Hi ladies - I tried to post just now but lost the message due to ‘authentification failure’ (this happens quite a lot and I am sick of it). It is now Day 2 of my second T (Docetaxel) cycle. Had chemo yesterday as planned, and Neulasta injection this afternoon. It’s early days but so far the only SEs have been red face like RosieRo, occasional hot flushes, and like Ru, the return of the fatigue ‘train’ yesterday evening following the treatment ? ?. It was probably made worse by poor sleep the previous night (hence post at silly time). Went to sleep but woke up just after midnight (hence post to Lisad at 12.30 ish). I expect further visits from the slow train as time goes on / possible unauthorized strike action / random changes to the timetable. Hugs and good luck to all of you suffering from c**p SEs from T at the moment, hang in there because for most of us things seem to get better during the second half of the cycle, so we can look forward to ferling more ‘normal’ again and getting out and about. ???
Hie Worcesterworrior having used the Nystan all day today I doubt it works no change at all. I now feel worse. I have Flu like symptoms. What next with this T. Like you Sweetbriar1
I also got my wig sorted yesterday my hair dresser styled it for me. I left it on the manicn head. Even having it washed I felt out of my depth when I wore it, too tight I am not sure ? about getting used to.
Hi
Made it to Look good feel better today at maggies centre Monklands. (Even after chemo number 5 T on Monday . Reduced dose and steroid tail has made a big different to se this time round for the better ) I would recommend going , as lots of lovely products to take home. And lovely to meet ladies to chat to going through simmilar issues. It does make a difference. I feel my friends and family don’t quite get the trauma of it all.
Vx
Hi all
Hope everyone ok. Well chemo is done and dusted for me now! I’m so pleased although the europhia that everyone expected me to feel hasn’t hit yet.
In fact I’m physically and mentally drained, which I expected. I have asked to be referred for counselling as so many ladies I’ve spoken to said they had been and found it helpful. Although as every day passes and I feel physically stronger, the emotional side is getting slightly easier.
I guess I just wanted to post to say it’s so normal to feel like this at the end of treatment and last week I was very low but I am on the up now. My local Heals centre can refer patients for Nordic Walking sessions so I did my first one last week. Highly recommend it. Felt good to be in the fresh air strutting my stuff feeling good but probably looking a complete plonker as my coordination levels leave a lot to be desired! I also start Pilates next week so I’m looking forward to that too.
Good luck with he rest of your treatments ladies . I do look on here most days but don’t always post so I am keeping up with all your journeys xx
Hi lisad
Thank you. No radio to follow although I do have another surgery in Feb to put an implant in. However I am waiting for results of genetic testing which I’ve been told could be quite likely positive. But I’ll cross that bridge if and when I come to it.
I’ll have a look at the link
Thank you xx
Morning Everyone - nobody has posted for a couple of days. I hope it’s because you are all well and too busy doing nice things to post on here. ?
Hi Dawn, Hope everyone is feeling better than I am! Since I had chemo 4, the first docetaxel I feel as if I’ve been hit by a bus! No energy, really bad back pains, skin rash, sandpapered tongue- I won’t go on! Had a temp spike last Friday (day 5) and had to go to A&E who were very good, kept me away from others etc. After multiple bloods tests, IV antibiotics etc they said my bloods were normal - hurrah so I wasn’t admitted and sent home with antibiotics. Nurse who did my line care yesterday said I’d been a bit unlucky with SEs so now on codine which I hate as it gives you constipation, senna, laxido (guess what that’s for!) rash cream, Difflam for mouth issues - a walking pharmacists. I do my last growth injection tomorrow so hoping to feel better by day 10. Or am I being over optimistic? Xx
Hi lovely ladies
I put my update on my experience of the first T on the August thread by mistake if anyone wants to read it!
Feeling very weak and it seems to hit me worst in the afternoons. Anyone else?
Trying to keep the end in sight - counting days.
Keep up all the interesting and supportive input…
Aine X
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…?
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
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…
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.
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
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.
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…
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!
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
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.
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
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.