Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

Ok, all active treatment done ( I’m not counting the bone infusions or Letrozole. )
is that it now? Is my cancer journey over?
I don’t know where to put myself or what to think…

Well done Podgedodge. Let's hope it is over! I've heard a lot of people say that it's when the active treatment ends that they feel at a loss. I think I'd have a renewed emphasis at that point of making myself as fit and healthy as I could and making sure I'm getting some joy out of life, though probably working with private practitioners to get support rather than in my own. For now, perhaps feel proud of yourself you've got through what you have, it's tough

Well done Podgedodge! Congratulations on reaching the end of active treatment. I imagine it feels very strange after everything being so cancer focussed for so many months.

My oncologist has called me today and said she is discussing me in the MDT tomorrow. Mainly to discuss my reactions to pax, she is suggesting Abraxane. She’s also going to mention the spike in CA125. I can’t tell if she’s concerned or not. She said a single jump isn’t a concern, it can happen with chemo, but she wants to discuss whether I need a different type of imaging to check there’s nothing being missed. Just in case. I’m so tired of this. So tired of always worrying and being scared.

Well done @Podgedodge dodge. I imagine it must feel very strange for you.
@AGreatUsername I hope the oncologist has some positive news for you, if that's the correct word to use. 💐💐

I had the MRI yesterday, and they called me today to say they discuss the results in the meeting tomorrow, the nurse will call me with the results and then I have an appointment with the consultant in the afternoon. I have a stupid question 🙈 last week they said I'd be having a line fitted. Will they do that tomorrow, or will I have another appointment before the chemo starts? I realise it'll vary from area to area, I was just wondering about it and thought I'd ask.

Well done @Podgedodge but don’t be surprised if you don’t feel anything after finishing treatment. It’s a weird time and you have been holding in emotion for so long it’s hard to experience joy or relief.
@Chocolateismyfavourite your team are very good communicators. In my experience the PICC line was done by a specialist vascular access team nurse while the port was fitted yesterday in main theatres by a consultant interventional radiologist with full bells and whistles. Likely it’s a separate appointment but who knows?
I had a busy day out. I went in at 7.30 am to surgical admissions and the port was done by 12. My lovely SIL smuggled in lovely coffee and cake to the day unit which amazed the nurses so I told them I am a First Class Passenger and a VIP which baffled them.Then I trundled off to the chemo unit for dose one of EC. The nurse was a friend of DD so I really was a VIP there and @Acinonyx2 you are right the port is fantastic if a bit freaky. I was home by 5 and slept well last night although DH thought chicken curry would be a bland supper so I am a bit windy.
I wish there was a fast forward button to get through all this, or I could be put in an induced coma. I’ve got an MRI on Friday and a tumour marker implantation next week. Luckily I now have my parking permit for the hospital.
I’m getting all the kind messages now the news is out and gritting my teeth at all the thoughts and prayers and “you are so strong you got this!” stuff. They mean well but it doesn’t really help.
Sending love and powers of endurance to all
Top xx

@TopOfTheCliff Glad that went smoothly - one down.... Even as a cancer patient myself I sometimes feel I don't know what to say to others - people seem to respond so differently and want different things. I don't always know what I want myself and sometimes everything just irritates me!

@Podgedodge It is a weird no-man's land we cross into after main treatment ends. I swing between obsessive googling of some minor ailment fearing the worst - to wanting absolutely nothing to do with cancer on any level. I hope you get some peace at least some of the time.

I'm realising that it isn't just neuropathy in my fingers but seems also to be creeping arthritis. Doesn't seem much point in going to the doctor about it but wondering what I can do - anyone else develop arthritis post-chemo??

I hate the "you're so strong" shit. It really triggers me coming from a family in which it meant "you just need to put up with all the crap we're dumping on you and get on with things". I actually feel it's a contributing factor to my cancer, carrying on beyond what my body could really cope with whilst everyone else falls apart and needs my help. I know people mean well, but what choice do you have really?

