the theatre list and I felt well from waking up from the anaesthetic. Obviously I was sore and uncomfortable but I didn't need to use anything stronger than ibuprofen and paracetamol to control pain. I went without a bra for a few days but I find that uncomfortable so I bought a couple of non wired bras which I wore for about 2 months until everything had settled. I also found that wearing pull-over-the-head clothing uncomfortable to get in and out of, so bought a couple of pairs of button up pyjamas and chose my clothing carefully. I personally prefer to wear dresses so I wore those, as long as there was somebody else in the house to zip them up at the back for me! If you are more of a trousers person button up shirts would be easy to get in and out of. It was the lifting of the arm on my surgery side that I found sore and uncomfortable but if you had somebody to help you dress it might be possible to get into jumpers/t-shirts with help and holding one arm out in front? I was given a book of aftercare amd I did find the exercises in there helpful to keep me moving and to help me gain mobility more quickly, but if they start to hurt then stop. I didn't one day and I knew all about it the following day!

 

I hope your review goes well, if you have questions I find it helps to take a written list. They throw so much information at you it's easy to forget to ask something important to you.

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Re: September 2016 starters

Yep! It's the good old Docetaxel that's to blame. She said it will pass & to be fair I don't have the issue today but have woken up with a cold although it actually feels more like hayfever...Go figure.
Can I ask if anyone has had surgery? ie Lumpectomy plus lymph node removal. I've got a post chemo clinical review on Thurs to discuss everything but I'd like to hear everyone's experiences if possible. Also need to know what to wear post surgery!
Thanks all
Jo xx
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Re: September 2016 starters

Hi Jo and Auntinanna. I wasn't aware that breathing problems and coughing are SEs of Cyclophosphamide, but when I looked it up on the Cancer Research UK website it said that breathlessness is a common SE of C, and could be due to drop in red blood cells, so you are both right to get it checked out, although in your case it may be just a minor/ temporary thing and there may not be any cause for concern. However, I should warn you that coughing and breathlessness are also (uncommon) SEs of Taxotere due to effects on lung tissue, so watch out for them again if you are having T next. I have had breathlessness and a dry cough on both the T cycles I have had so far, but didn't get this while on FEC. It has also been accompanied by a sore mouth and T (it feels as though there is something stuck in your throat but there isn't), which has been much worse than the dry mouth l got when on FEC. My asthma has probably made the breathlessness worse than it would be otherwise. My inhaler has helped a bit, and like you, I have found cough sweets helped with the cough. Sipping water little and often is the only other thing that has helped. When the cough appeared around the middle of my first T cycle I thought I'd caught a bug because my temperature was slightly raised though still just within the 'normal' range. The cough went away after about a week, but then came back again a few days after the second infusion, at which point I realised it was a SE of the Taxotere and not an infection. This time the cough started earlier in the cycle on Day 4, and was a bit worse than the first time, but had largely gone by Day 11. I need to be careful about this because of the asthma, so I will definitely mention it to the oncologist and nurse when I see them next. I guess I should have learned by now that any SEs causing concern should be checked with the oncology team!
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Re: September 2016 starters

Auntienanna, I think it's the C part of the regime that causes the issues! But to he honest my cough isn't even bad enough for a lozenge, just this feeling of a catch inside my chest. Weird. Anyway, I'll get it checked out soon enough.
Great to hear you got alot from the LGFB session. My local one has always clashed with the start of chemo when the last thing I want to do is drive 20 miles...I'll keep my eyes out for the next one though as I'm now finished with chemo & awaiting a date for surgery.
I'm off out tomorrow to do my favourite walk/workout which I really struggled with last cycle but feel quite perky this one! Need to shift some of this bloomin weight i've put on. We shall see...
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Re: September 2016 starters

Hi Jo, I am on EC, on day 11 of cycle 4 and I am coughing a lot and sometimes feel slightly breathless after climbing the stairs. The cough appeared after cycle 2, it is a dry cough and gets worse at night. I have been keeping an eye on my temp and that is normal and after a quick Google coughing is a noted SE of chemo so I haven't worried. I shall mention it when my nurse rings me the week before my next cycle unless it gets worse. I find warm water with honey and lemon soothing and sucking Jakemans throat sweets taste as if I'm doing something medicinal even though they're probably not that effective 😂.

