Oh no Reddi! You sound like you had the same patient next door as I had when I was hospitalised for low neuts! He was shouting "kill me" "help me" and "Mother are you there" all night long too.... I thought I was home and dry when put in a single room but hell no...I think every trolley that went by clattered into my door and the lights.... grrrrrrrr.... hope you escape tonight... and watch out for anymore scabby monkey! I'm sure CDC can sympathise with the alarms on the dressings, I seem to remember she had fun with them too!
Well I finally met somebody at Radiotherpay who was in my age bracket.. we have both had BC, masectomy and 6 x FECT. Unfortunately she had BC 10 years ago and had a masectomy then and this was a new diagnosis in the other breast but she has now had the other breast removed and has chosen to remain flat! She was so pleased to be matching finally and said she felt quite pressured to have recon but it wasn't for her. Nice to talk to someone else in the same boat. We compared nails, hers looked pretty much like mine and she had lost a couple and some toenails too eek. We discussed hair.. shes still wearing her wig as hers isn't growing much yet and we had a good old moan about Docetaxol! Oh and she suffered from the neuropathy in her fee & .fingers and had trouble walking, and they are still sore but improving! She even finishes her radiotherapy on 19th too. Made a change from chatting about prostrates!
Well done Reddi! Glad you are feeling ok, hope you get home today, nothing like your own bed is there.
Oh Dear Sally - another CT scan, whats that for, radio?
Oh dear CDC, I know those knees! Today mine are so stiff and sore when I get up from sitting or try to go up/down stairs. I don't know if its chemo, tamoxifen or just the menopause or possibly all 3. I;m currently walking around with a heat pad stuffed down the back of my jeans on my lower back.. not a good look!
Forgot to say, I also got a phonecall from teh physio department and they are passing me over to the lymphodema clinic for some physio as they are the best placed to offer advice apparently. So still nobody has actually looked at my arm as yet and don't know how long I wait for an appointment. Woke up today with horrendous stiff legs, back, bottom again... I thought it was getting better.. am really beginning to think the chemo has brought on rheumitism/arthritis which is triggered when it gets colder... already feel 100 now I feel 150..!!
Hi CDC - I haven't used any hair chalks yet, but might invest in some.. still working on updating the profile.. watch this space!
Didn't get to have my radio yesterday as I got a phonecall mid morning to say the machine was broken and the other one was in pieces being serviced and they had a 4 hour waiting time. I was offered to either skip a treatment (didn't want to risk that), add it on to the end (didn't want another day added) or go in on Saturday morning.. so Saturday morning it is...not ideal as I have so much to do, but didn't dare go for just 14 sessions. What a nightmare, but it was good to have an afternoon off, especially as it was my daughters birthday! Didn't fancy laying there thinking "14 years ago I was having a baby.. now look where I am!".
Sally - that is a long wait to decide to have Radio isn't it!
Hi LJ, lovely to hear from you. Glad the Rads are ticking off albeit with a nasty journey added in. I'm on No 10 today of 15 so getting there too. So far so good, no soreness or anything just the annoying visits every day. I keep checking and waiting for something to happen, not even sure exactly where they are pinpointing the radiotherapy but just know its chest wall and collar bone... no signs of anything yet.
Your nails sound exactly the same as mine.. the horrible colour and the ridges. As the horrible bit gets to the top it breaks off so am hoping it will just grow out eventually. I keep them painted because I look like I smoke 100 a day if not! Not a good look when you are having radiotherapy is it.
Glad to hear your hair is coming on nicely too, so nice to have some again itsn't , almost dont mind the white.. everyone tells me it suits me.. not sure on that front but its hair afterall. I keep trying to update my profile picture on here from bald to skinheard.. not having any luck yet! IT brain not working as it was I think.
Morning ladies. I've been rather quiet lately - the travel RT is pooping me out and I've just not had the energy. Day 13/20 today so the end is somewhere in sight! How is everyone else doing on RT?
My hairdresser put a wash in, wash out colour on my hair five weeks after my last chemo. We went for that as it was gentle with no ammonia or peroxide. All has been good with no adverse effects. Regrowth is good - the parts which really thinned on the top of my head are much thicker and my scalp is no longer visible! But my hair was really before and grows like weeds. Another fan of the Lush shampoo bar too.
