Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

@RawBloomers welcome to the thread nobody wants to join. It’s a friendly supportive place. I’ve been through the breast cancer triathlon twice in three years, for two different cancers, and am just coming out the far end apparently successfully. I’ve got a check mammogram next week. It’s tough but doable!
I think your DC will surprise you by taking things in their stride. Kids are very resilient. It will be harder for you trying to protect them. I guess you will have to make some contacts fast at the new school to get help with lifts which might be a good thing for the DC, if a bit uncomfortable for you. Good luck and let’s hope it goes smoothly for you.

Thanks for the welcome, TopOfTheCliff.

Twice in 3 years sounds particularly rough and unlucky. All the best for the check next week.

@RawBloomers Welcome to the thread nobody wants to be on - but it's the nicest, most supportive thread on Mumsnet!

I also had breast cancer - stage 3 - about three years ago. Now in treatment for another totally unrelated cancer. My cells are great at mutating.

What chemo are you going to be on? We might be able to help explain what side effects you might get, etc etc. I was on EC followed by Paclitaxel, in two-week cycles. And I cold capped to try to keep my hair (not very successfully). Happy to answer any questions.

@KentishMama My chemo counsellor said my course was known as ACT but not sure if that will be the same in the UK.
It’s 4 fortnightly sessions of Doxorubicin (Adriamycin) and Cyclophosphamide (Cytoxan). Followed by 12 weekly sessions of Paclitaxol (Taxol).

Numerous side effects listed but was told nausea and constipation were the ones most mentioned. Oncologist said nausea wasn’t too much of a problem because they deliver a bunch of anti-nausea meds with the chemo. But counsellor spent a lot of time on the additional anti-nausea pills they’ve prescribed. I guess it’s one of those things where it’s improved a lot over the years but it’s still nothing like “normal”?

Was also offered cold-cap for hair loss but it’s expensive and doesn’t seem to be that effective from what I’ve read, so I’ve bought a bunch of hats instead.

I’ve been reading over the thread a bit and see that my cancer drama, which seems the world to me right now, is on the milder end of things. Hope you’re continuing to recover from the bodged op., Kentish.

@RawBloomers I'm definitely feeling a lot better - just hit some bad luck during the op(s). I wouldn't even say it was a bodged op, but just a really complex operation with a lot of risks (my surgeon says that up until the early 2000s, they would have declared my tumour inoperable due to location). Anyway, I went out for lunch with my mum today, and I've booked an Easter holiday, so I'm starting to feel like myself again!

ACT is very similar to the ECT that I did. AC is typically the harder part of the chemo, especially if it's every two weeks. My advice: take all of the supportive medication (steroids, anti sickness, etc) like clockwork on the first couple of cycles, even if you think you don't need them. It's much easier to prevent sickness than to try to treat it once it's there! And use a little notebook to keep track of your side effects, that will help you communicate them to your team so you can fine tune your meds. For me, a typical EC cycle was: Day of chemo: very nauseous, hyper and sleepless from the steroids. Day 2: Hyper from steroids, milder nausea. Day 3: feeling surprisingly ok. Day 4&5: Total write-off - mostly spent sleeping (steroid crash), pain from the bone marrow stimulating injection. Day 6: almost ok. Day 7 - 14: feeling good, more normal every day. Then rinse and repeat. I was able to reduce the anti sickness a bit from cycle to cycle, but had to add indigestion meds because I really suffered from that. And I tapered the steroids more gradually after the first two cycles because I crashed so badly after day 3 in the first two cycles.

My Paclitaxel was ever two weeks rather than weekly. My main side effects were bone pain and extreme tiredness. I think maybe @TopOfTheCliff did weekly Paclitaxel and can share how that felt?

I did weekly Paclitaxel x18 weeks @RawBloomers @KentishMama & honestly had no side effects apart from the hair loss after wk5 (could have disguised it longer but the clumps were so horrible), and steroid induced wide-awakeness/5am munchies. That said, I did take an anti-sickness tablet every week as I left the chemo suite - just in case - and really enjoyed taking a nap when I felt like it even though I felt no more tired than usual.

@RawBloomers the original plan was to stop somewhere between 6-12 weeks but we kept going since I didn't have any particular side effects. The pharmacist I spoke to one week did mention that weekly paclitaxel is 'easier' than fortnightly/3 weekly, as they tend to see less side effects than if it's spread out.

Not much to report here - back to work/school tomorrow for me and the girls. I have more creations to deliver. Still waiting for a call back from cardio dept (not surprised tbh - they're possibly the rudest dept I've come across & the next member I see/speak to will be being told as much), and still waiting for a call back from dd2's MH referral since they had a totally random number for me.

Will be ringing both tomorrow - Cardio to point out that if no-one rings to explain why I've been offered a single date/time for the MRI, & they refused to look further, and why it cannot be at the more suitable/practical hospital for me, then I will cancel; and MH referral to find out what happens next since it's not my (or dd2's) mistake.

