Oh I’m so sorry to hear that, but I’m glad they’re on top of it though 
do you have a change of drug combination because of this?
Welcome aboard the May thread, we’ll be cheering you on all the way xxx
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Yeah, they’re basically starting afresh with it and I have a new drug combo with a new schedule and a fair few months added on to my treatment plan, which is obviously disappointing, but they have moved quickly on it since the recurrence was confirmed and are optimistic about getting a good outcome so far so that’s a positive.
Thank you so much for the warm welcome. I hope your treatment isn’t being too rough on you! x
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Commiserations on the shaved head. I spent nearly all of Monday in bed after shaving my head on Sunday afternoon. So depressing.
And then just as I picked myself back up and started to get used to that, I now no longer look like I have a shaved head, I look like I’m actually balding! When I look in the mirror, all I see is weird looking back at me. 
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This whole experience is ever changing isn’t it? I hear your frustration with the additional treatment. Originally I was a lumpectomy and radiotherapy only, then I had a mastectomy, now chemo, then radiotherapy, all for longer than planned 
I’m feeling more unwell today with nausea, but also my face is quite warm, puffy and red. My op scars are quite sore too. I had expected to feel off a couple of days after the treatment, so I’m having a quiet day under a blanket on the sofa, maybe even stay in pjs as they’re comfy 
And now to stop moaning 
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An absolute rollercoaster! I also originally had a lumpectomy but I’m potentially looking at a mastectomy after this chemo is done.
I had a puffy, red face, nausea and extreme fatigue after my dose of EC, but they all did get progressively better and were gone after a few days. You enjoy your lazy day and feel free to have a jolly good moan if you feel like it! Take care. x
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Ah thank you for your words of reassurance, that makes me feel so much better!
My friend had a similar outcome like yours and had a mastectomy after a lumpectomy. I have embraced my mastectomy, but it’s a big op, however, recovery has been straightforward. There are also several options for reconstruction or not, which is brilliant. I’ve decided to stay flat, but I was amazed by the choice 
You rest up till the 22nd, and we’ll be cheering you on when you need it xxx
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Hi want2beme, thank you for that!
Were you told your IPLC was an aggressive ‘rare’ variant/subtype of Invasive Lobular, or were you fobbed off? My surgeon certainly sidetracked the issue before scuttling out of the room! I’ve still got no answers, 5 months on.
Yes, had a Wide Local Excision and Sentinel Node Biopsy back in January, clear margins, but one of three lymph nodes had been naughty, hence Letrazole, chemo, radiotherapy, bisphosphonates and CDK 4 and 6 inhibitors after that. The oncologist said that would potentially extend my life 5 -10 years. I said ‘I’m not sure I WANT another ten years!’ ‘Don’t worry, you’ll probably die from something else during that time!’ he replied. Yes, all the blasted drugs you’ve shoved into me, doubtless. But not breast cancer, so you can pop me down as a ‘ success’ story on your particular records! Yep, I’ m a cynic.
I won’ t ramble on longer, but wish you the very best with your treatment, whatever they’ ve got lined up for you. Thank you so much for the welcome!
And thank you to daffodil_dream for your kind words too! What a smashing lot you all are. I wish all of you the very best on this rollercoaster with it’s ups and downs. And we never even paid to enter the fairground, did we?
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Hi alannah172,
Was just reading about your post chemo nausea, pretty common side effect isn’t it? I think keeping well hydrated is the way forward, someone mentioned that but my brain’s like fog today, so I’m not sure which one of you it was - post first chemo day three!
I’m drinking a ginger cordial, diluted 1:10, so 50ml concentrate to 500 cold water, Ginger is really good if you’re feeling icky-sicky and it’s really refreshing and a pleasant change from endless cups of tea or plain tapwater. I’ve not felt sick at all, so far.
Start my bellyjabs tonight, so that’s making me feel a bit shaky. I’ve done similar before, for postop knee surgery, but that was 15 years ago, and the needles were much smaller. Good Luck to everyone jabbing themselves today, here’s to us all being experts by Sunday!
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Thanks for you message @bea4 yes similar story I wasnt told it was Pleomorphic at all, the surgeon gave me a copy of my surgery results at my last meeting with him and sent me on my way, telling me not to worry if I read it 
Of course ive researched every single word of the report myself.
