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.

Oh god I’m sorry your call went like that @SierraSapphire how rubbish. I hate the way they worm out of answering questions. It’s not fair.

Top, sorry you’re having a medical panic, your symptoms sound scary but I am hoping they are not what you fear. Congratulations on your daughters wedding though, how lovely.

@mowly77 sorry you have to continue chemo, what a horrible choice to make. I’d probably continue if it was working, but that must really interfere with your quality of life the rest of the time.

Would have been tempting Nana but it was a phone appointment! He's going to dislike me even more when he gets a copy of a letter from the Royal Marsden that agrees with my interpretation of the latest professional guidelines and not my hospital's. Though he did say at one point "you know as much as me" which isn't really what you want from a consultant.

It’s an impossible decision to make @Silkierabbit . My oncologist plans it “indefinitely” basically until I get neuropathy. But the other side effects are unrelenting. And I will have to be on some form of treatment forever as I have MBC.

But after three months at a reduced dose of 75% I had what they call a ‘partial response’ which means tumours shrunk by 20-30%. If I can make it until the end of September that’s another three months. They’ll scan at end of September - every three months basically. If I demur further IV chemo I’ll be put on tablet chemo and estrogen blockers I think. No one will be able to tell me if those will work for me until I try them.

I am so fucking fed up I can’t tell ya.

But no more or no less than anyone on here. Love to all.

They never answer any questions do they @SierraSapphire @AGreatUsername !!! That back and forth sounded very familiar Sierra …

and the Marsden definitely disagreed with my oncologist and she clearly didn’t like it. When I decide to get off the weekly IV chemo I’m switching to the Marsden.

I’ve got an appointment with my oncologist next week and I am already steeling myself!

That all sounds tough @mowly77 - though good there's been some shrinkage.

I'm too far away from the Marsden to make it my regular hospital, but I'll run appointments alongside for advice whilst I can afford to do so. I'd love to change hospitals, but would have to go further away and then couldn't count on friends for things in the same way so I feel a bit trapped.

I'm so sorry Mowly that does sound like really awful choices. I'm not sure what I would do then. In my head I if I get to stage 4 I refuse all chemotherapy/treatment and go no contact with anyone medical, go and live on an island (maybe Bryher), canoe all day and come home to Maine Coon cats. I die then go to live with my great aunt in heaven who makes lemon cake and we sit and eat in all day, drinking tea on recliners in her beautiful garden and cottage. But its fantasy land. My great aunt did do something like this though, she died in her thatched cottage / beautiful garden from breast cancer when I was a child and she refused all treatment. But she was late 60s and no kids.

Its so difficult, I think for me it would depend on side effects of the different treatments and life expectancy with each one vs no treatment / minimal treatment. I guess you know what the Pax is like, I don't know if they could let you have breaks like weeks off sometimes where you could do more. I don't know with the tablet option, could try asking on a bigger forum but find these things vary person to person or I guess you could try it and go back if doesn't work. Its so hard with children though, you kind of feel you have to go with the longest life one but if there's no quality of life is it worth it. Sorry does not help much, the closest I had was when I was given choice of 3 chemos and its like do you want poison 1, poison 2 or poison 3 and its hard to feel any enthusiasm for any option.

Sorry you had issues Sierra Yes also had the super unhelpful consultant as well at the start, said to me we found these 8 things wrong with you on the CT scan, so you are probably at stage 4, we need to do further tests, if stage 4 is confirmed this will mean we cancel all your current treatment plan. I asked what will it be instead. He said pointless answering that now but tablets and walked off. All alone as well due to covid rules. They then started having big delays and I did a complaint and was moved to another surgeon who was lovely. Oncologist was lovely though 5 mins every month with her.

4th radio done, last one tomorrow morning. No sign of the hormone tablets but not in a rush to get those.

Ahh @Silkierabbit no contact with the medical establishment; an island; many, many Maine Coons (and I’m going to add a shit tonne of very strong painkillers, probably some wine, a few thousand edibles, you know, just in case, to my fantasy too) sounds like bliss.

