Thread #7, living with incurable cancer. Taking ALL the drugs and remembering our lovely friends

[sellotapechicken]

The other thread was full! I am waiting for the oncology assessment unit to decide what to do with me tonight. I keep spiking temps but it goes after paracetamol so they can’t decide if it’s a reaction to immunotherapy or not..

Hoping this works!

I have weekly complimentary therapy
( reflexology) I also use “ alternative” stuff for pain relief ( oil and pastilles) I find both very beneficial and relaxing.
I strongly believe that we should be able to pick and choose what products and therapies help us holistically.

I have a bit of a TMI question for you all...

Has anyone become lactose intolerant from any particular treatment? I've switched to oat milk after having loose bowel movements for a while & that seems to have fixed the loose-ness/urgency issue. Just wondered if it was a thing before I discuss further with oncology (I'm not overly concerned since the milk switch seems to have sorted me out). Not sure how we'd work out which treatment it is either tbh 🤔

Not me, my problems tend to go more in the other (bunged up) direction.

What meds are you on?
I developed a gluten intolerance on one of my meds. The anti sickness and antacid lansoprozole meds made it happen.

as soon as I came off those (and steroids) I was back to being normal. Honestly, a gluten intolerance is not fun and the smell of my farts was something else!!

@BetweenAppointments Letrozole and Abemaciclib. But, have been for over 2 years now and not had this 🤔. Dd1's also switched after having issues for a while & finding oat milk easier which also makes me not overly concerned (maybe I should be?). Either way, I'll discuss at my next appointmenr.

@lucysmamah the Same as me!! Abema is well known for causing upset tummies, but if you’ve had 2 years of being ok it seems strange it would affect you now. Hopefully with a bit of tweeking you can get on top of it x

Yes, that's what I thought. & the oat milk does seem to have sorted it. Although, could also blame the cheap ass cheese in school lunches, if I was so inclined. It's always just after work. I only noticed because dd left some oat milk so I've used it up rather than waste it. Maybe it's the extra cheap dairy in our school lunches? Suppose, if I don't get an answer before, I'll find out when (very yummy!) school dinners resume 😋.

Should say, used hers up, then switched mine since it seems to have resolved my issue. I wasn't intentionally switching til it did me a "solid" as dd2 joked earlier 🙈 <chucks dd2 her coat>.

Hi, regular lurker here with a host of wide-ranging health issues.

Delurking only to ask, is GoldenDog1 okay, has anyone heard from, think last posted to say she had a DVT and was off chemo for three months.....in November '25?

@OneThingAfterTheOther I am sorry to say that GoldenDog died a few months ago.

Chemo stopped working and her cancer spread very rapidly, she died peacefully with family around her.

Thanks for letting me know, I really appreciate it. Her posts were caring and thoughtful, hope she is in a great place now.....

CT scan done, results on 6th May!! Bloody hell, 5-week wait, I mean, come on…

So far, paronychia (red inflamed skin around fingernails) has been the biggest side effect of this “gentler” weekly Epirubicin. I was told to soak affected fingers in warm, salty water for 10 minutes twice a day.

I know @balkanscotthose long waits.... my next one is due soon and I have a follow up appointment 2 weeks later but fear the results will not be in, which has happened before. I psyche myself up then nothing. Those side effects sound nasty.

I'm back in the oncology unit for more blood transfusions. They're a brilliant team at my local hospital, after a blood test yesterday to see what effect Saturday's transfusion had had they signed me up for 2 units today. They know I need to leave for school pick up so they got me in and started as quickly as they could.

No messing about "we're giving you 2 units, this has been going on too long now" (me feeling crap). Unlike Saturday's doctor at the big emergency hospital who was over precautionary.

Although I wish I didn't need to be here the staff are brilliant and make what could be an awful experience almost enjoyable.

@SewingBees do you feel any less crap as a result? Our unit's staff are fabulous - I usually end up chatting away for ages when I go in for my bloods/meds.

I’m moving off Abema and into Cape and Bevacizumab (Avastin). Has anyone had these drugs? Just wondered what to expect x

@balkanscot 5 weeks! Ooof that seems a long time. Is that usual timescale for you?
There was a segment in ITV this morning about wait time for scan results.

Pleased to report I can get up the stairs at home without feeling like my heart is going to hammer out of my chest and the blood pounding so hard in my ears I go temporarily deaf. So Easter holiday plans are back on, yay!