The oncologist didnt mention it either, I should have asked more questions, I will next meeting, but he did say chemo is removing 20% of risk (now I dont know if thats 20% of 100 or 20% of another number) but I do know my risk of recurrance is high. Im premenopausal so Id say im in for alot of drugs in the years ahead. But il take it to see my kids grow up. I had a double mastectomy, 12cm cancer in left and a tiny 4mm in right. 9/9 nodes removed were positive. Surgeon said chemo and radiation will mop up anything left. Certainly a rollercoaster, im feeling like a 1% (pleomorphic)of a 15% (lobular) type. Who knows what the future brings. But first to get through the next 4-6 months of chemo/radiation and get myself on a well deserved holiday
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Hi want2beme,
My suspicion is that they know so little about invasive pleomorphic lobular BC but dont want to admit to it, certainly not in front of a patient! My surgeon, when I said ‘That’s very rare isn’t it?’ just replied, ‘ It’s not the most common, just a variant of lobular, pleomorphic is just a word they use…’. Yeah, right. And that was that. It accounts for 1% of ILBCs, which, in turn, account for 15% of all breast cancers. Makes it pretty rare in my book!
Trouble is, it’s not really been researched or trialled simply because it IS so rare. Nobody’s fault, but there aren’t enough of us to warrant the expense. Similar with ILBC which hasn’t made any treatment advances in half a century, as far as I can tell. So we’re all ‘hit’ with the same range of treatments, give or take, and baffled with percentages to boot.
I do hope you get through all this, for the sake of your children and everyone who loves you. At least I’ve had my life, so I shouldn’t grumble.
Just done the first belly-jab - easy enough but I reckon it was a mistake to read the huge leaflet outlining all the possible side effects! Honest to God, if the pleo doesn’t get me first, the paranoia will!
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Welcome to @bea4 @sharync and @mssteel . This is such a lovely group. 
.
We love, and respect, grumbles as well as successes. 
. Thankyou for sharing your stories. Would be awful to not be able to share the tough stuff. Chemo and treatment is tough. Diagnosis is tough. But sharing gets us all through it. So speak as you feel. Xxx
So glad @alannah172 that your first session went well. And yes shaving head is tough. 
But id rather that than clumps in the bath and bed. I use my wigs/scarves when I go out. Even though I have a PIXIE. I just feel more comfortable. Plus the weather is freezing 
so they make me warm
Cancer Hair Care provide FREE wigs. So check them out. They are lovely. And they support you through hair loss.
All your symptoms are almost identical to mine…red face, cheeks 
nausea, but not sick, on and off less appetite garbage fatigue constant , PICC bleeding and stabbing daily . Bleeding tongue once, wobbly woozy a lot
What Ive done (have no idea if it helped but I think it did)
:
Eaten light meals, plenty of mixed protein types (fish at 4am
), veg/ fruit (lots), carbs, . NO fry ups
sad loss. .. Ive never really “wanted” to eat, but I DO. I can still taste food which is good. Homemade Smoothies (4/5 fruits) for breakfast are a good start to the day.
Took main anti sickness first 3 days. But I had another type “as and when”. So I took 3 extra days of 2 a day. Even though I DIDNT feel sick. But today Ive had none. Ive been fine.
Lots of:
juice… mixed (always ginger cordial with root ginger added), water/milk/smoothies/herbal teas. NO coffee/tea. Sick of going to the toilet 
but Ive felt better washing out the chemo drugs. Really needed to drink.
Felt I have TOXIC blood…. 
PICC pain….Seems it takes 3/4 wks to BED in!!! . It has tiny hooks at the end which are what stabs us. The hooks hold it in place. I have NO love for the PICC. I hate it like i hated the drain. But, it makes treatment easier.
I struggle with LIMBO so ended up with cling film and quick shower. LIMBO is really rigid so I feel I am going to pull the PICC out. I asked the Nurse at PICC cleaning today…re ideas to use it… She replied “ I have no idea. I havent seen one for 10years. Its the Pharmacists who give them out” .
I cant sleep on my sides with PICC (L)and bad lymph removal pain (R) . I hate back sleeping 
. But I did roll over 3days ago and I ended up with 3days of pains around my chest/collarbones. Unnerving but its fine now. . Wont do that again. So now I jam myself in with VShaped pillow. Lay like a corps.
