I’m Jac and I’m due to start chemo on Weds 22nd Feb. Feeling a bit scared! I’ve read through the literature and am ‘just’ scared of the effect it’ll have on me. Seem to hear varying accounts of people sailing through and people suffering with exhaustion and nausea. I’ve got TNBC and I think I’m getting FECD…anybody out there due to start that as well or something similar?
I went for a wig fitting today and have chosen one. I was going to try to save my hair but the wigs look so good I figured I’d just let my hair go…it’s one thing less to worry about eh! - plus I colour my hair and need my roots done LOL so I’d look a sight by the time 4.5 months has elapsed!
Can anybody recommend anything to avoided mouth ulcers? I saw my dentist for a checkup and he wasn’t particularly helpful!!
Sorry you’ve had to join us but you’ve done the right thing by sharing your worries with us.
We seem to be on lots of different types of chemo. When you say FECD, do you mean FEC -T? Alot of us are on the fec at the moment plus I’ve already had 4x T (docetaxel ) last year.
Some of us are cold capping & some just going for the Mrs Potato Head look! I shaved mine off as I couldn’t deal with how sore it was!
There are lots of side effects that seem to hit us all differently so try not to worry too much. Fatigue is always going to be an issue with any chemo though. As far as mouth ulcers go, I haven’t had a problem with either regimen although with fec I’ve had sores in the corners of my mouth, just used Blistex really. Your team should be giving you mouthwash. Make sure you ask for it. My hospital gives Difflam which is great. I’ve also had rough gums but not really affected my life to be honest.
Do you have family to help you Jac? Having support is very important but if you don’t, then we’re all here for you! We have our own fb group where we can share pics etc. Feel free to come on over.
Jac sounds like you’ve got a lovely family! You couldn’t be any further away from me…I’m on the south coast!
If you search for Julie Owen via Totally Local Broseley (think that’s right) or search for me Jo Sheppard (I think mine will say Registered Pharmacy Technician after my name) & will get you added xx
Hi jac , im also tnbc but on 2 weekly ec .seems its very much down to your body tolorence .i had my first ec 2 weeks ago and been hit with alsorts even a infection .others on same chemo have had minimal side effects .Other than the great fb page jojo mentioned , there is triple negative warriors uk they are a lovely bunch who obviously all have tnbc and they are full of advice and how they handling all the treatment x
Currently have it , was at hospital today as i have chemo wednesday .They done extra bloods and urine test ,plus my temp was 38.1 when i turned up at hospital , they sent me home with antibiotics plus my wbc was down .Temp is still up , i dont feel ill as such more hot and run down .hoping antibiotics kick in soon , despite infection they are still going ahead with chemo which is worrying the hell out of me .Im having 4 ec then 4 pacitaxol then surgery depending on the effect the chemo has had and my brca results xx are you having yours first x
Oh my goodness you’re sure in the thick of it. I’m sure they wouldn’t give you another round if they thought it would make things worse.
I’ve to get 6 rounds then get my surgery. The breast surgeon told me if he operated now he’d ‘make a mess’ of my breast cos the lump is pretty big. I think he hopes still to do a lumpectomy if the f*cker responds to chemo enough to shrink it down.
I hope by the time you read this your temperature is under control again. Hope the next round goes ok. I’m trying to steel myself with the mantra ‘chemo is my friend’ !!!
Hi Jac
I like your style… it’s that friend like a stalker tho that you’d rather feel down a pit…
But yes Like you I’m trying to be brave and positive , it’s gonna shrink this massive tumour and leave enough skin for some small bump like boob that won’t scare my Hub , the kids … or me ?
I’m not clued up on tn as I’m lob duct thingy er her positive… so it’s 3 Fec -3 d or t … with herceptin too …
I’m a the sick one so come to me If you feel nauseous as I’m now the expert with my Nissan Micra sized syringe driver hanging round my neck 24 /7 … but it’s stopped the nausea so not complaining ( much ???)
