Breast Cancer Now Forum

Well, no bell ringing or other celebrating for me tomorrow -- my mother was admitted to hospital today, and until my sister gets there (she's on her way to the airport now), I think it's going to be hard to glean just how critically ill she is. When her carer arrived this morning, she was not very responsive, and on admission her body temperature was about 33.8C. Having gone through chemo, many of us know how dangerously low that is. She has some slight pneumonia -- which is also dangerous for her, as she is on a ventilator due to muscular dystrophy -- and seems to have a fractured rib or fractured vertebra or compression injury of the spine or something (neither the carer nor my father, who has some dementia and is clearly shaken based on my phone call with him this afternoon, were able to follow the full contours of the conversation with the doctors). Now waiting for my mom to return from tests to CCU in hopes that there might be an update, or a chance of speaking with her via phone. I've been worried about something like this happening for the past few months, based on my sister's reports and skyping with my parents. An emoji doesn't feel right, but...   ... View more

Hi, Shi! I think June 2018 is a bit quiet because our conversation is split between May 2018 surgery and June 2018 chemo starters. (I'm posting in May surgery sometimes, even though I had my surgery in December.)    @RedRose Do you have a "first dance" song? ... View more

Hi, all! Sorry for the slow reply to all the amazing photos -- particularly when I was hounding for them! Just trying to get myself back into a work routine, and realized that I can easily get waylaid in here when I have pressing deadlines...   @Michelle21 Your photos are spectacular -- the bridge of prayer flags, in particular. I'm not a religious person, but I've always found myself drawn to the ritual of tying flags in the wind, to bless the surrounding landscape and living beings. I especially love the translation of the name for some of the Tibetan flags, lung-ta -- "wind horse." (Is it the same or similar in Nepalese?) Maybe they also remind me of some of the rituals I encountered during a stay with a Lakota family at Pine Ridge, in South Dakota, when I was finishing university, a visit that came at a time of a lot of soul-searching. But I think my favorite photo of yours is the one of the toilet facilities. It really gives a sense of the trek.   @Feenix You're coming home so soon! Home-cooked food sounds marvellous -- a fine accompaniment to your healthier fare. I'm making mental photographs for myself. I'm so glad that you're finally feeling recovered, too.   @Kip Scrunchie for the win! You are a swimming, hooping, flossing fitness inspiration.    @cdc How are you these days? During my radiotherapy review meeting today, I teared up. I can't even remember what triggered it -- I think it was when she asked if I had "any other worries" after going through the basic contours of the holistic needs assessment, and I mentioned losing the support system of frequent appointments. It is a big change.   Last rads for me is Thursday, 7 March. I don't think there is a bell on our unit, but in a way I'm glad: since I've got to go up to the chemo day unit for my Herceptin injection about 2.5 hours after I finish rads (too short a gap to go home), it would feel a tad bit farcical to me to ring a bell at that particular moment. I'll find another way to mark the occasion in the evening -- almost certainly involving 🥂 . Apparently, my skin is holding up remarkably well, despite how pink it is and how tender it feels. I've had some swelling and two pinprick blisters, which healed quickly over the weekend, but no other wounds thus far.  🤞   I've now got my trip to the US booked (thanks to my sister) -- heading over right after Easter and returning after the Early May bank holiday, squeezed between Herceptin and Zoladex injections. Of course, today I found out that the Moving Forward course is held at my hospital in May and November, and the first session of the next course is 2 May -- when I'll still be visiting my parents. I suspect I won't be allowed to crash into the second session, but boy, I'm going to try. ... View more

@maryKamille Hello from June 2018! I was told by my BCN to skip my six-monthly hygienist appointment during chemotherapy, as it was considered to be too invasive -- a *big* infection risk. I did see my dentist for a routine check during chemo, however. (I was told that I could gently use floss and interdental brushes if I wanted, but to keep a very close eye for any bleeding of the gums, and my dentist prescribed me some fluoride toothpaste -- Colgate Duraphat -- to help keep my teeth and gums in good condition.) Maybe double-check with your BCN to make sure that a visit to the hygienist is okay? Or to get some guidelines on anything to avoid while you're in the chair?   And huge hugs to all those now on T. 🤗 🤗 🤗 I personally found it harder than FEC -- especially on the day or two or three after I finished the double-dose steroids -- but that might have been the cumulative effect of chemo, not just the T-specific effects. Keep an eye on diarrhea: if it becomes frequent, call your hotline so that they can monitor possible dehydration, and possibly bring you in for a bag of saline. (Dioralyte is perfect, but it doesn't always keep up -- and essential to keep your kidneys safe and healthy, or at least, healthier.)   You're all getting closer and closer to the finish line!  💝 ... View more

