September 2016 starters

Going through breast cancer treatment Chemotherapy monthly threads
381

Hi Ladies

 

Hope your all doing well.  Finally felt like my old self last week, still get tired but hopefully everything is back on track.

 

Start Rads on the the 15th February until the 7th March. 

 

Has anyone started their drug treatment, my radialogist could not wait to rush me a prescription for Letrozole:womansurprised:  macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/hormonaltherapies/individualhormonaltherapies/letrozole.aspx

 

I not looking forward to the hot flushes  (left them behind 12 years ago :womanlol:)  and muscle and joint pain having gone through two hip replacements and op on my back!

 

Will be interesting  what side effects we will have for those of you taking this drug.

 

Take care everyone

 

xx

382

His Lisa,
I start radiotherapy on Wednesday a day was told to start the anastrazole at the same time. Hopefully that has aowed me to start feeling better each day, tho like you still tired a day my.nails are falling off. It would.be good if we could.keep this thread up to the end of treatment as I feel I’ve got to know people. The other radiotherapy thread which would be relevant, posts pretty constantly and I can’t keep up!

383

I’m in the north west near Warrington. Perhaps Birmingham?

384

I’m in the North East, near Middlesbrough.

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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

386

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

387

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.

388

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.

389

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 ?

390

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

391

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

392

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.

393

Hello all,
Another itchy head here because my hair is also growing back. The terrible cradle cap is clearing up thanks to almond oil and a flannel and my side effects are diminishing. I still have issues with mucus but not as bad as it was, and random nausea rears its ugly head now and again - mainly when I’m very tired.

I am feeling so much better and crossing everything that the RT fatigue doesn’t hit me as everybody tells me it does. I didn’t realise how ill I felt during chemo until I started feeling better!

I still haven’t started on Tamoxifen, I am reluctant to add in another drug during RT and don’t really want to be on it at all! I really must bite the bullet and get my GP to write the script but it’s the thought of the SEs that are putting me off. Does anybody else feel like this?

394

Same here, itchy head, occasional diarrhoea and manky fingernails despite the care and attention I have given them (though not as bad as See See, they’re a bit discoloured and dry but still there)!? It must be the T still in our system (the gift that keeps on giving, lol). My face isn’t as dry and sensitive as it was, and I’ve stopped taking the antihistamines because I don’t think they were helping much. Since yesterday I have been limiting what I use on my face to Simple soap and a very small amount of E45 as moisturiser, and so far it has been OK, but if it flares up again I will have to go to the doctors. I still don’t know whether it is caused by T or Herceptin, and will see what happens after the next Herceptin injection in a week’s time. In the meantime, the Letrozole are staying in the cupboard! I have an appointment with a consultant at another hospital this Wednesday about radiotherapy, and will hopefully get confirmation of the dates and times for this. BCN suggested talking to the other consultant about the benefits of hormone therapy for me, and whether it is best to start taking it before or after radiotherapy, so I’ll let you know what he says about that.

395

I agree it is frustrating not knowing what is causing these effects, but it may be too early to tell for sure that the Herceptin is responsible or whether it is the T or the hormone tablets. I haven’t started taking them, but if you have, it is another possible cause of your problems if you are on AIs. I was told the main SE of Herceptin is flu like symptoms, which could include aches and pains as well as shivering, runny nose etc, so it could be either. I have had a runny nose now and again, but some of this could be because of the cold weather lately. It’s easy to blame the drugs for every symptom you get but it may not always be them. I also have a few aches and pains from time to time, but if I’m honest, it is no worse than what I had before the treatment started. I am not getting any younger and I am also not very fit! I don’t want it to get any worse though, or to get any more unpleasant SEs, which is why I am hesitating about taking the hormone tablets. My fitness has not been helped by lack of exercise at the end of the chemotherapy and immediately afterwards, when the fatigue was at its worst. I have now started exercising daily like you (at home not at a gym). I do about 15 minutes gentle aerobics twice a day, plus the post-surgery arm exercises three times a day. I only started the aerobics the week before the operation, so I’ve been doing it for about a month now. This is too early to expect any significant benefits, but I think it has helped with the fatigue and with the recovery from the surgery.

396

Thanks Aine!

 

I have been thinking of joining local yoga or Tai Chi classes, but haven’t got round to it yet (excuses!).

 

On Wednesday morning I went to see the oncologist at the hospital where I will be having the radiotherapy (a different oncologist to the one I usually see). It took ages to get there because the traffic was awful - not looking forward to that journey every day.