On the nail front, mine are holding on, albeit not without problems. From the tip to about halfway down they are yellowy which I presume is the result of FEC, then after that I've got three ridges which is the result of T. Three nails are showing signs of detachment at the tip, but not all the way across. I've clipped them very short so there's practically no free edge and am keeping them painted with colours that don't allow me to see through so I'm not tempted to fiddle! I'm also using latex gloves whenever I'm doing anything houseworky or food related to limit the amount of times I get my hands wet. Am also rubbing Lush's Lemony Flutter cuticle butter in at bedtime.
Hi Sally, mine started to grow when I was having the 2nd lot of Docetaxol, which was about August time. Since finishing chemo it has just grown quite quickly. I have been using the Lush "new" soap bar which Shi recommended and was even using it on my bald head! Not sure if thats helped or not. I did have very thick hair before all this and it grew quickly so perhaps thats why. I think from research everybody's grows differently and at different times. Did you have FEC-T? Sorry can't remember?
I lost the tip of a nail today, just the horrible white bit, so hoping the rest will just grow out now. Must try to paint then tho as they look like a mouse has gnawed at them.
Wow hair chalks hadnt thought about that.. im As white as Philip Schofield!! mynails are still in tact bbut the end white bit got progressivly lower but thet dont hurt, imI just cuttjng them very short and hopjing to grow out the ridges and nastiness. Heres an update in the hair....
A quick fingernail update -- specifically for @Georgie Gee, who asked some time ago, around when her chemo ended. I know her oncologist helped to trial Polybalm at her hospital. (How are you, Georgie Gee?)
My Polybalm experiment wasn't perfect, since I got my tubes about halfway through my first docetaxel cycle, and typically only applied it 1x/day (rather than 2-3x as recommended). I topped up with cuticle oil, especially to my fingernails, as this was slightly more convenient and cost-effective for me. Because of my elevated liver enzymes between FEC and T, I also never had a 100% docetaxel dose -- instead I had 75% x 4 cycles, with the 4th cycle added for my HER2 antibody infusions.
In any case, my nails seem to be surviving well, on day 24 after final cycle. Still a chance I'll lose some -- right thumbnail, in particular, is sore -- but so far, so good. [If you're curious for more details, see my post in the Dec '18 chemo starters forum. Didn't want to post too, too much here since I know quite a few of you are struggling with your nails. ]
Keeping your feet up is a good idea Reddi- I’ve probably mentioned it before but I had to moisturise my feet without rubbing too hard then wrap them in cling film before putting them up! It did seem to help but I was meant to do it three times a day which was impractical!
I remenver - your chemo was new-adjuvant wasn’t it so Its good they are getting on with surgery now.
I really will be thinking of you, I will lose my nipples on both sides as the remaining cancer cells were found underneath the one on the right and they have to cut around where my previous scars are anyway so the nerves won’t survive. I don’t remember having an ECG before surgery but I did have one prior to starting chemo. I really will be thinking of you on 13th. Take Care and hope your hectic week is not too stressful xx
Great news Reddj, ill have everything crossed for good results all round so you get to keep the nipp!e!!! Youve made me intrigued... Whats the no present plam? No presents for anyone orminimal or what?? Sohnds interesting... Ive not finished my shoppjng as yet so some might not grt one anyany!!! A few years back my SIL and brother and myself and OH all decied to only spend £5 on eaxh orher,.... Its actually good fun seeing what you can get!
Sending festive wishes to you too
@cdc Brava on speaking out at the conference. I am glad to hear that you are hoping to participate in future panels -- even while you are still undergoing treatment. 🙌
And... 🥁🥁🥁🥁 My surgery date has been set: this Thursday, 13 December! (Assuming my bloodwork shows that my immune system is adequately recovered.)