The only other thing that possibly triggers me more is "it will all turn out fine"!

@SierraSapphire It's a tough call but I think my pet hate is: you just have to be positive

Is there anything that people have said to you that has actually helped or at least not hindered? I've not told people yet so dreading the whole thing - had my pet scan results now and bone marrow results back in so appointment next week then I guess it's go go go. Been doing some cooking for the freezer and getting some bits together for a hospital bag.

Just back from a haemophilia appointment as I've had some bleeds as well but hoping that's something of nothing.

What are your top tips for the disgusting metallic taste you get in your mouth from high dose steroids?

@Acinonyx2 @SierraSapphire another vote here for ‘you just have to be positive!’ along with ‘you’re so strong/determined/brave’ etc. Fuck off to infinity and never ever come back & if you ever somehow do manage to come back then fuck off quite a bit more.

And another vote here @TopOfTheCliff to be put in an induced coma. I’m losing it today. DD starts school tomorrow. I’ve run out of diazepam. Cried all the way through pre-chemo. After almost leaving hospital because I was so agitated. Chemo number 15 on Friday. FIFTEEN. I’m at the end of my tether. But still have to decide whether to have 18 & then go on tablet treatment or 15. Impossible choice.

Good responses for me include a friend who'd had cancer who just said that's really shit, sorry you have to experience it (no being positive there!) Another said I'm here with you, we'll do this together.

@mowly77 are you getting a steer from your medical team about the decision? I might be in a similar situation with 4 or 6 (which seems nothing compared to yours!) and about radiation. But I do find they all massively seem to underplay the negative effects and shrug them off as nothing much and focus on zapping the cancer as much as possible as the only really important thing.

The first part of this made me laugh. I’ve been very lucky so far and everyone has been wonderful, so many people have sent me cards and flowers etc that I didn’t know really even liked me 😂 It’s been very touching.

The second part made me sad though. I’m sorry you’re having a rough few days. That choice really is impossible. I felt the same about chemo, dammed if you do damned if you don’t, and I was only being offered 6 sessions.

@SierraSapphire have they offered you the option of only 4? I’ve only been told 6, and I know it’s going to get harder as I’m only 2 in and hating it, especially the constipation and bowel issues for weeks after each session.

@AGreatUsername Yeah both my hospital and the Marsden said 4-6, though it's not really clear on what basis that is. There's not much research on early stage OC, studies tend to be done on stages 3 and 4, so my consultant just shrugs! I have seen research that indicates that the increased toxicity of 6 versus 3 is not worth it for early stage but I haven't been able to face looking at it in detail yet. For endometrial it's four. It's unsettling though not knowing when this is going to be over. Is the abraxane (?) likely to be any less harsh for you?

Im all about going aggressive when the choice presents. Radiate that spinal lesion? YES PLEASE. You may or may not need breast radiation but.. JUST NUKE THE THING. This drug is starting to fail so... GIVE ME THE ONE THAT WILL ACTUALLY KILL THIS CRAP.

@mowly77 which pill are they intending to put you on - palbo or ribociclib?

@SierraSapphire the Abraxane will supposedly carry the same side effects but possibly milder as it is packaged in a cleaner way. She did say it’s less likely to cause such severe neuropathy so that’s something. Then there was the hideous bone and muscle pain I had and the all over body rash, I’m hoping that won’t come back tbh.

Herbal I’m more towards giving it all I can while it is at its lowest too. I would like it gone or as gone as possible!

One of my (many!) issues is that I have a inherited cardiovascular condition which may very well never affect me, it didn't ever affect my dad, but chemo makes it more likely that it might kill me, although then again it might not, but the oncologist doesn't seem very worried about that!

@Acinonyx2 thank you for those kind words. I have had polyarthritis in hands and feet that was lurking when I was first diagnosed with some autoimmune antibodies. Chemotherapy shut it up for ages but when I started anastrozole it burst forth. Zolendronic acid made it really severe too. I’m on exemestane now which is slightly better. The silver lining to having chemo again is a break from the joint pains with the immune system switched off and all those steroids. It makes me feel so old when I am seized up and hobbling!