 

I’m having to do the arm exercises more often from now on, because the oncologist wants me to increase them to 4 or 5 times a day, to make sure there is sufficient flexibility in the arm to keep it above my head when I am on the CT scanner and radiotherapy machine. I have also been advised to carry on doing them for up to 6 weeks after the radiotherapy finishes.

 

The oncologist also said he was happy for me to defer taking the hormone tablets until after the radiotherapy, and to discuss the likely prognosis with/ without them after the radiotherapy is finished. I’m glad about that because it’s one less thing to cope with.

 

The radiotherapy is going to be a longer ordeal than expected, as there will be 23 of them not 20 (there will be 8 ‘boosters’ to the tumour area at lower doses). The whole course will therefore last four and a half weeks, and will be a lot later than I’d been told before. Yesterday the hospital telephoned with the dates for the planning meeting (not the sort of planning meeting I’m used to, lol!), when I will have the CT scan and tattoos (23 February), the briefing meeting before the radiotherapy starts (3 March), and the provisional start date for the radiotherapy itself (13 March). So it won’t be finished until just before Easter. 

 

We are making progress I suppose, but sometimes the treatment seems to go on forever.

397

I would if I had the time - I don’t know where it goes. Seems everyone else on this thread is busy as well, with radiotherapy, work, etc. I will have even less time when I go back to work next week. I start back on 1 March, and will only be doing 2 days a week (pro rata) at first. I won’t start radiotherapy until 13 March, and as I am having 23 rads in total it won’t be finished until just before Easter. We have therefore booked a weeks’ holiday before radiotherapy starts (the week after I go back to work!), as otherwise we won’t get a chance until May, because of hospital appointments. Had radiotherapy planning meeting today. Storm Doris has been pretty bad round here - had to hang onto the wig!

398

Hi Aine - I’m going back to Walsall  Council’s planning section. After six months off work I have half forgotten the stress of trying to respond to this week’s policy change from the government or consultation on proposed changes, comment on planning applications at short notice, and pull together the ridiculous amount of evidence needed to justify the emerging local plan policies (Brexit might mean Brexit, but in the meantime all relevant European Directives still apply!). But I will soon be reminded…

399

Sorry Aine, misunderstood! We are going to stay in a cottage in Somerset, near the boundary with Wiltshire, which is within easy reach of lots of places of interest. I’ve booked tickets for Stonehenge on the Tuesday (so that’s the day it will tip down with rain!) because we’ve not had chance to see the new visitor centre yet. P.S. I’m 53 not 63 - 63 is my DOB not my age! I am Old Dawn, not The New Dawn, which is a pale pink climbing rose (rhs.org.uk/Plants/96212/Rosa-New-Dawn-(Cl)/Details). We used to have one of these growing against the back wall of the house where we used to live. It grew very well, and was enormous by the time we left, so we got another one when we moved to our present house. Unfortunately it didn’t thrive where we put it (was badly affected by mildew and black spot), so we got rid of it. But the Old Dawn isn’t doing too badly at the moment.

400

Hi. Ladies,

I completed my radiotherapy today so that’s my hospital based treatment pretty much done. YIPPEE ??.

My nails are still falling off; my fingers and feet are numb and I have little head hair, (though I do have some lower eyelash ?and leg hair ? again); my breast is red and sore and my right arm is swollen from a blood clot … but apart from that … and being tired … I’m beginning to feel well / human again.

I was diagnosed on 3rd May; had a mastectomy and reconstruction for a 115mm lobular, oestrogen receptive tumour on 30th June followed by aspiration and then further surgery to remedy infections; chemo from 25th August to 4th January and radiotherapy from 25th January till today.

I just have 5 zoledronate injections left at 6 monthly intervals and hormone therapy (anastrozole) for 5 years. Oh and daily clexane injections till my PICC line induced blood clot dissolves. The plastic surgeon also has designs on my body for further minor surgery at the end of the year to ‘even me up,’ give me a nipple and tidy up my abdominal scar, but I think I’ll just have a tattoo ?.

They say my prognosis is over 80% that the cancer won’t come back ?.

I really can’t fault any of the fantastic treatment I have received, nor the positive and caring attitude of the staff.

I’m planning to return to work on 3rd April on a half time basis for the first few weeks till my concentration and stamina have built up.

Thank you ever so much for your support. I certainly wouldn’t have got through chemo without your support.

Hope others are doing as well xx