Hi ladies
Hope everyone well.
Lisa, I’m pleased you are seeing your Oncologist and fingers crossed they can help more with the side effects. Keep us posted.
Rosie, for me the Picc has been great. I cover it with a limbo which I got on Amazon, you can get them free with prescription but I’d already bought mine. Exercise wise the things they tell you not to do are swim, golf and tennis whilst it’s in. Sleep wise no problems. I sleep on the side that it’s in and absolutely fine. To be honest I forget it’s there most of the time.
Sarah xx
Thanks Sarah - very helpful x
Well, I’m at D 17 in my first FEC cycle and was looking forward to a week of near normality and little treats…How wrong was I. As soon as my neutropenia time was over, some old dental problems started to flare up and now I have an infection. My dentist, endo dental surgeon and onc team now have to figure out what to do to ensure I can have chemo 2 next Tuesday. My face is swollen and my head is aching due to losing my hair (remainder is going today). It’s crazy but this set back has upset me more than it should. I guess I feel my week of feeling normal has been stolen!
Has anyone else started getting issues only in the final week? I had very few problems with the chemo itself, only really nausea and indigestion plus a little tiredness…
Well end of rant and back to the round of appointments.
Apologies for the radio silence these past few weeks.
The first couple of days after my 1st FECT (Docetaxcel) session on Monday 19th were great, I even managed to work. My experience since then hasn’t been so great.
I had awful stomach cramps and joint pains from Day 3 onwards, constipation followed by diarreah for a week, followed by a high temperature and low white cell count (I had the Neulasta injection). I was admitted on Day 6, spent 3 days on IV antibiotics and finally released late on Day 9 with more antibiotics to last me the week.
The stomach cramps gradually improved, however I felt tired and unable to do much until Day 14. The start of the 3rd week for me was a revelation, I had had more than 2 hours sleep and felt so much better, I met with the Oncologist and he reduced my Cycle 2 dosage by 20% which I had on Monday. The side effects are starting again this afternoon, just hoping they won’t be as bad as last time.
I am really grateful for all the comments and suggestions re: hair. I did the cold cap which was fine on the 1st cycle but much more hard going on the 2nd cycle this week, maybe due to having thinner hair on top. My hair is shedding at the moment, rather than clumps and is so thin on top, so I could well be making that call to the hairdresser in the next few days and my wig and headwear will make an appearance very soon. Thank You Steph for your last note, I think I may feel the same way.
I hope anyone experiencing SE’s starts to feel better very soon.
Big Hugs to all.
Hx
Hi Ladies,
I am now day 6 of 2nd cycle of FEC. Have cold capped x2 but hair now thinning a lot. I had lots of thick dark hair before and I miss it! My veins are a bit sore today and I keep knocking my hand ( had FEC via cannula). Oooch! However, today I went to a pampering session at my hospital called “Look Good Feel Better”. It was really good. I think there are quite a few hospitals nationwide who offer this, so check it out. I met some other lovely women all at different stages of their “journey” and the lady next to me has invited me for a coffee! I was given a lovely Goodie bag to take away with skin products etc. Not really into make up etc but came away feeling better and less alone. Wig fitting tomorrow… , may just try to master the scarf thing. All the best to everyone.
Elaine
Hi everyone!
Just did Cycle 2 FEC on Monday. Got EMEND for 3 days plus usual Ondansatron and Dexamethazone for 5 days. I had really bad nausea on Cycle 1 and I really think EMEND has helped. Im a lot less nauseous this time.
I also bought SEABANDS this time and am wearing them.
Rosie Ro - I got the PICC from the start. I wrap my arm tightly in clingfilm and put on the plastic sock. I keep my arm up in the shower to minimise water contact and it works fine. I have no bother sleeping on that side. I also have no prob getting blood pressure taken on top of it just keep the catheter part out of the way
Sarah see above
Steph I am struggling to hold on to my hair. 5 days ago I tied it in a wee ponytail at the nape of my neck and kept it in with lots of clips. I have not taken it out since and its holding my hair in place quite well. I said already I sleep on a silk pillowcase which I think is a godsend - no hair falls out at night. I think I will get away with this for the rest of the week.
