Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

Spuds we can rest a toe in this chat together, being on the lighter end of the cancer scale to what everyone else here is going through. I hope your scar is healing nicely. I'm going in this afternoon to get a potential BCC cut out (it maybe an irritated sebhorric keratosis so I'm not too stressed at this stage about it spreading) However, the actinic keratosis which is on my face, and which I've been putting Aldara cream on for 4 weeks, is no better and the cream has not worked. Actinic keratosis can morph into squamous cell carcinomas so it's not good to have one, and worse to have one that the simplest form of treatment can't resolve. So, after getting the one on my back cut out, I'm going to see what else I need to do for the AK on my face. I had a BCC there 7 years ago (about 1 inch away, clear margins), so I'm ever so slightly paranoid that this is related and that I'll need more surgery on my face.

But really, to say I'm awed by everyone on this thread going through major surgery, chemo, scans, etc is an understatement - you are all amazing and you have no idea how much courage you give me, by sharing your stories.

Wonderful news, @seizethecuttlefish! I hope you're recovery is swift and easy.

Chemo #2 yesterday and first port use was fine. Headache only started later in the evening and I managed a reasonable night (though the restless legs were bad at one point - had to roll out of bed, keeping my head on my elbows as it felt like lead, and do some ballet stretches for a bit. Must have been quite the sight!)

My tiny bit of good news is that oncologist felt the tumour and says it's shrunk down from 4cm to pea-sized after just the first treatment. So, I guess the meds are working! Wonder what can possibly be left after 6 treatments. Presumably I don't get to escape surgery even then..?

@Lubballoo out by the end of the week. Off morphine and oxygen but struggling to sit up for long.

Yay @seizethecuttlefish that's brilliant! Wishing you a swift and easy recovery x

@backformore good news from you too, excellent!

OK so I have ct tomorrow after finding out I have a large breadt ca. My question is. Is there any treatment if it has spread I feel its been there a long time

@backformore sounds good! My huge node went down after first treatment. After second, I saw the surgeon who said he could still feel something in the breast. When I told my onc that on the phone she said 'he's probably just showing off' But they want to catch every random cell out there and yes - still surgery even if it's all gone! Got to be sure.

@seizethecuttlefish it's been a long journey but here you are!

@HUGS65 waiting for you CT results to see if it's spread is a VERY anxious time - I know (walking down the stairs to go for the results I felt like I might pass out). I had good reason to think it had spread (even the dr thought so - I could see it in her face, hear it in her voice). But apparently it hasn't - or not so you can find anything. I guess I still don't quite believe it.

So wait for your results - they'll be quick about it (I was CT Fri - results Mon). Don't get ahead of yourself. If the do find something - there are treatments that will depend on what exactly they find.

Did I say thanks for the mast vs lump feedback? I guess I'm just scared terrified of the surgery and want to keep it minimal - but that may not be sensible.

@Acinonyx2 That's as I thought! Sigh. But you're right, we want it all gone... Have you decided re lump/masect? Did you have genetic testing? Presumably you still have a few rounds of chemo before you have to decide? Following with interest as I'd initially thought I'd go for a masect to be done with it, but apparently depending on the bc type, location, etc. it doesn't necessarily mean a lower recurrence risk than a simple lump. But absolutely depends on so many variables...

@HUGS65 I'd totally second what Aci said above. If it's not in your lymphs, chances are it won't have spread, and even if it IS in your lymphs there's still a good chance other places will be clear (I have two lymphs affected and my CT was all fine). So much depends on the type of b/c in terms of how they decide to treat. How long do you mean by a long time? A friend had no visible spread and no lymphs affected, but because she's triple negative the docs wanted to do chemo after surgery to be sure that any microscopic baddies floating around would be completely blasted. It's crummy, but it's also giving her peace of mind that little wannabe cancers won't stand a chance. On the other hand, it's perfectly possible to treat a different type with "just" surgery and local radiation. The worst is the waiting and trying to piece it all together, I know (my onc was an hour late for my appointment post CT and bone scans, and that was hellish!). Be kind to yourself and let us know how you're doing.

Just checking in, as I've not posted for a while. I had a big single blast of palliative radiotherapy to my lower back today. They didn't give me the usual anti-emetic beforehand, and I was horribly sick in my mum's car. Apart from that, all pretty fine- I just feel flat and unwell really.