I still feel rubbish day eerrrrmmmm 5 after my second chemo . They are 21 days apart … but I know it does get easier… i have 3 kids 4-9-10 and luckily as I’m unfit for anything my parents and Hubby are doing it all …
join the fb gang Hun if you can then you can see all our little faces xxxx
Same here jac , lump was very big so aim is too shrink and avoid full on masectomy plus i have to have lymphs underarm removed.If im honest despite how much the thought of surgery scares me , if i had to have a full mastectomy to keep me here then i would…as for chemo once you have your first one your get gist of what will happen and if meds they give you dont work , they will try you on new ones next time .my biggest fear is the infection side of things not knowing if id know if it was serious and get it sorted in time xx
Found you on Facebook Jo and I’ve done a friend request. I’m not great with technology so does that then give me access to your group?! Or do you add me to something once you’ve accepted my request? Doh I’m really not the best at fb etc!!
Do you ever try meditation or deep breathing Maria? I’ve tried to lie still and take deep belly breaths and imagine myself covered in glowing energy lol - I feel silly saying it out loud here but it actually does help me feel a bit better and calmer! I read somewhere that meditation can be a powerful ally in beating cancer.
Jac I’ve now added (& welcomed!) you to the group. You should be able to access it now.
As for meditation - HELL YES!!! I don’t do the sitting still type, find it virtually impossible actually, but most people don’t realise you don’t have to do it this way! I lie to walk & meditate. With lungs full of oxygen (O2 really helps our cells to repair). I’m lucky to live near the beach & can really forget about **bleep**e & hunt for treasure. I love collecting shells & belong to the #2minutebeachclean community. We clear beaches around the country of plastic & other rubbish (always find shoes!) That’s my way of relaxing. Yes I am a bit of a navel gaze (sorry not sorry)
Looking forward to hearing your story Jac!
I’m with you Jo on using walking to relax. Pre all this stuff I used to do lots of walking - nothing special, just in the local area, but I’m finding with chemo I just don’t have the energy most of the time, until maybe week 3. I couldn’t even manage to the local shops yesterday (15 mins away) without wanting to sit down but then I suppose it was day 5. So I’ve found some of the meditation music quite useful to relax me, esp during the chemo itself. I’ve heard that yoga can be very good for increasing oxygen levels and improving feeling of wellness, and depending on the type, is probably less strenuous than walking for miles.
Hi jo jo Thanks for inviting me to the Feb 2017 . I am having my chemp pre assessment on the 6.3.2017 I’ve already had lumpectomy with lymp nodes removes and reconstruction. I have er and pr postive her2 negative grade 2 cancer … not sure if that’s really bad … but feeling very anxious about starting chemo … still can’t belive this is happening. . I’ll ending hugs to e eyone one here xx love Angie
Hi Angie … welcome but sorry you are here …
I have grade 2 lob dc and lymph nodes. Not had the op as my tumour big so wanted to shrink it .how are you feeling after the op , and is the recon good ? Also how are your lymph nodes now … sorry for questioning I just so keen to get chemo done and have this stuff out of me xx
Welcome Angie!
I’m exactly the same as you except I’m grade 3. I’ve had 4x TC (docetaxel & cyclophosphamide) and surgery lumpectomy plus node clearance now on 2nd phase of chemo 4X FEC. 1 FEC down 3 to go! Then 4 weeks of rads & tamoxifen. Oh joy!
Everyone is nervous about chemo. Once your first one is out of the way you’ll feel a bit better in as much as you will know what to expect. Keep a diary of your side effects & how you feel & you can plan for the next cycle ie what days you will feel human for days out or work etc.
Feel free to join us in the Facebook group if you like! Or you could start a March starters board. I’m sure there’s lots of ladies out there who read posts but aren’t confident enough to speak!
Anyhoo it’s good to speak to you xx
Hi zena The operation lumpectomy removal of the lymph nodes and reconstruction was much better than I thought obviously iam still in some discomfort … but I was absolutely dreading it as you can well imagine … it’s just 6 weeks ago now but my breast surgeon has done amazing job even the district nurses said … what a good job he’s done … . The most painful thing I would say is under my arm where the lymph nodes have been removed but other than that ok … iam sure you will be fine x just make sure you do the physio they give you to do has that as really helped also iam doing extra physio on a trial which is called the Prosper trial. Which is hard at first but really good … … sending hugs xx love Angie xx
Hi jo jo Hope ypu are ok and thank you for inviting me to join the Feb 17 … AS far as I know the chemo is 3 Fec and than 3 T something 1 chemo every 3 weeks … then same as you tamoxifen for 10 years… The consultant said that because it’s hormonal that they might have to operate to remove my ovaries at a later date after chemo … not sure if any one else as been told the same . How to I find you on face book sending hugs xxx