I hate my wig. Its too blonde and too the one colour so it shines a bit. They had promised me it would be darker at the roots like my own hair but I was so flustered I didnt say anything. I am going to have to phone them tomorrow and say I can’t wear it.
Elaine thanks for the comments on the Look GFB session. I am now going to book into one - I’m told the free make-up is great!
I don’t know if any of you are fond of a wee drink! My mother gave me whiskey last night - she takes that if she is car sick! I had a glass neat and it certainly settled my stomach a good bit.
So EMEND has helped me this cycle. I also got Metoclopramide to take when I need to - nausea control - and it does seem to work well too. I took Cyclizine the last time - turned me into a zombie for days - too severe.
I am going for lots of short walks even when i have nausea and the fresh air really does ease it when you are outside.
My next session is on Halloween. Last year my local hospital put up a cardboard Halloween skeleton in the front window for all the passing traffic to see - it was so funny!
Keep on keepin on ladies!
Hello
I had my 1st chemo on the 16th Sept. Had my 2nd one Friday just gone. Feel a little worse this time as I did’t feel too bad before. When I am feeling ok I can almost pretend I am fine. My hair has now come out and I feel very much a person with cancer… looking different to how I usually do, feeling unwell cos have always been healthy. I have a great wig which I wore out on Saturday and no one batted an eye lid however I went out in my headscarf and people did look. I am also amazed at how cold my head is without hair! My poor husband, all these years I’ve encouraged him to shave his off!!! Hopefully I will feel better by next week and I hope anyone out there feeling rubbish will feel brighter and better soon… Maggie xx
Hi all
Ladies who have/had Picc lines, do you know if you can go to the GP surgery for them flushing? Having problems with the District Nurses not turning up etc
Thanks
Sarah x
Hi Sue
Thank you. I’ve left a message for a supervisor to contact me so all should be sorted soon. I’d been missed off completely yesterday and twice running out of saline etc to be told the chemo nurses will sort it. As expected the chemo nurses said not our job which it isn’t. Hopefully I well get a good outcome tomorrow x
Just been to A&E (again) on the advice of the cancer team. Now I’ve got phlebitis in the arm used for my chemo because they’ve made a mess of my injections. Got oral antibiotics for now and have to go back for Intravenous antibiotics in 48 hours if it doesn’t improve or gets worse.
On the positive side I’m going to pick my wig up on Saturday ?
Hello Ladies, sorry to hear of all your troubles with nausea, hair loss, PICC lines and phlebitis. If it’s any consolation I shouldn’t have spoken too soon last time I posted, because I ended up being taken to hospital again on Wednesday morning following my third cycle of FEC, with nausea, diarrhoea, sickness and sodium deficiency nearly as bad as the first. Nobody seems to understand why, because I had the same anti-sickness medication as with the second cycle, and I had no nausea whatsoever that time. The only differences were that I had my treatment two days early, and I didn’t prepare as well (probably didn’t drink enough before treatment and there wasn’t time to have lunch before). I waited until I got into A&E to throw up in a spectacular way again! Fortunately this time the hospital caught the sodium deficiency more quickly, and were able to treat it with a saline drip, so it didn’t develop into anything worse, and I was able to be discharged on Thursday afternoon. The hospital has given me a 3 day course of Cyclizine to take for the nausea, and yes, you’re right Aine they have turned me into a zombie, but on balance I’d rather that than be sick, so I have carried on taking them, and will take the last one this afternoon. As that was the last cycle of FEC, I won’t have to take it again, but having read about the side effects of Taxotere and Herceptin I have decided that I do not want to continue with chemotherapy until I have had further consultations with the surgeon and oncologist about alternative options, even if I have to pay for them privately. In particular I want to know why I was not offered a mastectomy, and whether I can have one now instead of continuing with the chemotherapy as that is what I would prefer to do. I will contact the hospital about this tomorrow and will let you know how I get on.
Hi all
Haven’t posted for a while but I’m due my third round of TCH next week. I’ve now developed terrible heartburn and indigestion. Has anyone had this and can suggest any remedy? I’m sure I’ve heard that Omeprazole (I think that’s right) is good.
Thanks
Kath x
Hi Kath,
I’ve had really bad heartburn, indigestion and diahorrea. They prescribed me lansoprazole which has reduced the heartburn and indigestion but I sometimes use rennie and gaviscon if it still bothers me.