@BitOfFun great to hear from you but so sorry about your nausea. Nausea is really horrible - be sure to check if they do this again. I've just got some super-duper antiemetics for this last chemo and I am really hoping no nausea this time - it's miserable. No wonder you feel flat and unwell. I'm finding you really have to stay on top of the drug situation - things get messed about all the time.

@Bloodybridget and others

Certain cancers and stages of treatment make you priority 4 and others priority 6

I’m priority 4, as are all those with haem malignancies as we have poorest outcomes of all those living with cancer who get covid. We are also amongst the most over-represented group in ICU (second highest group in there, by go-morbidity)

No idea when vaccine will teach priority 4. Most parts of the country are still doing 1 and 2, and the current instruction is to wait to be called

I have been told it’s safe to receive either type of vaccine, and although there’s no known reason why it shouldn’t work as it does in general population there is also no guarantee that it will. The intention is to have post-jab surveillance of key populations to try to learn more (including whether to re-vaccinate with other kind if shape differences, and maybe which types of vaccine to use against future coronavirus diseases?) But I don’t know how extensive that survey will be

Feeling rather flat this morning for no particular reason. Hope it’s OK for others

@backformore good news your lump is shrinking. I think you will get the CPR I had. The chemo really works on HER2 tumours.

I went for oncology review today and wow we are moving fast! On now to radiotherapy without much pause to recover. Also I got a dental review booked for tomorrow morning so I can start zolendronate infusions and I came home with a packet of hormone blockers.
I haven’t recovered from my operation yet but I think they’re don’t want to delay in case Covid gets worse.
The doctor didn’t have any prescriptive advice about exercise just said take it gently and don’t lift heavy weights.
I regaled him with all my annoying aftermath of surgery like swelling and numbness and nerve pain and he just shrugged and said it would probably get better. He did say I should accept if anybody offered me a Covid vaccine!
I came home very happy and went for a very short bike ride to celebrate.
I got a bit manic and gave some money to a small charity I support as well. This whole thing has been so grim and relentless I can’t quite believe I am coming to the last lap now. Keep plodding away folks every small step is one closer to the finishing line.
Regards to all having treatment and all waiting for appointments or results
Top

@TopOfTheCliff I was wondering when zolendronate infusions would start. Are they IV (wondering if they would use the port)?

In my mind treatment is a mountain with surgery at the top - then winding down.

@Acinonyx2 yes they are IV but only one every six months so maybe not worth keeping a port in just for that.
I see it as a grisly triathlon with extra hurdles thrown in!

Hello to everyone, and welcome to newcomers

I haven't posted for a while as one of my New Year's Resolutions (ish) was to stir myself from my 6 months of idleness, get off social media, lose my chemo weight, and generally transform my life. Homeschooling has rather put paid to doing anything much for myself (4 at home - aaargh!) but we're getting on with it, mostly enjoying ourselves, and it has certainly made me much busier.

I finished my chemo last Friday. Side effects still dragging on - mostly sore hands and feet - but at least these should start healing soon.

I hope others are getting on ok with theirs. How is capecitabine treating you @gillmoregirl? And wonderful news @TopOfTheCliff!

And I've actually had my first Covid jab (Pfizer). The oncologist said before Christmas that I was fine to have it when offered, and my GP (who seems incredibly keen to get me back to work- maybe she's just jealous of my new leisurely lifestyle!) rang me on New Year's Eve to say there were spaces for healthcare workers to have it done, if I didn't mind a 45 minute drive on New Year's Day. The rationale being that it'll be 12 weeks before the next jab, which will be roughly when I go back to work, all being well.

Anyway, love and hugs to all, Starmer

Hi everyone just to let you know I'm having my second operation at the end of January. Not too long to wait.
This time I'm going to a private hospital but still as an NHS patient as they are not doing cancer operations at my local hospital during this lockdown.
At least this time I'll know what to expect.

I'm so pleased that some of you are near or the end of your treatment. But sad that other are still struggling throughout their treatments.
Good luck to you all.

Hi all. Still in hospital, as I passed out this morning and understandably they didn't want to send me hone with plummeting blood pressure. To add to the sheer "it could only happen to me" -ness of this situation, the Clinical Director came to see me today to say that a member of my surgical team had tested positive for COVID. If you need me, I'll be in the corner banging my head against a wall!

@Starmer good to hear that you are finishing chemo. I'm also feeling a lot of time-wasting going on slumping about. Let's see if I can get some small achievements. Maybe small....