@SierraSapphire when I am doing scary sailing things our catchphrase has always been It Will All Be Fine and it generally has been. So my first mate did a lovely calligraphic poster for me and I framed it. It comforts me despite being meaningless and not necessarily true. I suppose it is just what works for each of us to get through. People think because I have a small tumour caught early the treatment must be easier but it’s exactly the same.

@mowly77 you have come such a long way despite how awful it has been. I admire you a lot as I have had an easy ride by comparison and that has been hard enough. All the best for tomorrow - it will be an emotional and precious day with DD.
Sending hugs and strength.

I know I am strong and will get through but that doesn’t mean it isn’t hideous.
love to all
Top x

Has anyone had something show up on a PET scan that didn’t show on a CT? The MDT have decided to give me a PET scan due to the rising level of CA125 (although still hoping that’s a blip) and now I’m terrified all over again.

My pet scan didn't show anything nasty that the ct and mris didn't show - other than arthritis etc.

Gosh I so hope that’s the same for me. I don’t know what they’re looking for as the CT was clear but I’m assuming more lymphatic spread that is too small for CT. I’m absolutely bricking it now, not helped by the fact I know nothing about it all. If the lymph nodes behind my tummy or in my chest show cancer does that mean I’ll be stage 4 then? Can it still be eradicated or just held off? I just don’t know.

Sorry @AGreatUsername I'm clueless - all they said to me was that the PET scan highlights the lymphoma cells as the nuclear dye makes them light up like a Xmas tree by attaching themselves to the glucose or something which is why you have to fast before the test? I had only ever had ultrasounds, MRIs and CTs before but it does seem to work in a totally different way.

Sounds like they want better imaging. While either is good on their own, the PET will catch things at an earlier instance but will complement the existing CT scan for a better view of what may be going on and where, if any, growth may be taking up tracer (i.e. where is the problem!).

palbo & letrazole @HerbalRefreshment . Starting on a nuclear dose of palbo & then taking it down if I can’t tolerate it. Sounds fun! No-one even knows if this combo will work for me! Love it!

scans at the end of September. Last one showed partial response to IV Pax so it’s a headfuck to come off one treatment that’s working back into the unknown.

I failed at the 125 level first month - tanked my numbers bad, but I hung on at 100 until the last month when I finally dropped to 75 before it stopped working. Some women get a lotta time on that combo like 7+ years and still counting. It just wasn't a slam dunk for me and frankly I was kinda glad to move on. Actually new research has come out in the last 6 months showing that ribociclib may be the better drug (even though they are the same mechanism).

Mowly Hope your little girls first day at school goes well. Its lovely to see them start school.

I thought I was finished with 2 surgeries, chemo, radio and just hormone tablets and reconstruction surgery and endocrinology tests to go but nope they phone yesterday with a you have been selected to go on a 2 year drug called Abemaciclib to add to everything else but it has loads of side effects and low benefits. I had this lucky prize winner cancer call whilst half my body has been numb for about 3 weeks, face is burning, feeling sick, aching all over, dizzy on standing and school are insisting they may need to call police each day DS gets scared and hides. They told me to look up side effects on Macmillan, first side effect seemed to say you will need to stay close to a toilet for the first month as your d&v will be so bad. I told them that death was looking an increasingly attractive option with the treatment and DSs school combined but that I would think about it. Though I was shocked how much the treatment costs, £38k a year for 2 years. DH reckons I should get it and sell it on. 😂I asked about changing from Tamoxifen and they said they were about 3 others I could try but may be the same and I would also get monthly injections as well but I could still have this extra drug on top. Its good to be offered but I can't say I feel any enthusiasm. And the data seems quite limited as its so new. Trying to redo the living room as well and DD has just finished GCSEs and onto A levels.

Welcome to all the newbies, sorry you have to be here.

Love to everyone.