I would be making very different choices if my daughter wasn’t just about to turn 4, yes.

Sadly as a parent of a very young child it’s about the longest amount of life I can get & I feel like I’ve got to suck up the consequences and side effects. I haven’t asked about my life expectancy and I won’t. I can’t deal with that information now. Plus I honestly don’t think they ever really know unless it is very advanced and very obvious.

It’s rather a case of try each treatment and stay on it for as long as it works/or side effects make it untenable. And after tablet chemo & hormone blockers there is another treatment the Marsden told me about specifically for BRCA carriers like me that has tested better than chemo in clinical trials.

There’s a FB forum specifically for MBC and there are women on there on all sorts of treatments I’ve never even heard of. Many for many years.

But nevertheless in non-fantasy land if I was single and childless I’d probably take the tablet treatment (no hair loss, not as harsh), sort my affairs out, write letters to all my loved ones, and travel the world until the treatment stopped working. Then take myself off to Dignitas.

Speaking of which there is a brilliant Australian programme about assisted dying and some other stuff on Now TV called The End. Drama but also slightly comedic. Really great & thought provoking. (Although I’m not sure it did wonders for my mental state really).

And yes the Pax is the devil I know. I think I’m going to try and tough it out until the next scan and see if it’s still working. I could ask to have it every two weeks instead of every week if I get desperate — that’s definitely an option others have been given.

You’re right about the tablets, it just depends on the individual. Some women do really well on them, minimal side effects, others don’t. It’s just all a massive stupid unfair lottery.

Yes staying on Pax until next scan if you can tolerate that sounds like a sensible plan Mowly though do whatever feels the least worst option.

I did my blood test for endocrinology and last radiotherapy today then had drive through McDonalds. Does not really feel like I have finished though as I had 10 years hormone treatment to start, another operation for reconstruction, and now endocrinology are running tests for the adrenal mass which is about 3.5cm cubed I think. That one they think is not cancerous but not sure if I pass the bloods what they do whether they just sign off or they operate. Start hormone tablets in a week or so then 30th have phone appointment with radio for review then 8th have oncology appointment and endo appointment for tests / reviews so it is reducing and chemo and radio are over.

Yes I watched this programme on Netflix about end of life thought it might help but nope it made it worse, everyone dies quickly in it and it was just do you want to die in a hospital, a hospice or at home and was set in US so not sure how similar it is to here, they were all in own rooms.

Last radiotherapy and drive through McDonald’s - woo hoo. Congratulations @silkie it really does sound like you’ve been through the worst of it and fingers crossed about the adrenal mass. I was on the hormone tablets for a while before they switched to chemo? Are they estrogen blockers ? I found them tolerable only side effects was had night sweats woke up in a puddle … but then again I’m already menopausal as no ovaries. When I had tamoxifen after first cancer it basically puts you in menopause and I was 36 and couldn’t tolerate them and didn’t really take them properly. Christ. Thinking about it I do wonder if it would have made any difference to the cancer coming back if I had taken them. But that’s such a zero sum game. I was signed off by an oncologist for IVF and pregnancy anyway and was awash with hormones throughout that and pregnancy so anything could have triggered it. Lovely disease, cancer

Anyway! The End isn’t like the Netflix show you watched, it was more fun, it’s about a doctor who works in palliative care & one of her patients has got hold of some Nembutal (which is I believe what they use at dignitas, very gentle, like falling asleep) and asks her to test it to check it’s ok, but she’s anti the right to die so confiscates it as per her doctors oath & tries to persuade the patient that it’s not the right thing to do. But then the patient kills herself anyway - she has motor neurone disease. Her mother played by the brilliant Harriet Walter lives in a retirement village and gradually the daughter changes her mind about the right to die. And her and Harriet Walter go round helping people, some with end stage cancer, die peaceful deaths of their own choosing. There’s some family and teenage stuff thrown in there and it’s really good. Although it definitely got me thinking.

