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
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
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
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
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 understand:). 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
A
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
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
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
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.
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
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.
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.
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 ???
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…
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
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.
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.
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
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
<li-spoiler>:smileyhappy:</li-spoiler>
Dawn - I’m so delighted for you. What a lovely Christmas present! Have a lovely Christmas. Xxxx