So much news!   @Feenix No more food photos! (What I really mean: More food photos, please! Gah, that looks yummy.) I'm incredibly envious of the weather, too -- I love it when it's hot. How long are you there?    @Kip Your course sounds really interesting. I heard one of the BCNs in my department chatting with another patient about a Moving Forward course in May -- but they haven't mentioned it to me yet. I'm hoping my Herceptin injections don't count as active treatment; waiting til October for a course will feel interminable. I'm ready to start shifting my mindset -- and I'd love to have a goal-setting group help me on the exercise front!   @Michelle21 I'm in awe of your trek. What an experience. I wonder if the transition back to everyday life feels like a less pressurized relief or a somewhat boring letdown or a combination of both or something else altogether. I expect I'll have some combination of the two once I stop trekking to the hospital every day -- without the huge accomplishment or the amazing experience you've had. Are there any photos from the trip that you might share with us armchair travellers?   @cdc How is your stitch? I had one that seemed to be making its way to the skin, but then finally dissolved, so no need for the nurses to pull it out -- though it sounds like it's relatively simple for them to deal with, if necessary. And I also hope the little open wound on your belly heals soon -- it's being a bit obstinate! Otherwise, it sounds as though you're healing very well. For endocrine therapy, are you on tamoxifen only?    For me: 4 more rads to go! (As I said, I'm more than ready to be done with these daily hospital visits.) ... View more

@redrose Hurrah! So wonderful to see these updates -- and so sweet. 🌹 🌹 🌹 I love the combination of flowers (I'm another sucker for the scent of lavender), and they will look lovely alongside your dress and the red of the bridesmaids'. You look gorgeous in the dress both with wig and without -- if there's going to be dancing 💃 🕺 , I suspect the wig will go... at least based on my experience getting overheated in my wig whenever I'm ever so slightly active.    First booster rad today -- took nearly as long as the first 15! But I managed to just get a return bus within the 70-minute window for free "hopper" fare home. I love it when that happens.     ... View more

@redrose - More clamouring for dress news!   Sorry to have been quiet; I've been super busy between radiotherapy (day 14 of 20 today) and work stuff, and starting to feel and see the effects of the RT (poor little pink breast). OH's bone in his hand is healing well, so the orthos removed his plaster on Monday, but he must refrain from heavy lifting with that hand for another 4 weeks. Alas, that means I'm still in charge of launderette trips. Now that I'm starting to feel pain from RT, it will be interesting to see how this all washes out.  ... View more

@Seaside Sar June 2018 starter here, to say I was on antibiotics or antivirals at least twice when I had chemo infusions. If your blood results are off because of the antibiotics or illness, they might delay, but in my experience being on them wasn't a reason to delay in and of itself. My oncologists prescribed mine, so were aware, but they told me to remind them before next chemo, as I didn't always see the same oncologist at my hospital. So as Shi said, do take your pills in for your appointment, to be sure they know what you are taking.   ... View more

I'm so jealous of everyone's clinical trial options. So frustrating to be HER2+ on the one side (no MonarchE for me), and to be bilateral (no Add Aspirin). I am benefiting from the triallists who came before, however, particulalry the Text and Soft trials (the results of which are why I'm on Zoladex + AIs, rather than tamoxifen). Still, I'm such a science geek that I wanted to take part.  😞   Safe trials, @Feenix.  ✈️     @Kip Your hula-fitting comment made me laugh aloud. Why isn't there a hula hoop emoji?!??!   @cdc Congrats on no rads! (In case I haven't said it already.) Separate from the relief of a more imminent transition out of active treatment, I think you're wise to keep that tool in your quiver, just in case. One thing re: MonarchE -- it seems as though they want people who have had no more than 12 weeks of endocrine therapy. I don't know when you started tamoxifen, but you might need to make a decision about starting the trial quite quickly based on that criterion. (It sounds as though you're healing incredibly well, which -- beyond the blood test results -- would be the other factor, from what I've read.)   RT no. 11 done and dusted. Still no burns or blisters, but my skin is getting more tender. And the fab bra I bought to get myself out of sports bras is all ruined with marker (didn't come out in the wash despite pre-treating). Bummers. Otherwise, recovered from the bisphosphonates. OH is back at the fracture clinic on Monday to see how his bone is healing. I'm hoping I can get in and out of RT swiftly and sneak in to his appointment -- really curious to see the X-ray, as he and I disagree about which bone is broken. (It was about 3am when we saw the X-ray, so we were both pretty blurry-eyed.) Picking up all the chores he was doing has been wearying -- the launderette hikes, especially -- so fingers crossed the bone is mending well and he can move from the cast to a splint.   One other anecdote: It was my mother-in-law's 87th birthday this week, so I joined my OH for his weekly visit down to South London -- the first time I've seen her since my diagnosis. (I would have gone at Christmas except I didn't want to traipse down there with my buddy, the drain bag.) She kept saying how well I looked -- but also how I'd gained weight, particularly in my face! I need some cheek hula-ing! ... View more

Whoops - tried to write this 4 times and when I finally succeeded, I forgot to say: My liver tests were fine all through TPH, but I also cut my cheeky 1 or 2 half punts in week 3, just to be safe. ... View more

@Jayne1966 That is good news that your liver results are already improving! Back in September, my ALT liver enzymes spiked after my 3rd FEC -- and stayed up for at least a week, so my first TPH got delayed by 2 weeks in the end. As it happens, my doctors already knew I have several simple benign cysts in my liver, which may have added to my liver's unhappiness. And as pastasmissus said, "lesions" is used to refer to any growth or change in the tissue, including benign stuff. Fingers crossed it was just a chemo blip. ... View more

