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

[LemonDrizzle10]

Old thread nearly full!

@lucysmam
Mine are pretty good mostly
Last week I had MRI at one hosp then bloods at another, but it was finding a slot for the MRI

But I had wig fitting at 10 one day and oncology at 3. They rang and said if I wanted to come over after the fitting, they'd slot me in to save me coming back
I was impressed!

@Tilllly I find MRIs very stressful, but I cope with them. I can usually force myself into some sort of robot mode where I don't feel anything for unpleasant procedures - although I have to admit I wasn't that good at it while in hospital because I was just too sick and too tired. What do you do for yours? Diazepam, or do they knock you out? It's so hard.

I’m also taking a leaf out of @lucysmam book. Got offered a scan next week half an hour away, meaning a rush hour drive, do probably even longer. Phoned them up and pointed out I could have one 5 minutes away and they changed it - for the same day! Previously I would have just accepted it - so glad I’m on this thread!

Glad you got to go sailing @TopOfTheCliff. it’s really important to do more of the things that bring us joy.

I had diazepam for one @KentishMama but try to manage without
A lot hinges on the staff, sometimes they're lovely and make it easier
Sometimes they're utter wankpuffins

Question.... can chemo make you smell things? I keep getting a whiff of curry. But I've got a snotty nose too so maybe it's a funny cold or one of the drugs

@Tilllly Yes. I used to smell very strange things. I thought it was related to the weird metallic taste I also had during chemo... ?

Thanks, that's reassuring

I don't get the metallic taste but I've been getting weird smells this time

Morning all. Feeling at a bit of a loss today for some reason. Oncologist still hasn’t had approval for my Immunotherapy (Scotland) have now developed a lump on top of my cancerous lymph node (groin). No results on my brain mri either. Anyhoo! Does anyone have any suggestions about an alternative to a picc line - last one was great but barely lasted 3 months?

Hey @Whatevershallidowithmylife I'm not surprised you are feeling at a loss. You must really want to get on with the immunotherapy and not even knowing if you'll get it approved must be so worrying.

An alternative to a PICC is a port. I wanted one but there was a long wait whereas they were able to fit the PICC within a week of me asking. I think the procedure for the port is a bit more complicated as it goes under your skin but I think they are a bit safer and can stay in longer.

@Whatevershallidowithmylife
I didn't realise you had to wait for authorisation for immunotherapy. Mine was just issued straight away with the chemo, the oncologist just said that's what I was having. I know it's only funded for two years though

That was an interesting morning. Took DS2 shopping for a few bits for uni. Those few bits amounted to £200.

Then I threw up in the street on our way back to the car. I'm not sure if that was from the chemo or the £200

DS2 was disappointed that nobody stopped and commented, because he's been really really keen to use the cancer card and have an argument with a stranger in the street😂

I had my long-awaited appointment with my oncologist today. Now feeling pretty overwhelmed. She just dived in with her list of recommended drugs, not a word of sympathy about finding myself back in her care. She's not a very warm person, and seems only interested in prescribing drugs than providing any kind of holistic review of my care or treatment plan. She hadn't fully read the notes, I had to correct her on several points around my operation and the radiotherapy. It didn't inspire confidence.

Long story short I'm going to be on Letrozol (because Tamoxifen didn't work) with a Zolidex injection every month. Ribociclib (daily tablet for 3 weeks out of every 4) plus Denosumab (injection once a month) to strengthen my bones. List of side effects for each as long as my arm.

Average prognosis generally for metastatic breast cancer is 2-3 years, but "much better" if it's only metastasised to the bones. Whatever that means 🙄

I'll have 3 monthly CT scans of my torso to see whether it's all working. I also pushed for a brain scan and a bone scan to check the cancer hasn't spread to my legs or brain. She agreed to this but I had to push for it. Stated vehemently that it's not usual to have regular CT scans following treatment for primary BC, that scans are only carried out in response to symptoms. My point that this is completely different to my mum's care and the symptoms of my bone metastases were explained away as Tamoxifen side effects and when they worsened were likely to be a slipped disk, seemed to fall on deaf ears. The cancer was only picked up when my spine completely collapsed and I ended up in A and E.

I can't say I'm feeling at all reassured and wondering whether I should request a change of oncologist. Has anyone ever done that?

Sorry that's so long. I needed to share!

@tam23 excellent result from calling them to point out there was an easier option 🥳

@SewingBees I haven't tried changing onc - both are lovely ladies - so can't comment on that. Did yours say why regular scans are not usual? Mine are quite the opposite & request them regularly.

@Tilllly yeah, I had the smell thing going on too. Sorry you were sick after shopping - I can well imagine it was the after effect of spending £200, "just like that" 🤣

I tried ringing CT to change tomorrow's appointment - the number on the letter is for MRI 🙄 Lovely lady puts me through...answering machine answers..."we are closed for audit" 🙄 Brilliant. I'll expect a vocal eye roll then tomorrow morning when I call to let them know I won't be there 🤷‍♀️

Interesting day at school. Broken fryers & ovens. Shouldn't be a problem, cold menu until fixed next week. Except the cook neglected to tell anyone until I went on my break & reception were walking up for dinner. Back to class they go, I go and join them after my break. Teacher removes small child who's screaming. Fab. 28 hungry kids plonked in front of randomness on smartboard for an extra half hour while another school's kitchen cooked what they could for us from their stock & then not quite cooked chips for the rest. It's not bloody hard. Tell someone higher up there's a problem in plenty of time for it to be sorted ffs! 🙄🙄.

People annoy me immensely most of the time, can you tell? 🙈

I've had a restorative 🍷 & am wishing dd2 to hurry up in the shower.