Oh, and, my hair is a bit erm...interesting 🤔 It sort of sticks out in all directions.. .brilliant 🙄

@lucysmam I’m a little bit scared by your assertive plan. Let them hear it! Good luck going back to school.

@RawBloomers I had three weekly FEC x 3 then three weekly docetaxel x 3 with Herceptin and pertuzamab for cancer no 1 ( triple positive BC) plus 15 more Herceptin then two years later dose dense two weekly EC x 4 and two weekly paclitaxel x 4 for cancer no 2 which was triple negative BC The paclitaxel gave me awful bone or nerve pain which responded to gabapentin eventually. I lost all my hair both times. To round it all off I had 8 three weekly cycles of Capecitabine which made me very tired and my feet blistered. Surprisingly I am quite well now, if a bit fat still from the steroids. My hair is growing well but sticking out like @lucysmam . I’m having some highlights put in this week. I am a cheery optimist and it seems I am indestructible too. You just have to stay in the present and get through one day at a time without looking too far ahead. It will all be fine!

@TopOfTheCliff I figure, if they don't call (I suspect it is at least sort of deliberate as the reg looked awkward when he first said this hospital & I pointed out they have the machines here too but he pushed for there), then word will get back that I cancelled, and someone should ring to discuss...opening up the door to "your dept is bloody rude" and "I'm the patient - your plans need to include and suit me, since they're for me. Don't assume I'll dance to the tune I'm told to...". That's how it goes in my head anyway, we'll see how it plays out in RL.

Highlights might be something to consider - I've just seen some photos (on fb) of a secondary school classmate's DW. She has lovely cropped, silvery, hair. I think mine might behave similarly with a bit of some sort of product. Maybe wax rather than gel 🤔

@RawBloomers get something in advance for the constipation
I had it from the pain meds a week or two back, couldn't believe how uncomfortable I was or how nothing made a difference. I even drank prune juice 🤮
It's all I could post about! 💩

I've got my repeat MRI scan in the morning, as the last one had a little dot on it, that they didn't know what it was

The oncologist thought it an artefact of the scan, but given the lung cancer is stage 3C, and they were surprised they hadn't spread to my liver or bones, I'm now paranoid it's actually spread to my brain.

Not helped that I keep smelling something funny this afternoon/ evening, that no one else can smell

Hi all, I have been off the threads for a few weeks and have not caught up yet, so apologies. I tried to give myself a break from thinking about cancer and spent time away with family and friends. It was lovely. I felt like my old self for a while

Back home now, back at work and back to reality. Immediately upon getting home yesterday, I was sent straight into an anxiety attack upon finding a swollen occipital node. I am pretty sure that is what it is due to location. Feels hard fixed...oh dear. I just thought I might be heading in a better direction, and now this. I can't take any more. I can't make my family take any more. Lulled them into what now seems like a false sense of security. Have only told my partner about the new lump. And you lovely people now.

I hope you all had a good X-mas and are hanging in there.

👋🏻 @isaxx

Hang in there... the node could be swollen for lots of reasons

How soon can you get it checked?

Hi @Tilllly I have a 4 month post chemo appointment with my oncologist on the 22nd this month, so at the latest, I could get it checked then.

Of course that is never the end of it with these things. She would then need to send me for an ultrasound, biopsy, etc. etc. So, I expect the uncertainty to continue for some time. Have to try to go back to taking one day at a time so as to avoid the fear getting out of hand.

I was so enjoying being able to think a bit further ahead over the past few weeks - at least as far ahead as planning something nice for a few months into the future. Now I am back to not being able to plan anything beyond the next medical appointment..at the mercy of what is done to us in this shit show.

@RawBloomers sorry you find yourself here. I hope you do not end up having to stay here for too long,but, in the meantime, this thread is a lifesaver. It sounds like you will be having quite intensive treatment for a stage 1 breast cancer. But, everyone's situation is different and it sounds like they are planning to do everything possible to ensure they get rid of it.

I got a letter telling me the unexpected brain mri was also likely to be an artefact but given my history (4th lot of cancer) I'm not convinced.........

@Whatevershallidowithmylife
I'm trying to be positive

Not been on here for a while, I've just been trying to get on and not think about it too much!

Had my CT and simulation appointment planning for my radiotherapy this morning. It's not a very dignified process is it? Got my tiny tattoos and that was fine, but they then said that because of my scan they want to increase my radiotherapy to 10 days rather than 5. Something to do with the "Tumour bed" . I thought I understood at the time but now I'm not so sure. Might give the breast nurse a wee phone as it's left me a bit unsettled.

Anyway, starts on 24th January for 10 days. Could get some bad skin reaction apparently, and it could wash me out a bit for a couple of weeks, is that right?

@isaxx One day at a time is the common advice, but the waiting is painful. Do you have a route to getting checked sooner? I haven't used the NHS in nearly a decade when it was frustrating but seemed to manage to step up when it counted, but I only have MN horror stories to guide me on what it's become since.