My last CT was 23 February, hadn't been written up when I saw my oncologist on 19 March. At one stage it was a 2 month plus wait time.

Oh! That's so good @SewingBees 😊. I had no idea a transfusion could make so much difference. What Easter plans do you have?

I still have 3 weeks until my next appointment but know my latest CT has been written up. Not knowing is vastly better imo - I presume I would know by now if something were amiss, however, perhaps not? Perhaps I'd just be waiting however many more weeks without a clue? & if there is something going on, and someone has chosen not to tell me, even though it was written up already - what's the point in telling them they're out of order making me wait when I knew it was written up. PALS are as useful here as a chocolate tea pot, and no-one actually gives a shit so long as their targets are met 🤷‍♀️.

@SewingBees Pleased to hear your second blood transfusion went well and that it did the job. The wait for the scan results is just excruciating.

@BetweenAppointments It used to be 2 weeks, then slowly crept up to 3. It seems now to be at the 4-week mark. Awful! For stage IV patients it should be expedited, for sure.

I have developed a red, itchy rash on my front trunk. It has freaked me out quite a bit because I had a very similar experience while in hospital, except the rash had started to spread to all parts of my body. Nobody seemed to have been too bothered about it, just “keep slathering Zerobase/Hydromol on”. Is it because of my liver -what if my oncologist was wrong? Because of Epirubicin? Because I have plucked up the courage to start using perfumed shower gel/body lotion? I feel normal otherwise and no sign of jaundice.

Christ, I hate it when I freak out at the slightest!

Just read about the rise in state pension age, then laughed as it is not applicable to me - I wish it was! 😢

@balkanscot Please don't ignore the rash. When I was an inpatient last year, one of the other ladies in the bay developed a rash, possibly a reaction to her chemo. It got worse and her skin started peeling. Changed from itchy to painful. She was eventually referred to the burns unit but they couldn't control it.

Hopefully yours is just something as simple as a reaction to shower gel but please get it checked out.

The thread has gone quiet again. How is everyone doing?

At risk of sounding like all I do is moan, I'm still in a crap place. Two blood transfusions (3 units) and I'm still exhausted. My hemoglobin and white cells bounced back, but platelets are still low. My oncologist is going to send me for a bone marrow biopsy if they haven't picked up next week.

In the meantime I have debilitating headaches every night which are massively affecting my sleep, and a few days ago I realised my tongue has lost some movement and strength and when I stick it out it veers off to one side. It's slightly affecting my speech and ability to eat. Oncologist is arranging a head CT or MRI to find out what's going on, but let's face it, it's not good is it?

I'm seeing my mum and sister on Sunday for mum's birthday. Hoping to keep all this quiet for now, don't want to ruin the birthday, or have all my symptoms minimised by mum.

I've had a nice week off work with my daughter, visiting friends and family, but the cancer shit show has cast a horrible shadow over everything. I've already decided to take next week off work and just look after myself. I'm not mentally up to returning until I know what is going on.

Thanks for checking in @SewingBees. I'm in a calm place currently which I'm grateful for. From my next appointment my immunotherapy is switching to being by injection instead of infusion which will mean a 2 hour ish treatment should only be about 20 mins. I've been trying ro be a bit more active, small amount of gardening, gentle exercise and craft work.

And sorry @SewingBees about the cancer shadow and your headaches and other symptoms. Hard going.

@Ohjoyohbliss I would have been in touch with the helpline had it started to get worse. In the end, the rash was confined to my trunk only and disappeared after 3 days of using Epaderm ointment and Zerobase and by using Dermol 500 in the shower. I know what you mean my burns, I felt my tongue was scorched from mucositis while I was in hospital. It probably was as it looked like it was covered by giant blisters/burns.

@SewingBees I am sorry to hear that even multiple blood transfusions failed to do the trick. I am keeping everything crossed for your scan. It is SO hard not to panic, though, I completely understand that. And people who say “Just enjoy yourself with your family”…. That cancer shadow is always there but especially so when your body is behaving in a way it shouldn’t really behave..

I finally seem to have put on a bit of weight. All that chocolate Easter gluttony must have helped, too.

I get completely 🤬 when I read articles about “older” famous people saying “How I look youthful at xxx age”. Fuck you all, I want all the wrinkles, saggy skin and everything else that comes with old age but I am not going to get it. People who are lucky enough to get older have NO idea how privileged they are yet they want to erase the fact they are getting older. It makes me really angry. Yet another cancer stage IV feeling that keeps on giving.