This cycle the fatigue has hit me harder than ever. I'm so lethargic! I find odd bouts of nausea crop up too when I'm very tired but a nap helps there, or eating if a nap isn't possible. I managed to celebrate my birthday though - even if I was home and tucked up by 11pm. I had my Look Good Feel Better course last Wednesday and I really enjoyed it. As a regular make up user I didn't really need the tips, apart from drawing on natural looking eyebrows, but it was lovely to get together with people who are going through a similar journey and swap stories and tips - like in here but face to face. I was terribly impressed with the quality of the goodie bag as well. I also liked that the lady running the session said that even though she was showing us the full face of slap it didn't mean anybody had to go the whole hog every day. If all you wanted to do was draw in eyebrows and go then fine, it's your face! I would definitely recommend trying to go to one of these if they run them near you.
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Re: September 2016 starters

Hello everybody! Can I ask if anybody has experienced lung issues?

I've just finished the last of the TC, well I'm on day 12 now so feeling ticketybooish apart from what seems to be a feeling that I can't fully inhale without coughing just once, a bit like the feeling of running outside in the cold. I dont have asthma but it feels like that although I'm not breathless. I've seen that lung changes are an SE of Cyclophosphamide. I'm seeing my onc on Monday so I'll chat with her but just curious if anyone else has had it & what treatment you had.

Enjoy your weekends! 

Jo

Member

Re: September 2016 starters

Afternoon all, and sorry for rant on Thursday. Things started to improve for me yesterday (Day 11) throat-wise and skin-wise, and the fatigue train has not made much of an appearance. I have nodded off in front of the telly from time to time, but not for long. As others have found, the main SEs of T (apart from the fatigue) appear to subside around the middle of the cycle. I hope it is the same for everyone, and that those who have been affected are starting to see an improvement now. Having ordered most of the Christmas presents online last week, today I managed to find enough energy to complete the the 'iron woman' challenge (well, I had let it pile up a bit and there were quite a lot of shirts to do...) and renew my mobile phone contract. But I'll probably fall asleep in front of the telly again later on.

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Re: September 2016 starters

Thanks Gracie for your good wishes and sorry for not posting sooner. My SEs read like a catalogue but I suspect I have got off lightly with the aches and pains and fatigue so far compared to others. The bleeding is worrying but not painful or uncomfortable. The only SEs that are really getting me down are the sore mouth, throat and cough, which limit what I can eat because it is difficult to swallow (and the coughing also keeps me awake at night), and the dryness/ hypersensitivity of my skin (particularly my face) which seems to have got worse since I started on T. The worst thing is that EVERY face cleanser and moisturiser I have tried - including ones that are supposed to be specially for sensitive skin - causes an allergic reaction. 😳 😬. I guess I will have to stay make up free (and once they've gone, eyebrow- and eyelash- less), because even if the make up doesn't cause a reaction, I can't wear it if every available make up remover and moisturiser does. Not much point going to LGFB either! Sorry ladies, rant over...

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Re: September 2016 starters

Spoiler
IMG_1228.JPG

Just about sums up how I'm feeling.....chemo certainly doesn't do things by halves!!!

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Re: September 2016 starters - sleeping (or rather NOT sleeping)

Just in case it helps anyone . . . . I had a chat with my breast care nurse yesterday and talked about the lack of sleep with steroids and then having lots of sleep later in the week to make up for it. She suggested that this was not good for the healing process and that I ask the GP for something to help me sleep on the relevant days. The GP obliged straight away. Perhaps this strategy might work for others. I only intend to take tablets once or maximum twice a week for the duration of chemo to see if it helps balance the tiredness.

