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September 2016 starters

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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

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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

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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

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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...🙅