Im in a bit of a panic. Oncologist has stopped my PARP because I stupidly mentioned Id had a slight shortness of breath a couple of times. I* do have a reduced heart function, irregular heartbeat etc,. which Ihave had for years and doesnt cause me any problems. Im convinced the breathing thing is being out in the over 30 degree heat Wants me to have an echocardiogram done.
Im o scared I wont be able to carry on with this drug, it seems to be keeping me in remission. Theres nothing else I can have. Worried scan will show deterioration. Also long wait with NHS so I have been forced to book a private scan. With Grade 3 OC I have no fear of perhaps going with a heart attack, its probably an easier option ! Had been quite pleased with the fact my CA125 was steady

@thereisonlyoneofme oh no, I hope they don’t stop your meds for long!

Can I ask a question for ladies who’ve had raised CA125? How long post op did they go down? Mine were 478 pre op and are now at 311 8 weeks after surgery. The oncologist seems happy with it and said it takes a long time to come down, but all the stuff I’ve read on line indicates a huge drop happens much faster. I’m even more panicky now about my CT next week thinking maybe it should be lower and the fact it’s still that high is bad.

Thanks Mowly Yes its Tamoxifen I think. They are supposed to have posted them here though need to track them down. I also wonder what caused the cancer esp as I have none of the risk categories and no family history (though several men dying very early in both families but never worried about being female) but as I don't even know when it started hard to tell and what can you do anyway. I also did IVF (male factor due to his Mum taking DES which is linked to cancer) but was 14 years before cancer detected so doubtful, heard stress can cause, hope not as not hopeful for future if that, maybe chemicals as I clean a lot but doubt and says not. Very tired now but glad to have finished chemo and radio.

*@AGreatUsername
I think 8 weeks after op there will still be some inflammation. If you are having more chemo that will take the number down.

Hi, from what I’ve understood it can be 3 months post surgery before CA125 levels drop but they can also in fact increase after the surgery due to the effect the surgery can have on the body.

I can also recall that not even half of women have the drastic reduction in their Ca125 level in the first few weeks following surgery that they expected to have.

And one other thing, it’s really only after 3 months that the Ca125 level would be used as a surveillance marker.

Im sorry if that all seems in no particular order but things just came into my head as I went along. And personally I can’t really try to reassure you with my numbers as mine was only ever 53 at its highest and test wasn’t done again till my first 6 month check up when it was at 5.

Wombling in, may I ask about periods?

Have any of you ladies had your periods return after chemo?

My chemo finished in March, however I'm still on 8 week intervals of immunotherapy but I can't find much material regarding periods and immunotherapy. I'm 42 but wondering if perhaps the chemo has put me in an early menopause.

It doesn't answer your question MayMoveMayNot but it just reminded me that the leaflet I was given after my hysterectomy said that periods should return within six weeks 😂. It was dated 2016 so I wonder whether they have been giving that advice since then.

I had my first chemo today. I feel a bit sick now. It's crap waiting to see what else I'm going to get.

@SierraSapphire How did you manage with the chemo session? I hope you're not suffering but if you are, it will pass! @AGreatUsername Thinking of you too with your session tomorrow.

@TopOfTheCliff A very worrisome time for you but I hope you will enjoy the wedding despite everything. Let us know how the tests turn out. Surely anything nasty wouldn't dare trouble you again after your tour-de-force around the country !

@Silkierabbit I recall you having neuropathy issues - do you take anything for it? I think I might have it in my arms & am just about to try amitriptyline as it's recently been making me very miserable with the horrendous burning pain 😟

@HauntedDishcloth I was recommended alpha lipoic acid for neuropathy.

The chemo was okay, I was sick once last night but I think I'd just drank too much, I seemed to be up peeing all night! I'm okay again this morning so far. It's just strange the first time not knowing what to expect with side effects and timing.