My fingers hurt and now my mouth is a bit numb - did you get that?

@Noidea2114 be good to get the op done and dusted.

@seizethecuttlefish

@Starmer Good to hear from you! I stopped half-way through the capecitabine, and only had the beginnings of neuropathy in my finger-tips. It's difficult to compare, given I must be old enough to be your mother and lacking the resilience of youth, to put it mildly. But I did find that there was an after-lag and I didn't immediately feel miles better in terms of energy. I no longer have asbestos fingers when it comes to cooking, even now. Still moisturising, which helps.

I'm still on the CEV list, 9? months' later, but that could be age, or they didn't revise the first one. I have no co-morbidities.

Thanks for kind words from @Bloodybridget and @LoveFall. You may come to regret them. It's a bit of a hobby-horse after my experience at my local hospital. @InOtterNews. It's just the gynae dept I have a problem with. Colo-rectal have been ace. Hope you are doing well. Lucky you had your transplant done when you did. I hear that King's are having to make room for PRUH covid patients when they are overloaded with their own. Using hotels in Croydon.

Greetings to all. Is everyone in the UK having horrible weather? London is drenched.
@BitOfFun sorry to hear you were so sick after the rads, are you over the nausea now? @Acinonyx2 I'd be interested to know what your very effective anti-emetic drugs are - although it's too late for me to request them this time.
@Starmer congrats on finishing chemo, and on getting your first vaccination!
@TopOfTheCliff do you feel OK about galloping on with treatment while you're still feeling rough after surgery etc?
@seizethecuttlefish that must have been a shock about the positive Covid test! Did they just say you should be extra careful for a while? Are you home yet, how's your BP?
@iVampire it's a bit worrying that info re cancer patients and vaccines is still unclear and confusing. I guess I'll just take whatever's offered, whenever . .
@Noidea2114 glad to hear you have a timeframe for the second surgery.
@HumphreysCorner hope chemo goes OK tomorrow, that's a lot of treatments - so the carbo/Taxol is weekly?
@Mythreeknights hope the BCC excision went OK and that they can find an effective treatment for the AK, whatever that may be - do you think surgery is the only option?
@HUGS65 hope you get CT results soon, as others have said it's horrible having to wait. Try not to imagine the worst.
@backformore hope you aren't feeling too bad after chemo.
I have a very sore mouth, had an oncology phone appointment yesterday and the doctor said the ulcers may indicate that my neutrophils are low again, in which case chemo due Monday might be delayed. Going for bloods on Saturday. I also asked her if there was any reason they would pause chemo, other than bloods; she said they were trying to keep everyone going and would only pause if it seemed OK . . I know infection rates must be rising at Barts as the very good CNS has been moved to an ICU ward.

@Bloodybridget, I'm only two rounds in, but I've been able to keep the nausea at bay with the pills I've been given here: apo-prochlorazine? Apologies if that's just the bog-standard stuff that everyone gets - I'm still getting used to all the chemically terminology...

@backformore I haven't had that prescribed, I get domperidone and steroids. I'll ask about it next time I speak to a doctor - thanks!

Penultimate chemo done today! And I have an appointment to see the breast surgeon tomorrow - the appointment was originally made months ago (when I was on track to have finished chemo by now) so I was expecting it to be rearranged until after my scans but I'm certainly not complaining, hoping to find out whether covid might cause a problem with timing. Please keep your fingers crossed for me! Finding the news increasingly scary, the situation at Kings in particular sounds dreadful. I wonder if those patients needing urgent cancer surgery are being referred to other London hospitals - just having to sit and wait for weeks and weeks would be appalling, so I really hope so!

@Lubballoo

Kings and St George’s have been using London Bridge hospital (which has an ICU) as a ‘clean’ hospital for cancer and other high risk operations, and have been doing since quite early on in the pandemic

Doctors come over from the NHS hospitals for their lists; I think the nursing staff belong to the hospital as do the doctors in residence who look after you post operative it (not 100% sure - I’m quoting someone I know who had two procedures done there last year and I might have misunderstood. He definitely appreciated the better food which comes as standard!)

Thanks @iVampire that sounds good and encouraging! I'm at Guy's and I think they are also using some private facilities (possibly including London Bridge as it's over the road!) . I think so far all urgent work has continued so I'm keeping everything crossed that stays the case. I'm very very glad alternatives are available for people from King's too. Thank god for the hard work and problem solving of our medics.