Fatigue …. 
Chronic, as I also have M.E. rest rest rest rest, as much as possible. If you can,( hard for young mums, and those working ), but if I didnt rest/sleep, I would crash.
So eg. Today I came home from the Hospital ( my new day out ) ate light lunch, drank loads, then bed for 3hrs.
The bed that has saved my life? An old adjustable bed from charity shop. Its been a game changer. Just sitting up abit helps. But you can buy mattress wedges from Disability Websites. In fact Ive embraced being hopeless. Ive bought: bath board; bath Support bar; step for bath and bed; Mainly because I was worried about fainting, as I live on my own. So putting in aids means I can sit, or support myself, if I feel woozy in the shower etc. Its a bath shower so I have to step into the bath.
Bought new Freely TV for bedroom. (Luxury).
Bleeding tongue….fine. soft toothbrush and told to swish with vitamin C effervescent tablets (do not drink them though, just swish). They initially advised pineapple but that MAKES my lips bleed . Hence the Vitamin C.
Today, Now??? I feel a bit better. Less symptoms. Still tired( But that is the new me anyway). But less TOXIC.
I am aware chemo is cumulative, hence hair falling out/bleeding tongue etc, but if the symptoms ease after treatment even a little bit, that is doable. 
not easy though.
And my heart goes out to @mssteel having to have more chemo. So sending you an extra hug.
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Ps @alannah172 re bleeding PICC.
Mine has bled every day slightly about 1cm round entry.
I had plaster changed, PICC cleaned of blood, as an “extra” this week.
Then cleaned again today routine appointment. The Nurse said they can bleed and not to worry. The dressing keeps it sterile.
However, if in doubt RING 24/7. Xxx
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Thank you @poppy261 for your update and advice 
. I’m so glad my symptoms are like many others.
I’m about to do my first jab in about 20 mins and I’m so anxious, but I’ll do it as I have to
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Oh also @poppy261 the nurse and doctor said that I could sleep on my picc line side! So I’ve done that but stuck my arm out in front of me adjacent to my pillow and laid my head on the v pillow so that the picc line has nothing squashing on it.
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You can do it. Grab a chunk of flesh away from your belly button. At least two three inches. Avoiding veins….read instructions.
Its so supa sharp it goes in really easily. I hate injections. The initial stab made me “think” it was yeuk but it wasnt.
You do need to change areas if you have five. But someone mentioned skin numbing cream from pharmacist which seemed a good idea. Xxx
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Mmm re PICC, Im jealous . Thats a positive you can hold on to
I did what you did, but sadly it made it worse for me. 
It may depend on all sorts. Nurse told me not to as it made my chest painful. . May be influenced by vessels etc. i guess we are all different physiologically. Ive got Sleep Envy Mow 
.
Grab what works. Thats what I say. Xxx
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Shout out for @want2beme . I think you are truly amazing coping with all that you do.
I am rooting for you for next week.
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I did it and it was ok 
Thank you for your advice
Ahhh I’m sorry that the side sleeping isn’t working for you. Perhaps try again further down the line when things might feel better, you never know
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Yeh well done @alannah172 
You enjoy those night sleeps whilst you can. Have one for me as well. xxx
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Re Nails: some posts on other threads mentioned an expensive cuticle oil that helped a lot during chemo. Bought Online.
Sadly I never do online purchases.
However, my Oncologist told me to get clear nail varnish.
So, I am using:
From Boots:
Sally Hansen Vitamin E nail and cuticle oil ….I massage this into nails daily.
Orly Breathable Protein Boost. Nail strengthener. I put this on like nail varnish. It dries hard, but is clear.
I have no idea if these will help save my nails, but the lovely lady in-store’s Mum had cancer and she used similar products.
The only item I am not using is any nail varnish remover containing alcohol, as alcohol dries nails. Strange as some nail varnish removers promote that they DONT contain one harsh ingredient (cant remember the name ), so are suppose to be better for people having chemo. BUT the small print says they DO have alcohol. . Which I thought was abit confusing. 
Im just going to keep the Protein Boost on until it grows out. But during chemo I top it up. May end up with a brick on my nails as it gets thicker 
Since I am totally clueless with nails generally, Others may have more extensive knowledge on this subject.