From what I understand my treatment is aggressive, but my largest tumor is 1.9 mm and cancer was found in one axillary lymph node (I'm unclear why that doesn't make me stage II from what I've read about staging since my appointment) but scans show nothing further. So they're trying to hit it hard so that they don't have to take out too many lymph nodes in surgery. Which sounds good to me.

@Tilllly Thank you for the advice, I'll make sure to get stuff in. I was constipated when pregnant and I recall it made me miserable! Much more so than the exhaustion, difficulty moving about or occasional pain!

I have also been smelling things nobody else can. (And noticing swollen lymph glands everywhere, pressure in my breasts from nonexistent lumps, etc.) I hope your symptoms are as psychosomatic as mine.

@weegiemum I had 5 radiotherapy sessions with my initial breast cancer, post lumpectomy and chemo. I had a mild skin reaction and I felt a bit tired, but given it was after 4 months of brutal chemo and the journey to hospital was an hour's drive each way I didn't feel the tiredness was extreme at all.

I start radiotherapy on Wednesday for the metastatic tumours in my spine - ten or fifteen sessions. I'll find out how many on Wednesday. I've been warned to expect tiredness but I'm hoping I cope as well as last time as it's massively easier on the family unit if I can drive myself. I've also been warned I may initially get a pain flare up on my sciatic nerve which is being impinged by a tumour, also hoping that doesn't happen. I have pain meds ready if it does, but they affect my ability to drive and make me feel very spaced out and I just don't like taking them.

Have an appointment with my oncologist on Friday to discuss chemo, not really sure what to expect at all. I need to start preparing my questions.

Does anyone have a strategy for managing AI induced stiffness overnight? I woke up two hours ago stiff as a board and had to take some painkillers, and now can't get back to sleep. Just wondering if there is a better approach to this that doesn't involve more drugs than what I am already taking.

Swapping AIs won't be possible and I'm back on them after 7 months off, so not sure what the problem is this timr as I did 3.5 years on letrozole no issue and yet exemestane is just beyond a problem.

@weegiemum I had 15 radiotherapy sessions. My skin felt a bit hot and tingly at times, but no real visible reactions beyond some redness. I had to wear very soft fabric though. A silk scarf put into a soft, non-wired bra felt quite nice. I also felt tired, but my rads started within a week of finishing 4 months of dose dense chemo, so I had nothing left. Rads were a walk in the park compared to chemo. (The radiotherapy team said nearly every chemo patient says this, but it can feel a lot harder if you haven't had chemo first.)

@HerbalRefreshmentt Heat helped me with this. I now own wheat bags in all sizes as they are more pliable than hot water bottles. A friend also got one of those heated blankets - that might be an easier idea?
With the Exemestane take a note of the brand you're taking, and change to a different one if your bone/ joint pain is too bad. For me, both Accord and Myland are utterly horrid. Pfizer is okay. Zentiva is amazing, no bone pain at all. You can ask your GP to specify the brand on the prescription once you've found one that works, then the pharmacy has to supply that brand.

Today's complaint: I'm really struggling with sinus pain. Maybe normal after 3x surgery through the nose. But maybe not, it feels like it's getting worse. So I emailed the Clinical Nurse Specialist and asked at what point the pain is considered serious enough to need treatment. Her answer? "Everyone heals at different speeds, just be patient." That did not answer my question AT ALL! This woman just specialises in hand-wavy non-answers, and I'm not coping with it at all. Another example: "Can you confirm that you'll test the tumour tissue for TP53 mutations?" - her answer: "We test for a wide range of gene mutations, please don't worry." And guess what, they didn't test for TP53, so now I'll have to do that separately and privately (it would be a possible explanation for the double whammy of breast and bone cancer.)

I'm just so annoyed, and I feel utterly unsupported.

@weegiemum My main issue after radiotherapy was tiredness. I moisturised a lot and no skin issues apart from a change in colour.

@HerbalRefreshmentt Sorry you’re suffering with stiffness. I asked my oncologist if I could take omega 3 and collagen and she said that was fine. I also read a study about reducing AI induced stiffness using glucosamine and chondroitin so I’m taking that too. Had a few aches and weakness but not too bad. Do check with your team though, as I’m not any kind of expert!

@KentishMama I’m sorry you feel so unsupported. It ‘s so frustrating when you just want answers/ things done properly and you don’t feel listened to. I hope you feel better soon. I’m also doing private genetic testing - apparently my family history would qualify in the USA but not here. Sending strength and healing.

@tam23 That's really interesting, how are you doing the testing privately? Can you share details of the test, or the clinic you're using, or similar?

My oncologist was not in favour of collagen supplements and quoted a study that showed that it could trigger breast cancer cell growth. She did, however, recommend glucosamine and chondroitin as well. It's strange that different oncologists make different recommendations, isn't it?

@KentishMama Yes, I had heard that about collagen so was surprised when she said it was OK. It may be that as we are all so different, even with the same cancer, risk levels are different for each of us?

I’ll PM you about the testing.

@HerbalRefreshmentt Forgot to add, I’ve also been prescribed high strength calcium and vitamin d twice a day.