 

Good luck 

 

Cathy

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Re: September 2016 starters

Hi Gracie, 

 

I was was changed from Taxotere to Taxol because my body couldn't cope with SE of Taxotere after one dose. I have Taxol weekly now and therefore it's a lower dose hitting my system each time which makes it easier to cope. So far I've been tired on two out of seven days. However this could have been because of my low blood count after the 4 previous rounds of FEC and T.

 

Had dose two today. They give you IV steroids, piriton and something  to protect your stomach. I've opted out of the ondansetron as I haven't had nausea and the constipation was awful when i took it. 

 

For me me it's definitely easier to cope with Taxol - no temperature or hospital admission so far! 

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Re: September 2016 starters

Dawn, just to add that I'm so sorry that you are suffering so badly with SEs from the Tax. It all sounds horrendous. I'm not able to offer anything by way of advice but I'm sending you a virtual hug - which I know is next to useless, but it's all I have 😟. I hope your team is able to do something for you to make you feel better.

Gracie xx

Member

Re: September 2016 starters

Thank you, Dawn, for all your help and advice. I shall certainly talk to my oncologist about having a week's break. As I'm on a fortnightly schedule, it only brings it in line with almost everyone else for one cycle. Last Christmas was marred by tiredness from radiotherapy which ended on Christmas Eve. Usually my parents come to stay, but they didn't last year and this year is all up in the air at the moment. Delaying it for a week would mean that I would be okay over the Christmas break and they could come to stay. 

 

On on the other hand, I'm keen to get all this over and done with as soon as possible.

 

I'm feeling as sick as a parrot at the moment and would love to run and hide. But no-where to run to and no-where to hide 😪.

 

Gracie x

Member

Re: September 2016 starters

Gracie - glad to have been of help and I am not surprised you are apprehensive about your Taxol treatment, I was the same before my first Taxotere. I am on a different chemotherapy regime to you. I am currently on Taxotere (Docetaxel) - 2 down 1 to go - not Taxol (Paclitaxel), but I think they are both part of the same 'family' of drugs and probably have similar SEs. I am surprised they are proposing to give you an infusion of a new drug you haven't had before so close to Christmas, knowing that the unit will be closed over the holiday period and that if anything goes wrong you will end up in A&E. Have you asked if they can postpone it to the beginning of January? Lisad managed to do this, see her posts elsewhere on this thread. The only thing you can do otherwise is make sure you are as prepared as possible. You have already found out any some of the more common SEs through this Forum but if you can bear it, you can also check them out on the Macmillan and Cancer Research UK websites before you next see the oncologist. You will then be prepared to ask about anything they don't tell you. Although the unit will be closed over Christmas, they may give you an emergency number to ring for advice if you are worried about anything. They should also check you have all the medication you are likely to need to deal with the most likely SEs, and give you anything you haven't already got to take away, just incase - and if they don't, ask for it (remember, don't ask doesn't get! 😉). Hope this helps, and that all this doesn't spoil your Christmas.
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Re: September 2016 starters

RosieRo and Aine - sorry to hear you are still suffering so many SEs and hope you will feel better soon. I started to feel better after Day 10 on my first T cycle, so let's hope you will (and I will again) too. It's now Day 8 of my second, and on this cycle the SEs kicked in earlier. The bleeding when going to the loo appeared again the day after the infusion 😣, the fatigue 'train' arrived on Day 4 🚂 along with bone pain (worse than before but not so bad Paracetamol didn't control it), and the dry/ sore mouth and throat and cough 👅👄the following day. Fatigue is not so bad now (I managed to do some housework yesterday) but other SEs are still hanging around and just when I think I see signs of improvement they flare up again! Went to doctor again about bleeding but apparently I don't meet the criteria for an 'urgent' colonoscopy referral, so all they've done is write to the hospital again re: existing non-urgent referral to see a colorectal surgeon to ask if the appointment can be as soon as possible! Have reported this back to oncology nurse, and it looks like I will have to see the oncologist next week to review the situation so he can decide what to do about the final treatment scheduled for 13 December. They'll ring me tomorrow to let me know. Went for MRI scan this afternoon 😩 - how I hate them - when results are available they had better show this has all been worth it...🙅