Hello all, hugs and quick get-betters to those who are feeling ill or have been unwell.
I’m on day 5 of cycle 2 and I seem to have tolerated it better this time round. I don’t know how much of that is because I was less anxious, tired and had better knowledge of how to manage symptoms, and how much was a lesser reaction but I am now crossing everything that cycles 3-6 don’t hit me like a charging rhino. I’ve still had a few drama queen moments but that’s because I’m generally very healthy and don’t deal well with illness! Also I think the change in weather has effected my mood because I too have felt a bit down in the dumps for a few days.
The Holistic Centre at my hospital rang the other day, I’d been referred by my BCN, and I now have appointments for massage, acupuncture and a LGFB session winging their way to me. I am looking forward to a bit of pampering and ‘me’ time because I have mountains of uni work to do and less than my usual oomph with which to do it! I have emailed tutors to ask for extra support and guidance because my poor old chemo brain is struggling to compute what I need to do and I want to make sure that my train of thought and what is expected are on the same lines!
Hi all
Thanks very much for the advice. I’m seeing the consultant Wednesday so will ask about your suggestions.
Blueash, thanks for information on neuropathy. I haven’t had any symptoms of that yet but I know now to look out for that. There are just so many side effects!
Hope you are all bearing up.
Kath x
Hi Blueash
Now that you mention watery eyes, I had conjunctivitis after second dose and it’s cleared up with drops from doctor. However it still doesn’t feel right and because I wear contact lenses it’s even more of a pain. I don’t find it particularly comfortable wearing my glasses with my wig.
I find that I keep adding to the side effects I have. The main ones in first and second doses were constipation and terrible stomach pain followed by diarrhea. Also mouth problems. I feel I did manage them better second time but still grim.
Kath x
So now I am having a PICC line fitted before my next chemo. Feels like it should have been done earlier as my arm was very sore 5 weeks ago but now I’ve made more of a fuss. Last week A&E gave me antibiotics for phlebitis (which is not an infection) which has had even more of an effect on my sensitive digestive system. Sadly the only time the PICC can be fitted is when I was booked to attend the ‘Look good feel better’ course so I will have to reschedule that. I’m getting really fed up with this chemo lark. Don’t feel that bad I can do nothing most of the time, but haven’t the energy to do much. I got my wig last week despite cold capping but the fitter wouldn’t thin in much because she said that if more of my hair comes out the fit of the wig will change. Trouble is it looks rather false as it is and people have noticed it’s longer than my own hair. Everything seems to be dependent on something else and nothing seems straightforward. Grump! It seems it’s that time in the treatment when everyone’s feeling fed up. Perhaps I’ll have some chocolate and a glass of wine or whisky.
Oh Madmac how terrible! But I have to confess to mentally cheering your reaction and would like to think I’d respond in a similar way. I’m only 5 foot 3 but I do wear heels!
People can be terribly insensitive though.
One of my fun wigs is long rainbow curls and even though it is only a fairly cheap one from eBay I have had people ask if it took a long time to dye my hair like that!!! I pick up my “proper” wig on Wednesday so hopefully that looks as realistic, if less colourful.
Hi everyone!
I am having a sleepless night and have been catching up on your entertaining and informative posts!
I am on day 8 of Cycle 2 and have been unbelievably weak this time - I’m shocked at how little I can manage to do.
Thanks for the tips on heartburn and indigestion - I am suffering from these now too and will take advice on board.
Emend worked brilliantly for me this time and my nausea has been controllable - I recommend it highly.
I’m completely disgusted at that bus driver - give her a fool’s pardon.
I am trying to face the hair loss problem. My hair is tied in a low ponytail and has completely matted and really looks bad but its still on my head. I feel the worst part is being bald for me. I am going to cut it off this weekend.
I sent for a headcovers wig and yes I had to pay £15 cash customs charge to the postman who delivered it so be warned.
Its a good one though - for under a hat and has no top part - looks like a monk’s hair!
Dawn good luck and try to see the big picture before making any decisions. X
Keep smiling girls!
Aine
Lisa, you look lovely both with and without your wig; such a beautiful smile.