Thanks @HauntedDishcloth on reading around it seems chemotherapy can damage your hearing, particularly taxols and platinum drugs. I’m hoping it’s just a late gift from cancer not a new problem. I’ve got a hilarious out of tune wailing drunk singing in my left ear. It’s called diacusis dysharmonica which is enchanting.
Today I’m off to see the lymphoedema nurse for the first time so of course my arm looks really normal. Then it’s all systems go for DDs wedding on Saturday.
I’ve been following the discussion above about OC. My BC nurses keep checking my Ca153 but tell me it’s not monitoring. Why do it then? Sending love to you all.
My hospital is on its knees but somehow I glide through the system. I worry for the poor staff who are so exhausted. With Covid and energy prices and now the heat everybody is having a tough time currently. Perhaps I will take some cold drinks in with me for the staff!
Stay cool people, maybe it’s a good time to have no hair.
Top xx

Haunted I don't take anything for neuropathy but no pain with it. Mine is getting worse and down both arms and both legs now as well as hands and feet and like a half numb, half pins and needles feeling. I was hoping it would just go after chemo had finished but seems to be getting worse. I am off chemo now and don't think its radio causing it as started before, not hormone tablets as not started them. I am so like a zombie today as well. Yes may be worth trying tablets for pain and if on any meds check if its a side effect of them.

Well instead of a long wait on the NHs for an echo Ive gone private. Booked in for Tuesday Ive never had any private treatment before, and actually feel a bit guilty for sort of queue jumping, then of course I need to put my health first. Stress levels down considerably now, until I get the results !

Re hospital waiting times and random black holes in admin, my ds works at Guy's and St Thomas'. They still haven't managed to get their I.T. totally back on track - 3 weeks now since it got fried in the last heat-wave. Farcical situation with porters clutching bits of paper scouring the hospital looking for in-patients let alone the chaos in out-patients trying to synchronise blood tests and time-sensitive chemo-combo's for infusions. Younger HCP's seem to have forgotten how to write.

@TopOfTheCliff Sorry to hear about new worries. I only had oral capecitabine, but I had an ear problem, too. Mine was acute vertigo. I woke up with it about 4 weeks post-chemo. Dreadful. Had to crawl to bathroom on hands and knees. Doc put it down to re-growth of teeny-tiny hairs in ears which apparently get knocked out first by chemo. How were your land-legs during your voyage?

Also have one blocked ear. Feels like a build-up of wax from little hairs not being able to do their job. Going to investigate Boot's free ear-syringing if you give them the chance to sell v expensive blue-tooth hearing aid.

Best wishes for dd's wedding. I'm not good at weddings. Married in Caxton Hall by same guy who did Ringo Starr and v grateful to my dd who eloped to Vegas, but good to see family.

Chemo No1 done.

I had a reaction to the Taxol in seconds. Only 14ml had gone in before I felt light headed and couldn’t breathe (which was weird because I WAS breathing, but felt like I couldn’t). The nurses ran over and turned the infusion off and it eased within minutes. Extra dose of steroids and piriton and we went again and all was okay.

Cold cap was fine, I wouldn’t even go so far as to say uncomfortable. Snug and chilly but very easily coped with. I did have 2 blankets on as well and was still cold all day because this unit had some super efficient air con. Next time I’m on the ward without it so should be better.

@AGreatUsername - sorry to hear of your reaction but good it was resolved and you could continue.

For those asking about carbo/paclitaxel, I had them each week for 18 weeks alongside Phesgo (every 3 weeks) and only 2 were delayed because of bloods/ side effects. I had digestive issues - either constipation or diarrhoea and a gurgling tummy but took omeprazole which helped. Still not back to normal but very mild now. I did cold feet and hands and my hands have been fine but neuropathy in my feet peaked about 4 months post chemo but is much better now I'm 12 months on. Just feel slightly numb now. Think my very high heel days are over though. I did get some water retention but lost weight quite quickly once I was finished. Looking back (covid aside) I did a lot and walked every day etc.

@TopOfTheCliff - sorry to hear your latest update. I have been for more tests recently which completely sideswiped me but the symptoms were actually another side effect I hadn't accounted for. I hope the wedding is fabulous and a good distraction.

@Acinonyx2 - good to hear you are well and congrats on the new job.

Love to all and hope you are all coping in the heat. I'm on holiday in the uk and this summer feels very different to last when I was in the midst of treatment.