@lucysmam I think maybe something alcoholic is called for in my house tonight but I'll wait until the little one is in bed. My husband is out so a strong gin and tonic (or two, or three), chocolate and Traitors is in order.

I'll have regular scans now the BC has metastasised, but for some reason the protocol is not to scan after primary BC treatment unless/until symptoms arise. Except that symptoms are generally palmed off as something else for months. In my case this has resulted in a major surgical intervention which is having a huge impact on my quality of life and unless mobility improves I could be looking at retiring on I'll health grounds. At 51. And I love my job.

Sorry, bit of a pity party going on here.

@SewingBees gin, snacks & Traitors sounds perfect. I meant to comment on your list of meds too - I'm on Abemaciclib rather than Ribociclib, but otherwise the same combo, and haven't had any of the side effects listed other than a little bit of achey-ness when I first started taking them, so it might not be as bad as you're thinking.

I'd be quite gutted to have to look at retiring just yet - I love my job too most days. I did however, have a fleeting "fuck it all & become a lady of leisure" moment a while back.

@lucysmam Thanks for sharing your (lack of) experience of side effects - that gives me some hope!

The one they really mentioned a lot was diarrhea but I've not suffered that. Obviously, we're all different, but fingers crossed you don't have many/any of them!

@SewingBees I started the same treatment as you in November (except the Zoladex) and the first cycle I had some bowel issues, joint aches, extreme tiredness and my wbc was low when they tested my bloods after 3 weeks. They reduced my dosage for the next cycles and I am now at the end of the 3rd cycle and have no side effects at all now. Even the tiredness has subsided a lot.
Bowels have settled, aches are mostly gone - I'm 56 so minor aches and pains are a feature of life anyway. I am taking some supplements alongside the meds to help with the side effects and support my organs.
I have spinal mets, one in lung and one in breast. The breast tumor is a recurrence on the same site as my lumpectomy 6 years ago. I am pretty angry about this as I wanted a mastectomy and they wouldn't agree.

@Englishrosegarden Thanks for sharing your experience, it helps a lot. I'm thinking that I'm going to stay off work until at least one month into the treatment so I have time to get used to it. I may not be mobile enough anyway to return - will depend on how effective the radio is to reduce the pressure on my sciatic nerve. I have physio at the end of the month so that may help, and I want to get swimming now my would has healed.

@SewingBees I'm sorry you had to deal with such an unsympathetic oncologist - my breast one is similar, and I know I need to change. But she's private, so it's easier to do than on the NHS. I'm not sure on the process there... Anyway, more importantly, my non-Mumsnet friend is on the same drug combo that you're starting. She says the first month was rough, first diarrhea and then constipation when she overdid the anti diarrhea drugs, and her bloods went a bit haywire. Then it settled very quickly and she says her QoL is good now. I thought it might be helpful to hear that.

@lucysmam That lunch situation would have driven me nuts! A school full of kids is hard enough to manage, but hangry reception kids.... I can't even imagine!

@SewingBees
Can you ask for a second opinion, as a sort of midway point? And take it from there?

Me either

They even gave me some loperimide (?) in case but never had the runs (can't spell diarea 😁)

@SewingBees Sorry you’ve had such a poor experience with your oncologist. It really wouldn’t hurt for them to show a bit of empathy. I went for a private second opinion as mine didn’t really seem very interested. I also felt he hadn’t read my notes before breezing into the room! The second opinion doctor explained everything to me really clearly and I used her advice to deal with my NHS one. I did feel I got the right treatment in the end, but after waiting 3 weeks for an NHS response, I went to PALS and it was sorted within 24 hours. I’m not sure if any of that was helpful or made sense, my brain is all over the place tonight! I hope things get better for you.

@SewingBees take that 2-3 years with a giant pile of salt. You will likely get that much on this first line of treatment. And bone only IS good (technically, but lets not get started on the pain aspect) because it cant kill you outright like soft tissue mets can/will. Its all a bit of the same line of bs that 'we treat it like a chronic illness now!' is, but youll get with the flow soon enough.

I think its good to swap up oncologists from time to time, they have your life literally in their hands and you need someone you can work with long term. Ive been with my current one three years now but Ive noticed some things falling through the cracks in the last five or six months so not real sure what is going on. Might be time at the very least to get a second opinion lined up. @KentishMama I found my current onc by coming up with a list of potentials based on their research and practice interests, then called my insurance to see if they covered them, then booked an initial chat with my first choice who reviewed my case and agreed to take me on.

The lidocaine patches I was given as a pain management alternative to oral painkillers made me feel pretty sick/didnt work great, but I was reading a fibromyalgia forum today regarding lidocaine patches and someone on there suggested Tiger Balm. I dug out the tiny pot I got in Thailand a few years ago and lo and behold it actually worked! I smell like one of those clove cigarettes everyone smoked back in the day in high school, but other than a really really sore butt muscle, my usual 5pm pain is dialled way down/gone. I think I have a nasty case of hip bursitis along with strained hip flexors, but lets see what the PT and acupuncturist say Monday.

I'm glad the TB works for you @HerbalRefreshmentt
I tried it once, can't remember what for, came out in a massive rash, like I'd got smallpox!

Thanks everyone for your messages in response to my post on Friday. I think I'll see how subsequent meetings with my oncologist go before looking to change. She may just have been having a bad day.

I'm also massively reassured that side effects from the upcoming cocktail of drugs my be negligible or at least manageable. It does however feel as though I'm entering a new phase of my life which I need to adjust to. I knew it would come, but had hoped it wouldn't be quite so soon after treatment for primary BC. I am not going into this phase willingly and perhaps I need to be more accepting of the changes and work with it rather than against it.