I am going forward with WLE on left and nipple-sparing mastectomy on right with immediate reconstruction using a prepectoral implant. If the tissue sample from the nipple on my mastectomy side comes back positive for cancer, then I'll have the nipple removed but keep the areola and the implant. If I'm one of the one in ten whose implant doesn't take, then I'll have to have it removed; there are a range of options at that point, and I've decided to wait to consider which option to take only if I face that situation. The left side is trickier, should the surgeons not get clear margins: my gut is to do a re-excision rather than go straight to mastectomy, but I may feel differently on the other side of surgery. So I'm going to wait and see for that, too. Right now, the plan is for radiotherapy on the left only, but that might change when we have the results of the pathology report after Christmas. Best news: I'll only have drains on the mastectomy side. Hurrah!
@Kip et al. I'm not sure when I'll start hormone therapy. Soon, I hope. Although the side effects of tamoxifen etc. are daunting, hormone therapy really is the best treatment for reducing risk of recurrence if you are ER+. (As far as I know, I wasn't tested for hormone levels before starting chemo either.) I was told early in the process that the newest research is suggesting that extending hormone therapy beyond 10 years probably makes sense for women who are younger when diagnosed; but 10 years is a long time, especially in medical research. Who knows what new studies will find about the mix of tamoxifen versus AIs, or what new and improved drugs might be developed.
@cdc When you got the blisters on the soles of your feet, at what stage in your cycle did they show up? I strangely developed blisters across the ball and heel of both feet on Monday (day 18 of cycle 7), worsening and sliding up the side of the foot that has some ground contact on Tuesday, receding slowly from Thursday. It seems so late to be getting a brand-new side effect, but I actually did less walking in cycle 7 compared to earlier cycles, and I'm not one to get blisters on my soles. I've been trying to keep my feet elevated and moisturized, which may be helping. I'd planned to ask the oncologist and/or chemo day unit nurses about it -- but then my oncology appointment got moved from this past Wednesday to this coming Wednesday, and somehow, nobody wrote my prescription for my first Herceptin injection. So my CDU appointment for that had to be moved to this Monday. By the time I see anyone, most of my blisters may be calluses.
Looking forward to the busy week ahead at the hospital: Herceptin injection Monday, more bloodwork Tuesday, oncology and ophthalmology Wednesday, surgery Thursday morning, discharge (hopefully) Friday evening.
Then 🎄! I overdid it this week and got a wee tree with my blistered feet, since that and some roast chicken thighs will be our celebration this year. (OH isn't a cook.) We've decided this year is the year to finally try our experiment of no gifts. (My parents and SIL have not agreed to this experiment, and it didn't make sense to insist on it.) There will, however, be chocolates.
I know many of us will be super busy over the next couple weeks, so taking the chance now to wish y'all a warm & wonderful holiday and an abundance of good health & happiness in 2019!
CDC Did they say if the reconstruction would be effected by radiotherapy if you need it? I start radiotherapy on the 17th for 4 weeks. As my tissue is dense it should have less effect but probably not the case if you have had reconstruction. I went to an open evening so saw behind the scenes of the radiotherapy department. Glad that you are happier now with how things are progressing.x
Hello Clare, glad to hear you are moving forward in terms of next steps. Intersting that you had a blood test to ascertain your menopause status... I never had anything! I know how you feel about taking the tamoxifen. I stared at the box and read the leaflets over a d over before committing. I take mine at about 9pm as i tthought if any major side effects i may sleep through them. So far i am gettjng the odd hot flush, probably no more than i was during chemo, odd one during the night but not extreme. I also have the aches and pains which can be attributed to chemo SEs but also menopause and tamoxifen. Ive read lots of threads on here where women are having the aching since being on tamoxifen so its hhard to work out what is causing it. I am taking magnesium and zinc supplements as advised by my Onc nurse and the aches are definitely improved. Apart from that no other problems so far. I have read that some people find different brands effect them differently so its a bit of a wait n see i think. Enjoy your nights out before you start then uou can enjoy them without worrying.
Hi KTK, so far so good with me, only had 6 so far though. No soreness or itching but my arm on that side is very stiff and gets quite tight, so interesting you say you've had to up the stretching too. Sometimes I get tightness right down to my wrist on that side and have to really stretch it out... I think I am going to pop into the Breast Clinic in Monday after Rads to see if someone can check it out for me, the seroma seems a bit larger too and that was really disappearing before rads started. Otherwise its ok, bit tiresome and I hate being back in the hospital amongst all the signs for cancer etc... just want to be out in the real world and trying to forget (wishful thinking). I'll check I have some piriton ready in case I need it then.