@Feenix When do you leave? Soon, yes? Here's to being 100% recovered from your cold before your long haul. (I copied and pasted the arm exercises you shared a few weeks ago so that I have them for the future.)   I keep wondering where @Michelle21 is at the moment -- I hope it proves to be a splendid adventure for her. Does anyone know how long the trek is? Two weeks?   Rads continues to be fine. I'm halfway through the first 15, before the booster 5. Exhausted today, however -- the bisphosphonates really did hit me on Friday and Saturday. I even had a fever at one point, plus a weird headache that felt like someone punching me in the side of the skull; it threw me a little off balance on my walk home on Saturday evening. Thankfully, it hasn't recurred, so I'm hoping that means my ear bones are surviving fine. (But, after my experience of chemo, it would be like me to get a serious side effect that's not the serious side effect everybody worries about.)   @cdc Hoping you get to skip rads -- but if not, I highly recommend diprobase. (My hospital gives it to us.)   @Kip Are you on Ad-Cal as well as tamoxifen and your Add-Aspirin? If you aren't opposed to another pill in the routine, I wonder if it might be worth asking about taking glucosamine to help with joints. I know the research is mixed, but it seems the usual dose doesn't have adverse effects. I guess there's a question of how it might affect the trial, though. ... View more

Hubris! Woke around 3am with the flu-ish symptoms and sharp joint pain. Took some paracetamol this morning, and that plus 1.5 mile of walking to GP and extra round the hospital seem to have me at tolerable ache. Ack -- called for RT. More later. ... View more

@Georgie - Well, so far, so good -- no obvious side effects about 8 hours after Zometa infusion. I'll report in again tomorrow! ... View more

@DiKat - Your first Perjeta and first Herceptin are loading doses -- so larger doses, taking more time. The docetaxel (or paclitaxel) isn't a larger dose, however. My hospital gave first TPH over 2 days rather than giving it all in one go. Personally, I found each one was a bit harder; just the cumulative effect of all the chemo, I think, but also perhaps that TPH 2, 3, & 4 were very long days at the hospital, even with the shorter infusion times for subsequent doses of Perjeta and Herceptin.   @Jayne1966 - Thinking of you, and sending good vibes for the little stuff to get easier as well as the big stuff. I hope you're able to take it easy and get some good downtime whilst your kids are with their father. ... View more

p.s. @Georgie - I'm also pretty sure that my perpetual runny nose is due to Herceptin. ... View more

@Georgie - I have my first Zometa infusion tomorrow (right after Herceptin injection, which is right after radiotherapy). I'll report back on my experience, but the combination of stuff will make it hard to tease out the cause of anything (also have Zoladex injection and start AIs on Friday).   A tip: @Feenix, from the May 2018 surgery thread, mentioned that she was counselled by a fellow patient to take some paracetamol before Zometa to help with the flu-like symptoms that can sometimes hit. FWIW, I met someone last week who said she got herself all wound up with worry about what would happen with Zometa and she didn't experience any side effects. (She did have a rough time during chemo.) So, as ever, there's a range of possibilities... ... View more

Hello, all! Rads are going well so far -- only day 5 of 20, and just a tad tender. 👍🏼 Got 2.5 miles of walking in this morning, and trying to plan a bit of exercise this afternoon to help move off my post-chemo, post-Christmas pounds. Though still planning on baking some @Feenix & @Kip-inspired pumpkin bread (forgot to buy eggs yesterday).   GP this Friday for my first Zoladex injection out of hospital and I've got a tidy little list for him -- including getting a lipoma on my thigh biopsied (something I'd asked for 3 years ago but which got lost in paperwork and other priorities). Just want to be sure it's benign.   @Kip: Hurrah for good bloods. Go, Add-Aspirin!   Hoping @cdc that you are able to overcome the captcha etc. demons to share an update -- and hoping, too, that you're doing well. ... View more

@cdc I find that I have to log in before typing -- even if it seems I am already logged in, since the time-out function inevitably boots me and the not-robot thing won't override that. Mostly, though, I have given up on posting via mobile and copy my post to Word before attempting to post via computer. Ridiculous given the vendor was supposed to deliver a mobile friendly site! ... View more

@Wahini The goody bag was amazing - eye shadow, eyeliner, mascara, blush, tinted moisturizer, cleanser, lipsticks, lip pencil, etc., from brands like No. 7, Clinique, Rimmel, Lancome, etc. (the exact brands depend on what they have for your skin colouring). The videos are good, too.   Also: When I went to Boots to buy eyebrow pencils before I knew about the LGFB workshop, I mentioned at the counter that I was in the market for pencils because I was about to start chemotherapy, and trying to figure out what to get (since I had thick eyebrows, so eyebrow pencils seemed like a weird purchase -- and I had no idea what to buy, so needed advice). And... I got a freebie tube of foot moisturizer along with my purchase. I can't say it'll happen at every Boots cosmetics counter, but you never know... ... View more