SallyG - what a disappointment with the prosthesis. I'm going to attempt to get one after xmas when Rads are complete, although I am quite comfy with the Knitted Knockers but would like to see what a proper one looks/feels like. Frustrating for you to be over looked for the mammogram too, bloody nightmare, just what you don't want.
Thanks Shi.. still no dancing in the rads lounge but I think I am about 20 years younger than everyone else there.. bit weird really. I got to know all about the man next to me's bowel cancer.. never thought I'd be doing that this time last year!
CDC - You just popped up on my Facebook page.. . I joined the facebook page for Breast Density Matters yesterday... how did it go! You look great by the way!
Rads No 5 today, all going well, no problems so far. Aches and pains still with me but I think they are improving slowly.. either that or I am getting used to them. Either way I'm feeling ok at the moment. Unfortunately my OH has a colleague whose wife is starting chemo today for breast cancer.. she is so scared but not happy to talk to anyone about it at the moment..I've been sending him tips and this site too and he's reading up for her. Poor lady is in denial about the hair loss and the hospital have advised her to cut her hair short asap before it starts going. Sadly her 2nd FEC will take place on Christmas Eve... how unfair... It brought it all flooding back to me.. that first trip to chemo...she's having FEC-T x 6 and is HER+ too. So thinking of her today and re-living the chemo..
OMG that is fab CDC... daunting I can imagine but very important and like you say there will be others in the same boat.. I can just imagine you all having a little siesta half way through. Sorry to hear the neuropathy is still being a pain (literally)... I imagined I would finish chemo and bounce back... seems it doesn't work that way. I did some searching and reading on this site yesterday regarding Tamoxifen and its side effects and there are so many women all having the same aches and pains as me and all on Tamoxifen too, it has to be that and the induced menopause that does it. Apparently you need an amount of oestrogen for your joints/muscles and when they suppress it, you can suffer the aches and pains. Not sure how you address it though, some ONCs seem to agree with it some just say its not related. A friend told me that she knows of ladies who suffered this way and it settled after a few months, so I am going to try to continue with the Tamoxifen for a while (haven't even had it a month yet) and also give the chemo and rads time to leave the system and then address it. Apart from the aches and pains I feel fine really, I'm sleeping better, still waking up like a 150 year old but at least getting some sleep. I think the Epsom salts do help a bit, they certainly relax me and get me ready for bed if nothing else. I am also taking Magnesium, Zinc and Vit D to see if that helps, and somebody suggested glucosamine but I need to get these checked to see if I can take them with Rads. The chap doing mine yesterday didn't know but is finding out for me. So far Rads have been easy, no pain or soreness yet but expect that builds up. Its just so time consuming going back and forth to the hospital and I haven't even done Xmas shopping yet.. not sure when I can fit that in eeek!
Let us know how the conference goes...
How did it go today Kip? So sorry you’re still so achey. Do you think the Epsom Salts help at all? I was so desperately tired yesterday and for some bizarre reason my neuropathy is back and making walking for any distance more of a challenge. I think I’d underestimated how much I’d still be affected with SEs now my chemo has stopped.Was going to try and take it easy tomorrow but got invited Cheryl Cruwys co-founder of Breast Density Matters to take part in the Britain Against Cancer conference tomorrow. Gulp! Feeling daunted but excited! There will be other people going through treatment there so I presume the organisers will understand if we all end up having to sit down and have a nap!
How is eveyrone doong at the moment? Thinking of you all xxx
Ha ha Shi, perhaps I can enlist the prostate pals too! Got a full week of Rads this week, first one at 2.45pm today... still feeling ok with it, just these aching joints... omg... don't think I can do a good dance to Push It.. more like... "Achy Brakey" by Billy Ray Cyrus!
Unfortunately no dancers at my Rads so far... only the 3 "prostrate pals" ( my new name for them as they love to discuss their prostrates loudly for everyone to hear).. maybe I'll meet some new ones tomorrow? I had to keep myself busy with a jigsaw again instead.